Heartbroken

Pain is a powerful thing. It roars and gnaws at you. As it increases, it overpowers you, and as you lay in the depths of despair, you are at crossroads. One side of you wants to fight, and another wants to give up and drift off to a happy place. A place void of suffering, discomfort and anguish.

Warrior is a term used to describe a brave or experienced fighter. Women living with Endometriosis are warriors. They fight invisible battles every day. They paddle like ducks, trying to stay afloat in a sea of despair. They dabble between wanting to stay in bed, all day, every day, and trying to live in purpose. They give themselves endless pep talks and flood their pillows with tears when they get overwhelmed. They pop pills like popcorn, and struggle with pain and symptoms unspoken.

They fight. Most times they win. But, sometimes they lose.

When you are living with chronic pain feeling alone is the order of the day. It is difficult to find someone who gets you. When you do, you cling to them like an infant monkey hangs on her mama. Thanks to the internet, there is a strong and growing endo community out there. The pain of Endometriosis has brought women from different backgrounds together. As you interact with other warriors you realize that you are not alone. Sometimes you wail like a baby when you read their stories. Overall, you connect with women you’d otherwise never have met, and you love. Oh, you love them.

The Endo community is heartbroken. This week we lost an endo-warrior, Allison Kimberly. A beautiful endo warrior who didn’t get the treatment she needed when she went to the hospital.

We Are Heartbroken

Our hearts are broken. We’ve lost one of our own. We are hurting. We are vulnerable and we need many things. We need our loved ones to believe us. We need our medical care service providers to help us when we say that we are in pain. We need to hear that we matter. We need a cure.

Even a warrior gets exhausted. Some days it’s harder to paddle. Some days it’s harder to smile. Some days we just need a break.

Today, I am saying a prayer for all Endo-warriors who are in pain- physical and emotional pain – that you may experience God’s peace, and healing. If you need someone to talk to, please send me an email via yellowendoflower@gmail.com.

May Allison’s soul rest in eternal peace.

Again we ask: please believe us and please help us.

Fight and Shine

There is no shortcut to treating Endometriosis. Nope, non at all. You have to put in work, and try different pain management strategies. The truth is some may work and others may not work as well. Endometriosis affects different women differently. In the same way, one treatment method may work for one woman and give another woman -a hell on earth- experience.

The first time I looked at the Endometriosis diet I concluded that all I could eat was air. My diet at the time was predominantly made up of everything that I ‘wasn’t’ supposed to eat. I was conflicted between wanting to be pain free and needing to eat for comfort.

It was hard. Every thing about that season was difficult. I felt as though Endo was taking too much away from me – first my ability to perform and then my comfort food. What was a girl to do?

It had never occurred to me that I was an addict. I was addicted to the bad foods. My body was in serious pain but I couldn’t comprehend how I would survive without my staple foods. Coffee without milk seemed like a bad dream. Sugar-free tea seemed like a punishment, and my body needed a reprieve.

DEAR eNDO wARRIOR,ONE DAY YOU WILL FIND WHAT WORKS!

A lot has changed since then, I am stronger and wiser now. I have tried many things: hormones, pain killers and diet changes. Through the process the question that I have learned to ask is, ‘ How does this form of treatment make me feel?’. The first couple of days of quitting wheat made me feel depressed, foggy and sluggish. Earlier in the journey, I would throw in the towel on the third day because the headaches were driving me nuts. Little did I know that freedom from wheat lay a few days down the road.

There is no one-size-fits-all treatment. What one woman sings at the top of her lungs works, may have you crawling on the cold floor in regret. Take the advice and suggestions that you receive with a pinch of salt. Do your research, pray and then give it a go.

Hormonal acne has humbled me. It has taught me that not everything I try will work. And I have tried lots of things. I remember one time, I read that if you apply your morning urine on your face, your acne will disappear. The good Lord saved me from trying out that option, through it crossed my mind severally. But I have tried neem soap and lotion, shea butter, tomato juice, potatoes, lemon, honey, yogurt, steroids, black soap, coconut oil, olive oil, almond oil, sandal wood, turmeric, apple cider vinegar, rose water, lots of cleansers and moisturizers. Phew, that’s a mouthful but I’ve tried many things and most of them have not worked. I’m still here, hopeful that I will find what works.

I’m now trying to treat it from the inside-out. I’m diligently taking my morning elixir  which consists of ACV, honey and cinnamon in warm water. I’m using bentonite clay on my face, we have to thank God for this gem, it works. I’m drinking lots of water and I have cut out dairy from my diet.

I won’t stop trying. I believe that one day, God willing, I will hit the jackpot.

Hang in there, dear warrior. Keep trying, keep fighting and keep shining.

Ess

 

Listening To The Whispers

Conversation is food for the soul. Having insightful conversations refreshes me. I enjoy listening out for details, chiming in and processing the information later. It never occurred to me that my body would try and communicate with me at any one time. I used to saunter through life without a clue that the pain and symptoms were my body’s way of trying to get my attention.

Hormones are powerful little things, trust me, I have learned the hard way. Puberty humbled me enough to respecting these chemicals. From the acne that wouldn’t go away to the Endometriosis symptoms; my body was constantly trying to tell me that my hormones were imbalanced but I was too distracted to listen. I screeched to a stop in my passive tracks when I couldn’t walk because of the pain.

Pain is the body’s way of saying, ‘Help me!’. Excruciating pain has taught me that I need to listen to my body when it whispers before it screams and I can’t walk anymore.

2020 SummerPet Picnic!

Over the years I’ve discovered that it’s difficult to identify abnormal symptoms when you don’t have a baseline to work with. Finding the baseline takes time. One has to listen to their bodies daily and take note of the symptoms and emotions.

I’m kinder to my body now. I’ve chosen to be deliberate as I listen to her speak. I take note of the symptoms that I experience after eating food, experiencing stressful seasons, being on medication, and using beauty and cleaning products.

It has helped me feel more in control. I’m able to avoid pitfalls and the pain that results from bad diet and lifestyle decisions.  I have managed to be constipation free through watching my diet. After years of experiencing pain and discomfort, I can eat and have a bowel movement without tears and the help of softeners.

I have learned to pay attention to the whispers so that I won’t be paralyzed by the screams.

 

Drowning On Dry Land

I have struggled with chronic fatigue for half of my life. It’s one of the perks of having Endo. On top of being inflamed 60 percent of the time, you have to deal with being tired all of the time. There is nothing exciting about feeling sluggish, in fact, it’s hard to be excited about anything.

Seven years ago, a friend of mine was tired of hearing me say how fatigued I was day after day, so she gently told me, “Ess, you needed to suck it up and find another response. Perhaps you need to pray a little harder.” Deep within, I was sad that I couldn’t shake off the feeling. It wasn’t just in my head, it was in every fiber of my being. I felt like on top of losing to my period every month, I was losing to life every single day. I was drowning on dry land.

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The thing about living with an invisible disease is that you hear all sorts of comments minus the sensitivity your heart desires. I was told to pray some more because Endo is a curse, exercise because endorphins would do me some good, and find a shrink because it was all in my head. I tried all three strategies, but I have had to change my approach over the years.

There is a desperation that comes with being sick, you can try anything. I stopped judging people who go to witch doctors for help because of sickness or believe in seemingly skewed doctrines. When pain and despair threaten to tear you apart cell by cell, you become desperate enough to believe in a higher power’s ability to save you from drowning and dying slowly.

To combat the fatigue and sluggishness, I am using Apple Cider Vinegar (ACV). I have one tablespoon of ACV in warm water with honey, lemon, and cinnamon every morning and my energy levels are off the charts. I’m a little energizer bunny, I actually wake up excited to to see the day.

I’m still fighting other battles but I am definitely not drowning on dry land.

Ess

Let’s Talk About Periods And Endo

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Join me for a Twitter Chat with an amazing panel hosted by @MtotoNews today from 3.00pm – 5.00pm EAT to help break the silence and build awareness about the fundamental role that good menstrual hygiene management (MHM) plays in enabling girls to reach their full potential. The discussion shall also focus on highlighting solutions that address these challenges.

This year’s theme for Menstrual Hygiene Day is: Education.

“l’m also excited that Endometriosis is part of this conversation and we shall elaborate further on the how a normal period should feel and look, Endometriosis and the warning signs to look out for. Every girl needs to learn to listen to her body when it whispers, so that she won’t be bedridden when it screams.”

#MHM
#menstrualhygieneday #menstrualhygiene #periods #pain #endthesilence #endometriosis #endometriosisawareness
#yellowendoflower #girlchild #hygiene

 

The Workout Hiatus Has Come To An End

I’m determined to get my sexy back. ‘Where had she gone to?’ you ask, well, I seem to have lost her somewhere between being pregnant and lactating. I’ve been pregnant twice in two years, my body has ballooned, carried life and found a new form. The thing that I have learned about my body is that it’ll never quite be the same. But that’s not an excuse to let it go.

The WorkoutHiatus HasCome To An End

The gym is not really for me. The last time I seriously decided to work out I ended up in an operating theater having my second laparoscopy to remove endometriosis adhesion and a burst appendix. After that surgery, I took the doctor’s advice seriously. For a long time, I made ‘take it easy’ a way of life, but I miss being fit. Climbing Mt Kilimanjaro and taking part in a triathlon are still on my bucket list.

After I had my first born, I was the heaviest I’ve ever been. I woke up one day and decided things had to change. I stopped taking sugar, dairy and reduced my wheat consumption. I worked out at home and I was able to lose the Lupride weight that I had been carrying around for years. Tiffany Rothe, God bless her, really helped me work out and I loved the results.

After the second baby, I’ve taken longer to start working out. There was so much going on and I wanted to make sure that the wound has healed. But I’m back! Yesterday was my first day and I felt great. I’m doing low impact workouts that won’t leave me feeling inflamed. I had a spring in my step yesterday, I was feeling on top of the world. Today, on the other hand, I’m feeling muscles that I didn’t know existed. Lactic acid is at work. But I know that my body will be grateful, well, eventually.

Before you begin a regime please consult your doctor. Go easy on your body and choose a workout that suits your needs. What works for one woman may not work for you. Listen to your body and enjoy your new regime.

Blessings,

Ess

The Diary Kenyan Endo Warrior: My Journey With Hormonal Acne

I’ve struggled with hormonal acne for well over ten years. As a teen it was nerve wrecking. One day I woke up with pimples on my face that seemed more like mountains, and they just wouldn’t go back to where they came from. I was told that apparently acne during puberty runs in the family and that it would disappear once puberty was over. I waited with baited breath, but it never disappeared. I’m well in to my twenties and I still struggle with acne.

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Seeing a dermatologist didn’t quite help, the medication set me up for greater disappointment. I tried topical creams, oral medication, different facial cleansers, toners and moisturizers. The only time that my skin has been smooth, I have been on a form of hormonal therapy. Smooth skin and manageable periods were about the only positive effects of the hormones on my body. Despite the acne, I am much happier off the hormones.

The acne intensified when I had recurring ovarian cysts. But not even that prepared me for the horror that was acne during my first pregnancy. Oh my word! I had pimples on my face, chest, back and arms. It was horrible. Horrible! They weren’t just pimples, they were cystic bumps, that would scar if you tried to burst them. Yes, I know that shouldn’t burst a pimple, but man, sometimes all the things that you should do don’t seem to work, so you result to throwing your hands up in the air and just bursting them. Because they are yellow, shiny and ripe (read: gross) and you can’t wish them away. The number of prayers that I have said for my face, I think that there is a scribe in heaven who has almost run out ink.

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I was listening to a podcast on hormonal acne and endometriosis, and the thing that shocked me is that Paige’s dermatologist told her that the life cycle of a pimple is about two months. That means that a topical treatment may not be enough to get rid of the pimple. You need to heal from the inside out.

An endo sister encouraged me to choose three products and just be consistent. So I chose to keep it simple with more like five products. I am using the Simple cleanser, Rose water to tone and Simple moisturizer. I scrub twice a week and put a sandalwood and turmeric mask every week. Keeping my hair off my face is also helping, goodbye versatile hairstyles.

On the inside, I am still pursuing (the somewhat elusive) hormonal balance. I’ve been craving (and satisfying the craving for) lots of dairy. I need to find alternative sources of calcium and take my supplements. I want to detox again to help reset my body and then I can watch what I eat.

I decided a couple of months ago not to reduce my self esteem or worth to the presence or absence of pimples on my face or chest, arms and back.

The truth is, it’s not the worst that it’s been, and I am relieved, but I’d like to balance my hormones naturally. So, here’s to resetting my hormones and getting smooth(er) skin.

Have you struggled with hormonal acne? I’d love to hear what has worked for you.

Blessings,

Ess

 

 

The Cheat Meal Is Just Not Worth The Pain

When I moved to Mombasa, there are two things that I absolutely enjoyed, going to the beach and eating the local cuisine. I just couldn’t get enough of the mitais, mahamris and biriani. My body on the other hand, was not too pleased. If anything, it was having a hard time processing the wheat, sugar and high amount of fat. My face looked like rocky terrain, it was screaming ‘You need to stop!’ but my taste buds were in a mini-heaven. And my taste buds were boss. So I kept struggling.

From a tender age I had bouts of constipation. This was made worse by the Endometriosis adhesion that were on my large intestine. When I moved to Mombasa, it got worse. My diet was perfect for constipation. So I would eat happily and then wail in the bathroom. Each and every day. In retrospect it seems like madness.

The Cheat Mealis Just NotWorth the Pain

Then one day, I had enough! I decided that though the mahamris and mitais were tasty, they were just not worth the pain I felt when I pooped or the pain during and after my periods.  Nothing was worth that pain and I needed to start saying ‘NO’ to my taste buds.

Over the last two weeks, I’ve had conversation with Endo warriors who told me that the food that they avoid (wheat and dairy)  is just not worth the pain that they feel when they eat them. They’ve both felt the proverbial straw that broke the camel’s back.

Is the cheat meal worth the pain that you feel? Is it worth the hours spent in the bathroom, praying, trusting and hoping that the pain will end? Is it worth the pain during and after the periods?

I’ve asked myself these questions and my resounding answer is NO!!

What has your food and pain journey been like?

Blessings,

Ess

 

The Kenyan Endo Story : Faith Muraya

Endometriosis is an invisible disease. Just because you don’t see it doesn’t mean it doesn’t exist. Pain has been normalized and so has the use of painkillers. Faith Muraya gives us a glimpse into her life as an Endo warrior. She shares with us her journey of pain, and the lifestyle changes that she has had to make.

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The journey of Periods and womanhood is the norm for women. As with most girls, my periods begun in high school. To be more specific, mine begun on a fantastic holiday in Naivasha where I now had to explain to all why swimming was not an option.

 

I am now a 25-year-old daughter, sister, cousin, niece and, for three months now, a proud wife.

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From the information I gathered, my endometriosis began in high school when I was around 17. The periods became more intense. I would narrate the pain to my mum who would tell me it is okay to pop a pill. I always thought lightly how my mother took comfort in pills not realizing my mother and I faced, and still face, the same battle.

 

As a teen I had severe acne, and the dermatologist prescribed birth control pills. The relief was instant. The pain decreased. At such a tender age and not knowing the side effects of pills, I began to experience anxiety, depression and heart palpitations. I was a newly initiated health freak and I got to reading. This method was not going to work. I stopped and so did my menstrual cycle. I uncovered that I loved to read about health and wellness. I become a vegetarian. Yes people, by choice. And let me tell you my family took turns at challenging my new lifestyle. I am glad to say 9 years and counting. The diet change made a small difference on my pain levels.

 

For over 5 years, I continued with Ponstan, Panadol and hospital visits to relieve the pain. One major symptom held me down every month, I was fatigued.

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Yes, 18 and fatigued. I was still not aware of endometriosis. I continuous blamed myself for not being good enough. That I was lazy. So I exercised two to three time a day. Pushing my body further into a vicious cycle of fatigue, insomnia and pain. I would bloat so much that I could not button my trousers.

 

 

In 2014, as I went through the wild fun of university, I began to drink and neglect my health. With school and a part time job, my body began to deteriorate and even though I was not eating well. I had gained 5 Kgs. What could this be? I was well rested but exhausted no matter how much exercise I did. The weight would not budge. Then my period did not come for one, two, then three months. I panicked!

 

With an insurance cover I insisted on getting during the year, I took to the hospital. The doctors told me I was pregnant and my hormonal balance was causing the issue. This was without any positive urine or blood test. Doctors!

 

As my symptoms grew worse, I researched my symptoms and diagnosed myself with either an ovarian cyst, PCOS (Polycystic Ovarian Syndrome) or endometriosis. The next time, I marched into the hospital and demanded an ultra sound. And lo and behold there is was a 10cm * 10cm ovarian cyst in my right ovary! The doctor did not even apologize for the misdiagnosis. After three months I had had enough, I packed my scans and patient history never to return to the hospital again. I booked an appointment with a gynaecologist who came highly recommended.

 

With my appointment on the Monday, I continued my weekend with hope. Unfortunately, my ovarian cysts ruptured, at the time I had no idea. I fell to the floor in agony, sweating and feverish as my boyfriend confused helped me into the shower for a cold rinse. The pain subsided and I insisted I was fine to wait for my appointment.

 

In the morning, my boyfriend insisted on accompanying me. When I got to the clinic, the nurse took my temperature and blood pressure asked me how and felt and left. Two seconds later the gynaecologist entered the room and confirmed the tests he then asked me if the night before I had suffered severe pain and I confirmed. He calmly explained that my cyst had ruptured and I had internal bleeding. He drafted a letter for surgery the same day and off I went. Emergency laparoscopy surgery! At this point, I was scared out of my mind, I was not mentally prepared for this. The surgery was successful.  As I sat there in bed, my mother took to the university with doctor’s letter for leave of absence almost coming empty handed as the university did not understand. With only two weeks to recuperate, I took to the internet, YouTube videos, articles etc. I began my lifestyle change.

 

When I resumed university, a stinging pain began to torture me. The doctors confirmed that an infection was imminent and I had to rest. It was either I failed my classes for missing them, or the infection spread. Neither was a choice. This is when I accepted help. My boyfriend took to helping me with life. Feeling vulnerable and weak almost sunk me.

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I discovered Ayurveda in the quest to grow my hair. That is a story for another day. Ayurveda has a lot to offer in natural ways to heal your body. I use Eve Care by Himalaya Herbal healthcare. This helps stabilizing my hormones and diminishing the pain significantly. I take it for six months and it keeps me going through the year. This does not work alone. My diet has changed through the years, coffee or anything with high caffeine causes the pain to return instantly. I rarely eat processed food, no sugar or junk food. This year I’m on the quest to have a gluten free diet, needless to say, I’m struggling.

 

Last month, I had my first flare up in two years. It’s said that after two years after surgery the symptoms are more than likely to return. I had been drinking a lot of coffee to get through the day for one year and my body was done. As the month began, I started vomiting every morning. I could not eat. I started to gain weight, I have chronic backache, pelvic pain, fatigue, fainting and hair fall. For one year, I have been deemed ‘overwhelmed’ at work. Embarrassed and ashamed, to share the real story, I said that this year, It’s about accepting the situation and acting to change it.

 

 

The challenges of endometriosis mean that as an outgoing lady, I’m easily reduced to a crying helplessness due to the pain, fatigue, confusion, frustration. Chronic fatigue can make a professional career difficult. Where do I get the strength to get to work? to be productive? The constant explaining to friends and family. And of course those who doubt you.

 

Now that I’m married, I have been advised by gynaecologists to get a baby as soon as possible or I may struggle in future. My husband and I are left with the decision to wait or believe in God. He is my Warrior.

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As I type this article, I have spent the day at Aga Khan Hospital. Something has changed. I begin chapter 2. I urge all my sisters to be you, research and the most crucial action support each other.

You can follow Faith on Instagram and connect with her on Facebook.

Thank you so much, Faith, for sharing your journey with us.

We pray that you will have many pain free days ahead and babies to fill your quiver, all in God’s time. Grace upon grace unto you.

Blessings,

Ess

The Kenyan Endo Story: Rachel Shivachi – Part 3

Recovery was not a walk in the park for Rachel. Post surgery complications made her life rather difficult and her family and friends decided to take her back to India again.

She shares her experience below:

While we were in India, it was Zulekha’s birthday and we had a little celebration at the apartment.

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When I was well enough to travel, we came back to Kenya. I wasn’t getting any better and I had to be readmitted at Nairobi Hospital. I was in adult diapers due to secondary fistula and I kept getting high fevers due to the infection from the kidney stents.

 

I was on antibiotics for more than 10 weeks before friends and family decided that I go back to India for the removal of the stents and catheter. Upon going back to India I was found to have severe jaundice & infection from the stents which the body was rejecting.

 

Below is an excerpt that I wrote after my second visit to India.

25th November 2015

 

To my family and friends who made it possible for me to see this day.

Psalms 105 :1-2

Psalms 115 : 12 -15

It’s great to be back home where everything is so familiar, friends and family, food and mostly language isn’t a barrier because you are spoilt for choice with at least Swahili or English to choose from.

 

We thank God for his mercies last forever and ever. He has remained faithful and if you seek him he shall not let you down. Numbers 23:19

 

We got back from India on 18th November. The two procedures were successful: removal of the DJ Stent and Ureterotomy.

 

I could barely walk after 12 hours of travel, but God’s favor was with us all the way, I managed the trip with no incidences despite the state of my health.  The chills, fevers and the pains were somewhat controlled. All I kept reciting was Psalms 23.

 

Upon our arrival at Columbia Asia Hospital, within five minutes, we were whisked into the Chief Urologist clinic and I spared no details of my journey of the past 10 weeks post surgery in Kenya. The doctors were very concerned and a myriad of tests were carried out, CT scan, usual blood and urine tests including Culture Tests (read what culture tests are for and their importance). I was admitted the very next day after the results were availed. I was also found to have severe jaundice because my liver was straining from the medication.

 

The initial procedure to be carried out was just removal of the stents, cystocopy, however, this changed.  Dr. Manohar, the Chief Urologist, later explained that I had suffered infection (Klebsiella Pneumoniae) from the DJ STENTS, which is a normal occurrence  sometimes with such procedures.  This he mentioned should have been picked during my admission in Nairobi hospital in by having culture tests done and immediately the stents should have been removed.  Additionally, the removal of the Catheter was premature causing my urethra, bladder distress.

 

I had to be on IV antibiotics for 12 days to clear the infection even after the procedures.  Amazingly, I was discharged from hospital after two days, and five days later, I could comfortably walk, sit, eat; I was recuperating well. Daily visits to the clinic were for IV injections at the ER and simultaneously check ups on my recovery. Jeremiah 30 :17

Doctors treat But God heals .

God is faithful as I could can now walk, sit and pass urine without moaning, screaming and crying because of excruciating pain. I could now sleep on my tummy or either side and sleep through the night without chills and fevers and endless trips to the bathroom notwithstanding the spasms from the DJ Stents. I could now control my bladder and the trip to the bathroom didn’t have to be an emergency. I could now eat without throwing up after every mouthful. Psalms 126:1-6

 

The liver infection was taken care of by the supplements to rejuvenate it. I chose not to worry about it.

 

I have now discarded the use of Adult Diapers because my bladder is now back to normal.

 

The only medication I came back with were supplements.

 

One more thing, removal of the ovaries reduces the aggression of endometriosis as the disease thrives on hormones. However this hastens menopausal symptoms such as hot flushes, mood swings and also low libido. These symptoms shouldn’t worry you, again diet and exercise will carry you through.  research on the same. In extreme symptoms, there are supplements too that can help. Please note, not HRT (hormonal therapy) as these may predispose one to breast cancer. Cranberry tablets should be considered. Again, read and seek advise where necessary. So, when you see me on a very cold morning flapping a few pages of the newspaper seeking cold air against my face, just open the windows for me 😂😂😂, it’s what my friends call menostop. I promise to be happy always. Proverbs 15:30.

 

My medical follow up is every three months for urine culture tests, liver function test, CT scans to ensure the kidneys, ureters and liver are well healed.

 

I have chosen to give details some of it not so pleasing (gory details) for those out there with terminal illness or going through a similar condition as mine. I have learnt the following in the last few months:

 

  • Support systems are important, be it family or friends. NO ONE can walk this kind of journey alone, you will easily give up and die. Treat people well, care for them and when you need them they will be there.

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  • He’s a forgiving God and always faithful no matter who you are, don’t let the devil cheat you that you are only going to God during distress and you shy off renewing that relationship with him. 2 Corinthians 5:17

 

 

  • If your body doesn’t feel right, see a doctor, ask questions and always seek a second opinion. Don’t ignore health issues, I have had friends, family who have lost their lives when they could have lived if the problem was nipped at the beginning.

 

Endometriosis has no cure but you can continue to have quality life with lifestyle changes, diet and exercise. Basically lots of fresh vegetables and fruits, have three colored fruits everyday,  additionally eggs, fish, nuts like ground nuts and almonds.  Cereals such as beans, green grams are recommended.  Meditation is also key, yoga too.

 

Once again, my family and I are so so grateful for standing and walking with us during this difficult period. We were and are still overwhelmed by your support both financially and spiritually.  Your prayers were not in vain.

 

God is good all the time and that is his nature!

God bless you abundantly! Numbers 6:24 -26

 

❤ Rachel

 

How are you doing now?

I am well and do not have any pain at all however secondary menopause has kicked in and the effects can really put one down, the hot flashes, mood swings, depression, low libido and lubrication, tiredness and lack of energy. Though supplements and gels really do help. I have gone through the anger -denial -acceptance process however I still cannot get myself around expectant mothers and new born babies, I get very emotional.

 

My children are all grown up now: 10, 12 and 20 and have been very supportive through the years. They have been through a lot as well since my marriage was equally on the rocks but we have since re-united.

 

Lifestyle changes had to happen, no wheat though I have cheat days but rarely, this was advise from the doctors. I also do lots of vegetables and fruits. No soda at all, fresh juice mostly and no junk. A little exercise and I have to maintain a certain weight. Oh and an egg every day.

 

They say Yoga is a very good relaxant and if practiced will help with the menopausal effects

 

But most of all I thank God for the quality of life I lead right now.

 

Rachel’s story has brought me to tears. She has reminded me that God is good, and that is His nature. Thank you for being vulnerable with us and letting us into the most painful and private times of your journey with Endometriosis.

Blessings,

Ess

The Kenyan Endo Story: Rachel Shivachi – Part 2

Endometriosis is a multi-faceted disease. Hysterectomy is not a cure for Endometriosis. Rachel shared her medical experience in Kenya yesterday. After that, she sought medical intervention in India, not once, but twice. She shares her first experience in India below.

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My friend Zulekha and I (she would be my medical attendant whilst in hospital) left for India on August 17th 2015 armed with all my past/recent medical records that included CT scans, MRI doctors notes you name it.

 

Upon arrival in Bangalore after an 8 hour flight we were received by the hospital’s arranged transport and driven straight to the hospital.  We were thereafter ushered into the international patients lounge and of course welcomed with soft drinks by very pleasant staff.  All the paperwork was ready and put together and we were immediately sent to our consulting gynae. Things were happening fast; in exactly 4 hours all tests had been done including MRI et al. We were later ferried to the apartment where we would rest until our next day’s appointment.

 

These guys are professionals and everything is computerized. Medical tourism as they call it is serious business and a big revenue earner for them, they are efficient!

In summary, the first week and a half were spent shuffling between more tests and consulting with the three senior most consulting doctors, Gynae, Urologist and GI surgeon; and decision making. My condition had become complicated.

 

I was now being treated for endometriosis stage 4 which means the endometrial tissues were now attaching themselves outside the uterus (since this was already out ). Thing is these tissues can attach themselves to any organ.  In my case, they had aggressively grown and attached themselves to the right ureter and my bladder.  This explained the recurrent UTIs and abdominal pain and sometimes lack of control of my bowels.

 

An interesting point to note is, a few weeks before leaving for India I had an MRI done in a prestigious city hospital including other tests and they were all clean, are these machines different?  I ask myself or is it the lack of knowledge on interpretation of these complicated reports or is lack of training? Not to mention the cost, this had almost dissuaded me from my trip.

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The results I got after week in India led to the involvement of three specialists. This was going to be a very sensitive surgery so they kept informing me. I remember being given a whole day to consult back home on the options availed.  One of them being a hormonal jab every three years but the side effects would be equally damaging.

The surgery was scheduled for August 26th at 7:30am, notwithstanding the risks already explained. I was prepared and we had our praying session with Zulekha before I was wheeled off to theatre.

This was my sixth surgery due to endometriosis. I hoped it would be the last.

I was going to be in theatre for six hours. I was taken through what each doctor’s role would be in relation to the endometrial tissues. The urologist would ensure my kidneys were safe from harm, whilst also checking the damage to the bladder. The GI surgeon would check the level of damage from the colon to the rectum. Whilst the gynae would remove the endometrial tissues from any possible place they could identify, and do a total cervical clean-up which included removal of the ovaries; the biggest contributor to the advancement of the condition. Most important to them was the pain management, so the epidural procedure was carried out while I was awake; I can never ever explain the trauma of having that done. I’m yet to get over it.

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They asked me to pray and have faith before they put me to sleep.

 

Pause! This is where I also take issue with us, the patients, do you read the doctor’s reports, summary discharge from hospital. Do you request for interpretation, why the particular course of treatment, etc? I remember arguing with the Indian gynae about the hysterectomy done back in Kenya.  In the numerous reports I had one report that stood out, it indicated that I had gone through a total hysterectomy but I argued with her and told her as far as the doctor had informed me it was a partial which meant I still had my ovaries et al, imagine my shock! We resolved by agreeing that once in surgery she would confirm.

 

I woke up hours later with several tubes inserted in various parts of my body. The catheter, kidney stents, a tube to discharge the fluids in my abdomen, bandages over my abdomen and a load of IV meds to take care of infections and pain; of course these I saw from the images Zulekha took after I insisted.

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Remember the total hysterectomy, it was actually partial so the doctor confirmed. It was so embarrassing!

To me the actual journey had just began.

Allow me to digress, earlier in 2013, I had rushed to Kakamega with my friend Sabaya to visit my old man after he was found with an enlarged prostate. Our biggest fear being it was cancerous, however , God is good, it wasn’t,  the surgery was successful. This is what amazes me about Men, they don’t share especially when it’s medical, you would be surprised even to their spouses. Would you believe the old man hadn’t passed urine for over a week, so at the point of getting him to hospital, it was a dire situation. He was stubborn and could not be admitted, so we took him at home. For most part of the evening he struggled with the catheter as it kept leaking and it bothered him, we completely ignored him, it made him comfortable. He even joked about it later on.

Zulekha can be gentle yet tough, day by day she informed me how I was progressing and would provide the necessary support including stolen showers (as I was not allowed out of bed, she would make it happen). She was strong for both of us and she asked and repeatedly asked for clarification when we were not clear what was going on.

Four days later it was time to leave a hospital and recuperate back in the apartment. As I got ready to leave the hospital I was presented with an adult diaper and a catheter bag. I was devastated despite the fact that Zulekha had prepared me for this, I guess I had blocked my mind to it. This was all occasioned to the mess they’d found in my abdomen, Fistula was inevitable! !

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So here I was with a pee bag strapped to my leg and wearing diapers. it was humiliating! All because of endometriosis.

HOW DID I GET HERE ?

Was it it ignorance? or sheer bad luck , is it a curse?

Should I have tried to learn more about my condition?

Should I have asked questions and more over the years?

Was I embarrassed about the condition?

Should I have sought second opinion? Should I have challenged the doctors here in Kenya whenever they carried out this and that procedure?

I’ll share part 3 of her story tomorrow. Rachel is a warrior! Her experience reminds us that Endometriosis awareness is crucial. The pain is real. Endometriosis is much more than a painful period. It needs to be treated seriously.

Every Endo warrior needs a Zulekha in her life. A friend who is willing to stand with her, cry with her and fight Endo with her. Zulekha you are a pillar of strength; a friend in times of need. May the Lord reward you.

If you would like to share your story, please send me an email and I will get back to you.

Blessings,

Ess

The Kenyan Endo Story: Rachel Shivachi (Part 1)

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An Endo Warrior is a fierce and brave woman, one who fights many battles that don’t meet the eye.

Over the next couple of days I will be sharing the story of Rachel Shivachi. A woman whose story has moved me to tears. She has known pain, hope, grace and strength.

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I am a mother of three young adults, a wife, sister and a friend to many. I have worked in the Telco industry for more than 15 years in the sales department, high pressure job but I enjoy it. I turned 42 years last month and I believe in Live Life, Love Life.

Here goes my journey with Endometriosis and Adenomyosis.

if you have been diagnosed with the above I can say that there are going to be long days ahead however with proper management, care & support this need not stop you from enjoying life, ladies, research and read and always seek second opinions to be able to make the right decisions. I am grateful that we now have a forum that helps demystify this disease as well as providing the much needed support.

Very little is known about these two diseases and so when in and out of hospital and people ask what you are suffering from, almost immediately one goes to Google to understand this long worded condition.

I will still not go into the details of what the disease is (this is to encourage but you to research and read about it) but I will take you through my experience from an early age.

My menses were a nightmare from an early age of 16, I would not attend school or college including work a few days before and when they came.  Instead I would spend my nights on the cold floor wailing and screaming because then it was what I knew best.

My father having given up on Buscopan and Panadol introduced me to his painkillers – Ponstan. I remember in form 2, dad was so frustrated that he traveled to Kakamega to get miti dawa coz he couldn’t take the wailing anymore. At this time we discovered Dr Nyamu and he put me on contraceptives at the age of 16 and they worked for at least 6 months. So yes there you go, the disease thrives on certain hormones. But then the contraceptives had side effects that we had to discontinue. Before my form four end of year exams, I had to get medication to hold off the periods so I don’t have the pains. This meant that we had to learn pain management.

I don’t remember the last time I traveled without a cocktail of meds in my bag. I’m the first aid box in my own rights. Remember the side effects of long term use of some of these meds. My stomach lining is eroded to mention but a few.

I’m lucky and blessed to have had children so am told but my pregnancies have always been difficult and through caesarian section. I later learnt that CS also predisposed me to the adenomyosis.

I have had 8 Surgeries in total, which started in 2005 with the accidental removal of my appendix whilst it was an orange sized cyst, and, a mass in the uterus. I have had to learn medical terms such as laparoscopy and laparotomy.

So in between the years it was ovarian cysts and abdominal mass that would be found sitting in my uterus and they would be removed through surgery.

The feeling of being pregnant all the time, endless abdominal pains, unplanned menses, long periods of menses, you name it, the disease can drive you insane. Not to mention it limits your social life as you never know when the pains will strike. Nairobi hospital ER became my go to place .

I remember the gynae recommending a one year treatment in 2012 of a hormonal drug called Lupride,  a jab to your abdomen on a monthly basis.  The treatment was expensive, about 10,000/= a jab, and although it provided relief the treatment was a nightmare. I almost lost all my family, friends to name but a few, Leah Murimi, Zulekha Osman, Juliet Kanana, Mbathi Mutuota Penny Waweru; due to the side effects, hot flushes, extreme mood swings et al, but they held my hand.  Immediately we stopped the treatment, endo came back, quite aggressively and I slid into the next phase.

Have you ever gone to the Gynae, he feels your tummy and tells you, you are pregnant and you argue until he eventually sends you for a pregnancy blood test & scan and instead it’s a mass in your uterus and not a fetus? That was the norm!

I will never forget specifically December 2013, I was in so much pain I could not sleep, sit, eat or think because of pain. The abdominal pains, the backache was extreme and I even developed diarrhea. I was over-dosing painkillers just so that another day could come whilst I was avoiding going to hospital, I had the lousiest Christmas. After Christmas and upon arriving Nairobi I was rushed to Nairobi Hospital where my gynae advised for Laparoscopy which would give me relief. Unfortunately, three months later the pain was back and worse than before and eventually in May 2014 when I couldn’t take the abdominal pain anymore I opted for a partial hysterectomy. This the doctor assured me would give me relief for several years.

This was a BIG mistake as I learned later since my ovaries were left intact and my condition was aggressive so it was in vain.

By April 2015 the abdominal pains were back and this time around I developed recurrent UTIs (Urinary Tract Infections) – every other week. Jan Mwenjwa became my office nurse for these emergencies.  Thanks to her I don’t know how I would have coped.  I always looked pregnant, was always bloated and I could only sleep on my right because I had this mass that would pull if I dared sleep otherwise. I had to wear a pad every other time just in case. I always had brownish discharge which was sometimes smelly.

I was very afraid!

In August 2015 friends and family came together and we resolved to seek specialized treatment in India.  We had a harambee and thanks to my wonderful Orange colleagues & family and in August 17th I left for India with Zulekha one of my two best friends that I have.

I’ll share part two of her story tomorrow.

If you’d like to get in touch with her, you can reach her on Facebook.

Blessings,

Ess

Dear Kenyan Endo Warrior, You Don’t Have to Walk Alone

Living with endometriosis can be hard. A majority of my memories are lonely, scary and empty. But, times have changed. I know that in the event I have a flare up there are women that I can call for advice, support and prayers. Women who get me, and don’t think that I am faking the pain or being unnecessarily sad.

Dear Kenyan Endo Warrior

The Endo community in Kenya has grown. It warms my heart to see the different people shining their lights and encouraging other women. The truth is just because, I walked alone doesn’t mean that other women should walk alone.

If you are looking for women to walk with, cry with and navigate this season with, please see below:

Endometriosis Foundation Of Kenya

It was founded by Elsie Hadassah Wandera. You can read her Endo Story and see what her journey has been like.

There’s a closed Facebook Group for women living with Endometriosis, a Facebook Page to create awareness about Endometriosis and a Whatsapp Group to support Endowarriors in Kenya.

They have meet ups from time to time.

Endo Sisters East Africa

It was founded by Doris Murimi.

They have an office in Thika at Gospel Preachers Church, Karibaribi, Thika, near Mary Hill Girls school. You can follow the conversations on their Facebook Page.

They have their first monthly meet up on Saturday 6th May 2017 at Cake Plaza next Prestige Plaza, off Ngong Road, at 3pm – 6pm.

They go to schools and talk to girls about Endometriosis. If you would like to invite them to your school, you can send them an Email.

Waiting Wombs Trust

It was founded by Editah Hadassah Trip. You can read her Endo Story and see how the Trust was born.

They have a closed Facebook Page where they walk with women who are waiting to conceive and encourage them.

They will have their first meet up on 17th June 2017 in Nairobi from 2pm at a venue to be confirmed.

If you are feeling overwhelmed and depressed and you would like to talk to someone, please send me an email and I will put you in touch with someone who can walk with you.

Please don’t suffer alone. As always, I am here to pray with you, cry with you and laugh with you, because I believe that one day, soon, we will laugh.

Blessings,

Ess

#TheKenyanEndoStory: Hadassah Trip

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It is always uplifting to read the stories of other Endo warriors who are braving through life and shining their lights. Our third Endowarrior is Editah Hadassah Trip. She is the founder of Waiting Wombs trust. Hers is a story of pain, grace and hope. She is walking with women whose wombs are waiting and sharing a message of hope.

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After our grand wedding in 2007, I wasn’t keen on conceiving in the first 3 years. We were on honeymoon hence I didn’t see any hurry. I had also lost my sister during child birth and it crushed me.

Fast forward to the fourth year, I experienced horrible cramps, visited a doctor and was treated for cysts. That was the beginning of our waiting journey and the medication process. I was put on some strong hormonal medication that nearly killed me, they had to be flushed out of my system fast.

I experienced my first “societal punch” when someone asked me to try different positions and stop wasting time. (I never lack sober responses for such questions – trust me )

We kept trying, started visiting doctors who confirmed that all was well with us.
I had a laparoscopic surgery in 2010 where the doctor removed 12 fibroids and 6 cysts. I remember asking him how so many growths could be in one petite person.
I recovered and went back to my normal routine.

Later, a pal gave me some herbal medication that worked for her after a long waiting period. This totally affected me and resulted in fresh cysts, said the doc. Reversing the effect was a painful process.

In 2014, I experienced another flare of pain and ended up in the theatre again, this time for an emergency open surgery. I was diagnosed with severe Endometriosis. Was put on the those jabs that drive you straight to menopause (at least some of us know what menopause feels like lol!). How do our mother handle hot flushes?
I remember one day fanning myself ( July) and a client asked me ” madam, ni kushuta ama joto?” (Madam, are you feeling hot or did someone fart?) lol!!
Anyway, I faithfully took the medication for 6 months. This time I was confident that I had recovered and my twins would come any moment – those twins are still coming :).

I have since gone for six Hysterosalpingograms which is an X-Ray to see the inside of the uterus and Fallopian tubes. I’m not doing it again because the last one left me limping, crazy medication, horrible herbs, uncomfortable procedures. At some point my hubby and I promised ourselves that we’d only visit doctors if we must. Oh how I hate hospitals!!

PREGNANCY KITS

I need to mention how uncomfortable I feel buying the pregnancy kits. Knowing that it could be another 200 shillings washed down the drain. I know you understand that feeling only too well. There’s a time I was sure that the babies had at least settled in (Dr. Google can be a monster eish!). I took the tests thrice just because I wasn’t prepared for another negative result. I even tried putting on a different set of specs just in case my eyes were a problem. Call it “honest deception”. I think I cried for an hour or so after finally accepting the results.  My eyes were so swollen the next day and I had to go to work. I survived

Anytime I was put on hormonal medication e.g Clomid, my reaction was extreme. In one instance, I developed severe Ovarian Hyperstimulation Syndrome. I react to everything! Literally!

THE OPINIONS OF OTHERS

Two months ago I was upcountry. An old lady relative approached me and said ” I saw the cause of your childlessness in a vision. Give me some money and let me pray for you “. Thank God my husband was there who politely told her off.

Some of the uncomfortable comments I have faced as I wait are:
” what are you still waiting for? ”
” you are pretending to be happy yet you aren’t”
” why are you wasting your husband?”
” you keep postponing this issue thinking you’ll be young forever- shida yako”

Why am I sharing this? Why am I still hopeful and waiting? Does it mean that I don’t have low moments? No. I do. Am human and a woman for this matter.
We have however accepted that children come from God. See the bible cases where ” The Lord opened wombs and conception occurred “? I cling onto such promises. I have faith that my conception will be natural because there’s God in heaven who can do the impossible.
Doctors can talk about infertility or barrenness but I don’t buy that, I am a waiting womb. Adoption is an option for us whether our Samuel comes or not. And as we wait, we’ll make the best childless uncle and auntie by God’s grace.

Should The Lord in His wisdom decide to withhold this blessing from us, we’ll still trust and serve Him. Doesn’t He have good plans for us? He’ll provide the strength needed to hang on.

PARTING SHOT

Let’s be encouraged dear ones. Don’t allow your current situation to define you. You are special, you are loved.

There may be pressure from within, from in-laws, spouses ,society and all, hang on. Even Peninah could only do so much until The Lord remembered Hannah.

 

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Her favorite flower is the red Rose. It is a symbol of love. Promoting family love regardless of situation.

If you know a woman who is waiting on the Lord for a child, you can refer her to Waiting Wombs for more information. You can connect with Hadassah directly on Facebook.

If you’d like to share your story on this platform, please send me an email via yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

The Diary Of A Kenyan Endo Warrior: The Game-Changer: The Day I Couldn’t Walk Anymore

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Dear Diary,

By the time I was 17 years old, I was pretty much used to painful and dramatic periods. I had somewhat accepted it as my lot. What else could I do? In those days I seldom heard of anyone going to hospital for painful periods. We resulted to be being amateur pharmacists. In retrospect that was SHEER. FOLLY!

All was well-ish until the day pain paralyzed me in the heart of Nairobi city while on Moi Avenue near a stall selling jewelry. That was scary. My body was overcome by such a sharp pain on the left side of my abdomen. I couldn’t walk and could hardly breathe. I felt hot, a warmth covered my body. I was scared yet I had to put on my brave face on, because the city center is not a place to show your fear when you can’t move.

I inched towards the jewelry stall and sat. God bless the woman who helped me with a seat. She tried to ask me what was going on but I was as clueless as she was. My abdomen was hot and I was balancing tears. Minutes felt like hours as I waited for the wave to pass. When it finally did, I got a matatu and went to school. By this time I was already late for my class. I walked as fast as I could to the school clinic and met the ever patient Dr. Jack. He believed me, he didn’t look at me like I was crazy.

He gave me a place to rest and then treated me for a bad Urinary Tract Infection. After a course of antibiotics, painkillers and urine alkalizer, the pain subsided; only for a few days.

Till next time,

Blessings,

Ess

The Diary of A Kenyan Endo Warrior: I. Am. Tired!

 

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Dear Diary,

I doubt that it’s normal to wake up tired, spend the whole day tired and sleep tired. For so many years this was my normal. My first response to the question ‘how are you?’ was Tired. But there’s only so many times that you can answer tired, until the other person gets, well, tired, of hearing your response. That was the story of my life.

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What I was more tired of, was being sick and in pain. Being sick is a draining process. It literally sucks out the life out of you, and the desire to live. When you have been in pain day after day, you want to cry. I vividly remember crying to God, praying that He would take the pain away. I was fed up of watching my life slip between my fingers. How badly I wanted to live life fully, but my body wouldn’t let me.

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It was more than just physical exhaustion; more like an all round exhaustion. When I found The Spoon Theory  by Christine Miserandino I was besides myself. Finally, someone had put into words what I had been struggling to say for a long time. Her description of Spoonies perfectly described me. “Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.”

I was tired but I realized that I needed more grace,strength and spoons.

To the Spoonie struggling to express her exhaustion, you are not alone.

Blessings,

Ess

5 Things To Do Before You Start An Endo Diet

A few years after I was diagnosed with Endometriosis, I found the Endo diet. It was nice to look at, but it was so much work. it meant giving up all that I knew, and so I started it for a short while, then I quickly fell off the bandwagon because I had not taken certain things into consideration.

Over the last couple of weeks, I’ve seen many women asking about the diet, and I thought I’d share some tips that I’ve learned over the years.

First off, IT WORKS! For the Endo warrior wondering if changing your diet makes a difference, well, it does, It may not reduce the pain completely but it makes you feel so much better.

5 things to do before starting an Endo Diet

 

Before you start the diet, I’d encourage you to:

1) Read about the diet

Do your research about the diet and internalize why you need to reduce the intake of certain foods. Understand the hormonal balance that you are trying to attain using food. When you begin to view food as medicine, it changes your thought process when you are serving food on your plate.

2) Know what you are dealing with

Endometriosis cannot be treated in isolation. Look back at your medical history and identify any food allergies and take them into consideration. What is good for one woman may not be great for you. If you have Irritable Bowel Syndrome or Ulcers, be sure to avoid any trigger foods that may seem healthy.

3) Make a plan

What they should tell you is that eating clean is not easy, Nah! It isn’t. It takes hard work, planning and self control. The food you are supposed to avoid is so easily accessible. Wheat products, taste and smell so good. They are affordable too, well in the short run.

If you want to be successful, you need to plan your meals in advance. Anticipate hunger. Find restaurants that serve foods that you can eat and enjoy. Look for locally accessible food substitutes. The ingredients that you read about online, may be costly. Remember that food is medicine.

Make your food exciting, eating clean doesn’t have to mean eating boring food.

4) Keep a food and feeling diary

The first couple of days, it is easy to get discouraged especially because you feel horrible being off wheat, dairy, soy and caffeine ( they are the popular ones).

Keep a food diary that allows you to write what you eat and how feel physically and emotionally each day. Remember that you may see results immediately, but you shouldn’t write it off until you’ve tried it for 2 months.

5) Love on yourself

Enjoy the journey. Invest in yourself, speak kind words to yourself. The battle is won in the mind, so you can’t expect to succeed in the eating department if you constantly belittle and doubt yourself. Love yourself for who you are and where you are at. View the diet change as something you are doing for yourself, not necessarily because the doctor or friend suggested it.

Some days we fall off, but we have to get back up. If food has been a crutch, try and find a new activity to do.

All in all, I wish you the very best. If you have any questions, please feel free to send me an email via yellowendoflower@gmail.com

Blessings,

Ess

5 Things To Do Before You Start An Endo Diet

A few years after I was diagnosed with Endometriosis, I found the Endo diet. It was nice to look at, but it was so much work. it meant giving up all that I knew, and so I started it for a short while, then I quickly fell off the bandwagon because I had not taken certain things into consideration.

Over the last couple of weeks, I’ve seen many women asking about the diet, and I thought I’d share some tips that I’ve learned over the years.

First off, IT WORKS! For the Endo warrior wondering if changing your diet makes a difference, well, it does, It may not reduce the pain completely but it makes you feel so much better.

5 things to do before starting an Endo Diet

Before you start the diet, I’d encourage you to:

1) Read about the diet

Do your research about the diet and internalize why you need to reduce the intake of certain foods. Understand the hormonal balance that you are trying to attain using food. When you begin to view food as medicine, it changes your thought process when you are serving food on your plate.

2) Know what you are dealing with

Endometriosis cannot be treated in isolation. Look back at your medical history and identify any food allergies and take them into consideration. What is good for one woman may not be great for you. If you have Irritable Bowel Syndrome or Ulcers, be sure to avoid any trigger foods that may seem healthy.

3) Make a plan

What they should tell you is that eating clean is not easy, Nah! It isn’t. It takes hard work, planning and self control. The food you are supposed to avoid is so easily accessible. Wheat products, taste and smell so good. They are affordable too, well in the short run.

If you want to be successful, you need to plan your meals in advance. Anticipate hunger. Find restaurants that serve foods that you can eat and enjoy. Look for locally accessible food substitutes. The ingredients that you read about online, may be costly. Remember that food is medicine.

Make your food exciting, eating clean doesn’t have to mean eating boring food.

4) Keep a food and feeling diary

The first couple of days, it is easy to get discouraged especially because you feel horrible being off wheat, dairy, soy and caffeine ( they are the popular ones).

Keep a food diary that allows you to write what you eat and how feel physically and emotionally each day. Remember that you may see results immediately, but you shouldn’t write it off until you’ve tried it for 2 months.

5) Love on yourself

Enjoy the journey. Invest in yourself, speak kind words to yourself. The battle is won in the mind, so you can’t expect to succeed in the eating department if you constantly belittle and doubt yourself. Love yourself for who you are and where you are at. View the diet change as something you are doing for yourself, not necessarily because the doctor or friend suggested it.

Some days we fall off, but we have to get back up. If food has been a crutch, try and find a new activity to do.

All in all, I wish you the very best. If you have any questions, please feel free to send me an email via yellowendoflower@gmail.com

Blessings,

Ess

5 Ways You Can Support An EndoWarrior

Endometriosis affects 1 in 10 women. This means, if you know 10 women, you know Endometriosis.

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The fact that it’s an invisible disease makes it difficult for women to get diagnosis and for people to relate with her and the pain. Because of the nature of the disease, and the societal norms, women find it hard to speak about Endo and even reach out for help.

It is more than just a woman’s disease, it affects the society as a whole. Women, daughters and sisters are affected. Fathers, husbands and brothers too.

5 Ways Tolove on an ENDOWARRIOR

Here are a few ways that you can support a woman who has Endometriosis:

  1. Believe Her

When she says that she is in pain, believe her. When she struggles to get out of bed, believe her. When she is too inflamed and bloated to fit in her normal clothes, and takes very long to get ready, believe her. When she says sex hurts too much, believe her. When she says she’d love to meet up but she just can’t, believe her. When she says she is on the verge of giving up hope, believe her.

Believe her. Believe her. Believe her.

The best form of love and understanding stems from a place of believing without a shadow of doubt that she is in pain and not pretending.

This understanding will help you be sensitive when you ask her questions and comment on her daily struggle.

2. Listen to Her

Hear her out, don’t dismiss her pain. Listen to her dreams, her fears, her jokes and her heart. Listen to her words and also to her actions; gently encourage her when she sinks into the valley of sadness.

3. Do Your Research

Take a personal interest in the condition and seek to be knowledgeable. There is a lot of valuable information on the internet. Read up about Endo, go onto forums and ask questions. Read the leaflets that come with the medicine that she is on. Research on

4. Be Present

Let her know that you are in this together. Go for the consultations together. Take an interest in her daily routine, encourage her to do things that help her. If she goes on the Endo diet, help her plan her meals. Join her in some of the meals.

5. Love her as she is

Don’t try to change her to be the woman you remember her being or the woman of your dreams. Love her as she is. Accept the challenges that she faces and help her work around them. Speak words of life and love.

Your support means a lot.

Blessings,

Ess

The Diary of A Kenyan Endo Warrior- The Warning Sign We Missed

Dear Diary,

Where there is smoke, there is a fire.

As a little girl, I had trouble with my bowel movements. I hated going to the toilet. When I felt the urge, I’d have balancing tears because I knew the pain and sheer discomfort that awaited me. My diet was fairly okay, and I tried to drink water and eat my pawpaw, but my poop wouldn’t move (pun intended). I was the preteen girl with chronic constipation, I was always tired and cranky. I envied anyone who could poop with pain and problems.

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When I hit puberty, things got worse. It was more like, out of the frying pan and into the fire. IT WAS HORRIBLE. Pooping during my periods was extremely uncomfortable. My tummy was very bloated and I felt a piercing pain as the poop moved through my intestines. Sometimes, I couldn’t walk, I would sweat, in pain, until it passed. Bowel movements became a serious prayer item. Around the same time, I experienced such discomfort when trying to pee. I’d go and sit on the loo but it just wouldn’t come out. I even thought I was stressed. I remember one time we went to climb Mount Kenya and I just couldn’t pee, other girls kept asking what’s taking so long, but it just couldn’t come out yet it hurt so much. After about 20 minutes of squat-waiting, I finally peed. My period came the following day, but I had no idea, then, that there was a connection between the pain and my menstrual cycle.

Little did I know, Endometriosis was nesting in my abdomen.

Love always,

Ess

 

The Diary Of A Kenyan Endo Warrior – My Struggle With Tampons

Dear Diary,

I’m still super excited about the pad dispensers, because I still can’t use tampons. Rather, I still choose not to use tampons. My struggle with tampons begun as a preteen. My mum told me that they were not for young girls, and told me that they could make me sick. Toxic Shock Syndrome was described and I got scared. I envied the girls in school who swore by them. They did not have the pad problems, you know, having to change all the time, no odour ( remember the time Always had THAT scent?). They could swim!! Oh, THEY COULD SWIM! I on the other hand, used to sit on the sidelines watching, enviously.

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Deep within I knew that once I was an older, out of the nest, I would use tampons. When I got an opportunity to try, it went awfully wrong. I could feel it deep within. It was so uncomfortable. The next time my period rocked up when I was least prepared and a tampon was what was available. That has to be the longest night of my life. That was discomfort 101. As if the discomfort was not enough, the flow seeped through. That day, I decided that tampons were not for me.

My biggest question has always been, where do the clots go? Where?? The flow is usually 80% clots, so the tampon definitely is not the most practical tool. Let’s not forget, how inflamed, tender and uncomfortable the pelvic cavity feels at that time. A tampon seems like a tool of the enemy at that time.

A few years ago, I detoxed and felt a newness and relief I had not felt in a long time. As I weaned off different chemicals, I saw a relationship between what I put into my body and how I feel. My reservation with tampons is that I don’t know exactly what I am putting in. My research has shown me, that I need to care about such things. It may seem silly to some, but pain free days are indeed, slices of heaven. They are not to be trivialized. One of the articles I read reinforced my resolve to watch what I put in.

I meet girls who love pads and others who love tampons, periods are personal, and every one has their experience. My advice to both is, do your research well and then choose what is most comfortable for you.

Love always,

Ess

 

The Pad Dispensers Are Here

When people talk about their period cycles, I thank God that I now have a cycle. Meaning, it is now somewhat predictable. Previously, it was more like a period doodle, yup, something out of a toddler’s workbook. I  was somewhere in between a 21 day and 37 day cycle doodle. So I seldom knew when my period was coming. I was caught unawares more than once, hah, Auntie Flo had a way of checking in when I’d just left the house. Perfect timing. Not. When Auntie Flo comes when you are not prepared, you become innovative, as you wait to find a pad. It’s most irritating when it’s easier to find a condom, than a pad in the ladies bathroom.

PAD DISPENSERS ARE HERE

You can imagine my sheer joy when I heard about Inteco Kenya and their pad dispensers. It was music to my ears.

Meet Ms. Munira Twahir, the beauty and brains behind Inteco Kenya.

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Her Story
I was 9 when I started periods and I was told not to touch boys. That was the end of my orientation into womanhood. The last 14 years has been on my own research and exploration which without guidance can be very risky territory to navigate.
Periods need to be demystified. It needs to be talked about so that girls do not feel as though it is a hindrance or a burden. The fact is womanhood should be celebrated. I have noticed there is a clash in wanting to speak about it and cultural norms. What can you or should you tell a 9 year old about sex and reproduction? Yet, they have started their periods and they are at risk of so many things because of this. I read a recent study that some girls have no association with having periods and pregnancy. This is an extreme case but, many girls transition into womanhood alone.
Inteco Kenya
Inteco Kenya aims to alleviate menstruation  related stress and anxiety by providing women a comfortable, accessible and flexible purchase of single sanitary pads. But, we are much more than that. We want to work with partners, individuals, corporations and institutions that share our passion, to celebrate women. Menstruation should not be a burden or a curse. It should not be a hindrance in the girl child education. It should not be a reason to go into seclusion every month.
We have a Sexual reproductive health programme. It’s aim is to give girls information about their body without judgement. Our curriculum covers reproduction, Menstruation, Sex, Risks, Contraception and boys. In each of these topics we have a technical teaching and the emotional side.
We usually have a conversation with the girls in the school to assess their level of knowledge and curiosity. Some schools we have been to are very conversant with menstruation health management but not with STD/STIs and vice versa. This is done as a casual conversation between the facilitator and the girls. The ratio of facilitator to girls is 1:40
Next we come back and get the numerical data of the conversations we had. This is for our statistics and research. It will form our base line.
We then use the two research methods to write a report on the particular school which we will share with the administration. This report will guide us on how to structure our classes and sessions.
The machine is part of the programme. We sell the pads at 10 shillings. The pads are not our own we are more than happy to partner with companies that are in line with our cause to supply their pads to our demographics. In a school, we only need the space in the lavatories.

You can get in touch with her here.

Blessings,

Ess

One In Ten Women

 

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Women are strong, resilient, gentle, powerful, and beautiful. They are powerhouses. Women deserve to be celebrated and appreciated. They don’t hear how great they are everyday, but they are the stars of our society.

One in ten women suffer from Endometriosis, yet we don’t talk about it. 176 million women are estimated to suffer from Endometriosis. If all of those women were to form a country, it would be the seventh largest country in the world.~@Endowarriors, #Endofacts

The most common symptoms of Endometriosis are:

  • Pain, especially excessive menstrual cramps which may be found in abdomen or lower back
  • Pain during intercourse
  • Abnormal or heavy menstrual flow
  • Infertility
  • fatigue
  • Painful urination during menstrual periods
  • Painful bowel movements during menstrual period
  • Other gastrointestinal problems such as diarrhea, constipation, bloating, and/or nausea

(information courtesy of reguardingwomen.)

Endometriosis is more than just a painful period. It is a pain that disrupts your entire life. Some women describe it as being stabbed from the inside. Pain is not normal. It needs to be discussed openly and early diagnosis needs to promoted.

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Let’s talk about Endometriosis, and encourage women to seek medical advice.

Happy  women’s day!

 

Blessings,

Ess

The Diary Of A Kenyan Endo Warrior: When It Rains, It Pours and Sometimes Overflows

Dear Diary,

My periods, while in high school, started off innocently, like the morning dew, I was relieved to finally be a woman. And then someone opened the tap and they poured and overflowed.

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The number of times that I soiled my clothes and sheets are too many to count. It was the usual, so I hated having to sleep out or stay out late on those days. I remember when we set out to climb Mount Kenya, I prayed to God to save me the agony of having my period on the Mountain. Back then I didn’t know about the pill to postpone my period. So I used another method, I avoided all the girls who were currently on their periods. I didn’t want anyone inspiring my periods to come while on the mountain. Poor girls, had to endure periods without showering. But, I think at that altitude your body is a little kinder to you. Well, I hope it is.

Once we got down from the Mountain, and into the hotel, my periods came. My pink trousers, that I loved, were now a hot mess, a bloody mess. The pain I felt was out of this world. I couldn’t stay to celebrate our victory, i just went to curl in bed. My uterus was punishing me for taking it to high altitude. It was a long night. The flow seeped through my protective sheet, and I was stressed.just-dying

Somebody needs to make pads for Endo warriors. A super long, super absorbent and super comfortable pad. I tried wearing two pads, before, but yo! that was extremely uncomfortable, I got a skin irritation from the pad materials, so I was left torn between heavy flow and irritation. They make for a horrible combination.

I tried adding cotton but that too was uncomfortable. Tampons are a story for another day.

Why are there only 8 pads in one packet? How many is one supposed to use in a day so that they are enough for the cycle? For me to be comfortable each month, I need between  two and three packets. Now, I’m able to buy as many as I’d like, but back then, being a teenager whose flow was out of this world, that was difficult.

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Why don’t suppliers keep their supply regular? It is soo frustrating when you finally find a pad that works for you and then it’s out of stock, or better still, a bootleg version floods the market and now you have to choose another brand and pray your way through your periods. Because your poor bum is so sore.

I’d love to see a pad company, tailor make a pad for girls with Endo. A brand that understands that when it rains, it pours and definitely overflows. One that understands that clots are real and we’d like a cotton top sheet, one that doesn’t irritate our bums. All for the same price, because Endo is already costly enough.

.

Love always,

Ess

 

The Diary Of A Kenyan Endo Warrior: Period Shaming

 

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Dear Diary,

My heart is heavy. Thinking about my periods as a teenager has brought tears to my eyes. When my periods became painful I heard all manner of comments from other women about how I should suck it up and put my brave face on. “No one needs to know you are on your period. Every woman has a period, you are not the first to have one and you surely won’t be the last”. These are words I heard so many times, and each time they pierced my heart.

I learned to put my brave face on and suck it up. Sometimes the pain was so severe that I couldn’t sit in class. The school nurse was not of much help. She quickly drew an image of the female reproductive system, explained that periods were normal and so was the pain, as she gave me two paracetamols.

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I remember those pills were so hard to swallow, I always said a prayer as I swallowed them. Sometimes she wouldn’t let me rest, because I’d become a ‘repeat offender’, a regular in her office every month. Yet, I never prayed for a painful period. After all, who likes to be sick anyway? I dislike being sick. I felt guilty for being sick, ashamed to be a woman. Sad that I was ‘that’ girl, the one with the problematic period.

Every woman gets periods but not every woman has Endometriosis. Just because your period is painless, doesn’t negate another woman’s painful experience.

Over the years, I grew tired of pretending to be okay when my uterus was collaborating with other organs to kill me slowly. I wore a brave face, while all along, I was dying slowly.

The thing that I wish all women knew is:  Just because your period is painless, doesn’t negate another woman’s painful experience. We need to stop period shaming, and talk about periods openly.

Painful. Periods. Are. Not. Normal!

Love always,

Ess

The Diary Of A Kenyan Endo Warrior: It’s A Bloody Affair

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Dear Diary,

As a little girl, I wanted to be a doctor when I grew up. This dream quickly fizzled away where I was in high school because my periods happened, and little did I know, Endometriosis was looming.

Back in primary school, I looked forward to my menarche because it meant I was becoming a woman. Home science lessons on puberty were interesting and I even had a pad bag packed, just to be prepared for the big day.

When my period eventually came, I was taken aback. Here was the blood I had been waiting for, but it was a very different experienced from what I expected. On the first day, I excitedly told my mum it had come and she in turn broke the news to my dad. He barely looked up from his newspaper as she spoke, his reaction was a shrug as he mumbled something in the lines of ‘ahhh, okay’.

As much as I paid attention in class, that valuable information did not prepare me for the reality on the ground. Nope. Not at all. I didn’t know how it should feel, smell, or look. And so I thought that the pain was normal, I was convinced it was normal and I embraced the painful normal.

My periods robbed me of a part of my life. I missed out on school; on fun; on life.

It was a bloody affair. My periods were horrible, the sight of blood grossed me out, the smell repulsed me. Some days I thought I was dying because the flow was so heavy. One pad was not enough to hold the flow, so I learned how to wear more than one pad and use other reinforcements.  The clots, oh the clots, they freaked me out. Nobody told me that chunks of body tissue mixed with blood would come out of me. The first time I saw them I was so scared; after seeing them for a couple of months, I realized that they were my normal, my painful, unsightly normal. Soiling my sheets was a regular occurrence, I didn’t understand how one could sleep and wake up without having an accident. And I hated every part of it. Every. Single. Part. Of. It. Especially the pain and the blood. Because the blood came with sweat and tears. My periods left me drained, upset and bitter. I hated this bloody affair.

Love always,

Ess

 

The Diary Of A Kenyan Endo Warrior

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Dear Diary,

Endometriosis Awareness month is here.

After 8 years, I am finally ready to share my story in detail. I’m excited but I also feel burdened because there are so many girls and women suffering in silence. 8 years ago, I was that girl, sad, confused, angry at my body, life and God; and in pain. I was in a dark place, tears had become my food. A cocktail of painkillers were my lifesavers. Shark week was more like shark month, I had more days of pain than those without pain. I hated every part of it. I was tired, boy was I tired. I slept tired, woke up tired, spent the whole day tired. I didn’t have to do anything to be tired, I was just tired; tired of being in pain, tired of taking painkillers, tired of not fitting into my clothes, tired of missing out on life, tired of having my periods; tired of being tired.

Deep down, I hope that sharing my thoughts here, will help some of them know that they are not alone and that there is hope. And it’s okay to be tired. Sometimes it takes hitting rock bottom to realize that the only way to go is up.

Here’s to sharing my story and uncovering the memories of loneliness, pain, despair, confusion, fear, healing, joy and peace.

Love always,

Ess

 

Calling All Endo Warriors in +254

March is Endometriosis Awareness Month. This March, we have an opportunity to wear a touch of yellow daily and share something with our circles about Endometriosis. The information we share could change a girls life and save her from living in shame and silence.

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Let us make this invisible disease, visible and audible. Talk, post and tweet about Endometriosis. Dispel the myths about Endo and help other women know that the pain is not all in their heads and they are not alone.

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The Endometriosis Foundation of Kenya is hosting a high tea for Endo warriors in Kenya. This is a good opportunity to come meet other Endo warriors, and hear exactly what the EFK is, what they plan to do and how you can plug in.

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As always, if you would like to share your Endo story to encourage other women living with Endometriosis in Kenya, please send me an email via yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

#TheKenyanEndoStory: Elsie Wandera

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The second Kenyan Endo warrior sharing her story with us is Elsie Wandera. Hers is a story of pain, hope and sisterhood. After struggling to get a diagnosis, she vowed to help other women know that they do not have to suffer in silence, and they do not have to walk alone. She is the founder of the Endometriosis Foundation of Kenya.

 

My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.

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The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.

 

Where it all begun

I started my periods when I was in primary school. I sincerely thought I was dying and I remember I was in the shower crying because I could see this brownish flow that I could not tell where it was coming from. My mom then told me it was okay and I remember I had to buy pads and that was exciting as a girl. I even remember how they smelt then 🙂

 

Managing the pain

The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the days. I also know that these were formational years for me because I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.

 

Diagnosis and treatment

I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure and the only way to simplify it for me the Obs/Gyn told me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding and it was by God’s grace that he found it because it was one of the things that contributed to the pain.

 

Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose the effects of endometriosis which include, chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to infertility among women. However, this is not a solution but a Band-Aid for 9-months that does not guarantee that the condition will not relapse.

 

At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.file

 

Endometriosis has affected many aspects of my life 

The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by any woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation and I know sometimes I called it “the egg-is-moving day.” I was also dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.

 

Emotionally it was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.

 

Socially I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow…God forbid I’d stain a seat when the flow opened after a bubble escaped…messy days.

 

Professionally, I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.

 

I have made changes in my lifestyle

The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.

 

My current challenges

I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods I try to compensate with a healthy choice.

 

Learnings from the journey and words of wisdom to other women suffering

I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.

 

We also need support from the world and by telling my story I’ve encouraged another woman know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.

 

Endo changed  my life

I believe out of the pain this journey my life changed and I chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about.

 

Also leading the movement reminds me that I’ve got followers who desire to be resorted as I was and therefore it is ensuring that they have a reference point and encouragement as they journey.

 

Finally, to the world:

Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.

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I love carnations 🙂

You can connect with Elsie on Facebook and join The Endometriosis Foundation of Kenya  Facebook group.

Follow her on Instagram and Twitter.

Thank you Elsie for sharing your story with us. You are a star!! ❤

If you would like to be featured in #TheKenyanEndoStory, please send an email to yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

It’s Time to Declutter Your Beauty Products, Cleaning Agents and Medicine Cabinet

Happy new year 🙂

About two years ago, I formed a tradition. At the beginning of the year, I declutter my hair and beauty products, cleaning agents and medicine cabinet. It’s a tedious but rewarding exercise. The first time I did it, I was shocked by how much junk I had in the name of products. I was just a hoarder, and I was holding on to expired products.I was horrified when I realized I’d been using some expired products without knowing.

I was poisoning myself slowly.

In the process of decluttering, I read the ingredients lists and saw just how many chemicals I was bombarding my endocrine system with. It was too much. So I resolved to use less chemical laden products where possible.

I replaced most of my sweet smelling lotions with natural oils, my hair products with natural ingredient products, commercial cleaning agents with home combinations (vinegar and bicarbonate can do wonders.) My house keeper was surprised to see how many uses vinegar has. I’ll share some of the ways I use it in my next post.

It has been a journey trying to eradicate most of the chemicals, especially since I like sweet smelling products. But it has been rewarding. I have found alternatives that are kinder to my body and I feel much better. The pain and inflammation has largely reduced.

This is the rule I hope to live by: If I can’t pronounce the ingredients, I probably shouldn’t be consuming the product in question.

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Take time out and go through the products in your home. Throw out what needs to go, and start using products that are kinder to your body.  If it doesn’t have an expiry date and it is not a completely natural product, throw it out. Very few commercial products are meant to last forever.

It may seem like you have gone at a loss, but in reality, you have gained in terms of your health. Health is wealth. Your body can now get a breather from the toxin overload.

Here’s to a healthy 2017!

Blessings,

Ess

Celebration Time C’mon!!!

The festive season is here, and it’s time to celebrate the birth of Christ and the year that has been.

As we wind up 2016, take stock of your year. Write down the things that you are grateful for; what made you happy ; what made you sad; what you are leaving behind and what you are carrying forward into the new year.

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Celebrate yourself!

You’ve made it through a whole year despite the challenges and curve balls that life has thrown your way.

Write a letter to your 2016 old self, tell her how wonderful she is, remind her that she is able to achieve all of her goals. Encourage her to keep dreaming, and living out her dreams.

Happy holidays,

Ess

Endo Pain Management Tips

Endometriosis is unique. Two women can suffer from Endometriosis but exhibit different symptoms and experience different levels of pain. What is universal though is, Endo sucks. I’m yet to meet a woman who thinks having Endometriosis is plain exciting and exhilarating. If anything, it takes out the light from aspects of life. Pain has a way of dulling experiences.

Different things work for different people. You may have to try different things before you find what works, but when you do, hang on to it with all you’ve got.

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For me, ingesting Apple Cider Vinegar was a life saver. Literally. The pain levels went from unbearable ‘I’m.dying’ to a cramp here and there. Praise be to God (do I hear an Amen?)

Here are a few Endo pain management tips courtesy of Patty’s Beauty World that you can try out.

*A hot bath with 2 cups of Epsom salts mixed in, they also sell lavender Epsom salts.

* A heating pad.

*Gluten free probiotics daily and keep them in fridge, no dairy, red meat, soy, gluten and flaxseed.

*A book by Julie daniluk is good lots of recipes , book is called meals that heal inflammation.

*A tens machine can help pain, buy it at some pharmacies or on amazon, got mine for $35 on amazon.

*Castor oil soaked in a small all cotton towel, then squeeze out excess oil and place on your tummy. Then place a plastic bag on top of towel, then place a heating pad. Leave on for one hour lying down relaxing. Repeat 3x week and everyday on your period, it will help with pain, indigestion, bloating. The more you do it the better it works over time.

*Light exercise like yoga or pilates. Light stretching, yoga and pilates.

*Also I drink almond milk 35 calories instead . Peppermint tea, lavender tea, chamomile tea helps, dandelion or dandelion root tea and chai tea.

*Visanne is an endo drug that has helped a lot of women.

*Acupuncture can also help alleviate pain too.

*Ginger capsules 250mg 4x a day, Helps with cramps and nausea and it’s all natural. Also turmeric capsules daily helps with inflammation and pain. To add taste to your tea use manuka honey if available.

*Melatonin 20mg at bed will help you sleep and it is all natural. The body produces melatonin but some do not produce enough, so these pills really work great and they are all natural.

*Lavender essential oil is good to calm you and help with pain. Rub a few drops on your tummy to ease pain, and if you have a headache rub a couple of drops on your forehead. Also a drop of essential oil lavender on each temple. You can even smell it a little to calm you down.

Have you tried something that has worked for you and you’d like to share with other ladies? Please send me an email yellowendoflower@gmail.com and I’ll post it.

All the best. I pray that you find something that works and healing all around.

Blessings upon blessings,

Ess

6 Tips To Prepare For Surgery

The words, ‘we need to operate’ shook me in my boots. The next couple of days were a blur. I didn’t know what to expect so I didn’t really prepare myself psychologically or physically for that matter. I was told that it would be a day procedure, so I took a matatu to the hospital at 9am, and I planned to take a matatu back home. Only to wake up and find that the anesthesia would take hours to wear off, and during that time, my mouth would speak more words than usual and I would be floating and dreamy. Thank God for angels, who came just in time to save me from staggering err floating to the matatu stage.

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When you hear the words, “We need to operate”, here are a few things you can do to prepare for the big day:

  1. Seek a second opinion

If you have any doubt about a suggested procedure, please seek a second opinion. Remember the factors to consider when seeking a second opinion.

       2. Get more information

Read widely about the procedure and anesthesia options. Talk to other people who have undergone the surgery online and offline about the procedure and it’s effects on your body.

Discuss with your doctor any history of allergies or side effects to drugs. Don’t leave anything out, a small detail could save your life.

Find out what you need to do to prepare for the surgery, foods you should increase, supplements you should or shouldn’t take. Confirm if you they will need you to have bare nails.

         3. Evaluate the options

If time allows, visit the hospital options then make an informed decision. Postoperative care is important as the doctor is not able to be with you during your whole stay.

Look at the other services offered by the hospital and see how prepared they are in case of an emergency.

         4. Pray and keep hope alive

Pray! Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus. (Philippians 4:6-7 NLT)

Make a thanksgiving jar, and write the things that you are thankful for, both the big and the small. Allow your mind to focus on the good aspects of life.

         5. Prepare ahead

Inform your next of kin that you will be going to hospital and having an operation done.

Arrange for someone to drop you off and help you with the admission process. On the day of discharge, have someone help you with the process so that you can rest as you prepare to go back home.

Back at home, organize meals in advance that need minimal preparation. Plan to be off your feet for the next couple of days. Get someone to help you with the housework as you get your strength back.

         6. Find a support group

There are many other women who are walking the same path that you are. Their first hand experience means that they understand the journey better. Find a group and keep in contact, let them remind you that you are not alone and it gets better. Some of the closest bonds are formed in times of pain.

All the best! I pray you have a successful surgery and a swift healing process.

Blessings,

Ess

 

Endometriosis Is Real and Resilient-32 Surgeries Later

Time and time again, I meet a woman who has been strongly advised to have her uterus removed because it’s removal will cure Endometriosis.

This myth needs to be dispelled from the mountain tops.

“A hysterectomy is not a cure for Endometriosis.”

Meet Patricia Roy, a woman with strength beyond words. A woman whose had 32 surgeries because of Endometriosis. From her we learn that Endo is real. Endo is resilient; but we are more than Endo.

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Hi! My name is Patricia and I am 41 years old. My period started at the age of 14, and I couldn’t wait to start my period. It meant I was a woman in my eyes. I started having period issues at 15 years old. My mom took me to my sisters gyno because my sister had endometriosis and I was showing symptoms. After I saw the gyno he did surgery and I was diagnosed with endometriosis at 16.

When I was first diagnosed i didn’t worry about it, because it wasn’t severe. But I was put in birth control to help with my periods, then the pain started increasing and was put on Depo provera injections. Those didn’t work so I was put on Lupron and that also did not help. I had many surgeries to clean out the endometriosis and at 21 it was decided a full hysterectomy would be best for stage 4 endo. I thought it would be a cure, but it was not a cure.

I do regret the hysterectomy. Because it’s not a cure. And I always wanted a baby if my own. It was a very dark time in my life when I had my hysterectomy, my writing helped me cope.

 

This disease changed my life in many ways. I was unable to finish college because I was too sick. I worked off and on but eventually I had to be put on disability. Emotionally my journey with this illness has caused me a lot of anxiety and panic attacks.

I have had 32 surgeries so far and I currently have endo on my bladder and cysts all over my pelvis. I started a support group on facebook called Sisters in Yellow.

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I currently started writing for a magazine called  Streetfashion I am the beauty editor. Although at the moment it doesn’t pay, so I look at it as a learning experience. I always wanted to be a writer since I was little. I write poetry and song lyrics. My writing has gotten me through a lot of dark times, dealing with this disease.

My advice to other women is to take it one day at a time, and to find a hobby that takes your mind off the pain. I’ve also come across a lot of pain methods that are natural and can be done in the comfort of your home. I have a beauty page where I share home pain methods.

My favorite flowers are Daisy or Calalily. My favorite color is light purple.

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The beautiful thing about Patricia is that she has not let Endo dull her sparkle. 32 surgeries later, she still has a smile on her face and light to shine to the rest of the world.

Be encouraged, you are not alone. Shine where you are.

Blessings,

Ess

Why I Keep A Period Diary

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Ever since I was a little girl , I always kept a diary. It was my outlet and a way of keeping a record of the little details of my life.  Unfortunately, I was not very detailed about my periods and their patterns, so when I needed this information, it was nowhere to be found. I answered the doctor with a lot of ‘Umm, I can’t quite remember’ and blank looks with several breaks in between as I tried to run up and down the corridors of my memory trying to remember key details. I am sure that there are many ‘little’ important details that I left out during these consultations.

After many years of trying (and failing) to recall from memory I finally discovered the Period Diary app and it literally changed my life. I was finally able to document my period journey daily, and a couple of months later I begun to recognize patterns in my cycle.

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I quickly realized that my menstrual cycle is not just about the day(s) that I shed the lining  of my uterus. It is about what I experience through the whole cycle, my emotions, diet , ovulation. It is the vaginal discharge all through, the color and texture of the actual shedding. Keeping a period diary has helped me to be more in control of my body, as I know what it’s triggers are and what to anticipate at different times. I am definitely more prepared for the occasional pain, PMS symptoms and actual periods.

Keeping a diary has helped me to see the cause and effect of different things that I’ve tried. For instance, when I detoxed and started taking an Apple Cider Vinegar elixir every morning the inflammation and pain during my cycle significantly reduced. I also figured out that the monthly headaches were reducing over the months, so I was definitely doing something right.

I recommend keeping a period diary to all women, both young and old, whether you have complications or not. It helps you to understand your body, it’s functions and your emotions.

Mothers with teenage daughters, I urge you to ask your girls to keep a period diary as soon as they start their periods. After every couple of months, sit down and review it with them. Talk about the patterns that you both recognize. Many girls don’t know what a normal period is. They often just take their periods as they are,  persevere, until they are adults and realize that something was wrong all along.

There are several period diary apps that you can choose from on the Play store. This is the one that has worked best for me.

If you opt to keep a physical diary, these are some of the details to record:

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Blessings,

Ess

Seeking A Second Opinion

Never be afraid to ask questions about  your body and the things that you have been told it has or doesn’t have or can and can’t do.

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After a long time of searching for someone to believe your symptoms and give you a diagnosis, it is possible to feel an allegiance to the doctor who finally puts a name to the pain or discomfort. Sometimes it is important to get a second opinion, to confirm that the diagnosis and suggested methods of treatment are the most appropriate for your case.

You need to notify your current doctor so that they can avail copies of your imaging studies, medical records, lab and test results for review. Some doctors may be uneasy about you getting a second opinion, in such cases, stick to your gut feeling and go in with an open mind.

Look for a doctor:

a) who doesn’t have a personal or professional relationship with your current doctor. This will help your healthcare to remain the primary objective.

b) who has the training and experience to offer fresh insight into your condition. Do not move from a Gynecologist to a General Practitioner when dealing with Endometriosis.

It is important to note that different doctors’ school of thought, training, exposure and methods may cause them to differ in opinion. The diagnosis may even change. If the opinions of these doctors differ to a large extent then it may be wise to seek a third opinion to make a decision, and hope that the diagnosis and treatment methods lean more to one of the two.

All in all, my prayer is that you find a specialist who will walk with you and give you the care that you need.

Blessings,

Ess

 

Preparing To Visit To The Gynecologist

Visiting a gynecologist for the first time can be confusing and exhausting. I was ill-prepared for my first visit, I barely knew what to expect which made my experience harder than it needed to be.

Over the years, I have come up with a preparation strategy that has yielded great results. I find my visits to the gynecologist now more comprehensive, and the waiting room does not discourage me.

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Here are some tips to help you prepare for your visits to the gynecologist.

1. Call in advance

Doctors are busy people. It is wise to call in advance and make sure that the doctor will be in on the day that you want to go. If the Doctor is very busy and constantly in theatre, call on the day to confirm that he will be in.

If the doctor sees patients by appointment only, be sure to make an appointment in advance.

If the doctor sees patients on a first come, first served basis, find out what time he comes in and leaves, then plan to be there in good time.

Confirm payment terms in advance; if you are using insurance, find out if they accept your insurance cover and if you have to co-pay. If you are paying cash, confirm the amount for first visit and subsequent visits. Clarify the terms of payment accepted, if they accept credit card or M-Pesa or cash.

 2. Write down the key points of your story 

For the doctor to treat you well, it is best if s/he hears the whole story, from the beginning. Write down the key points of your story so that you can refer to them, when asked ‘How can I help you today?’.

Points you can consider:

When did you start your periods? How were they? Your current cycle pattern? If you’ve had a diagnosis made, note down dates. Current symptoms you are experiencing and when they begun. Any family history that s/he should be aware of? Which medicines have you tried and what was your experience? Any drug allergies

3. Carry supporting documents

If you’ve had diagnostic tests done, carry the results so that the doctor can have a look at them . If you are currently taking any medication, carry it for the doctor to see.

4. Write down questions and concerns you may have

Did you read something on google that sparked a number of questions? Note them down. As you ask the questions, remember that google is not a Doctor.

5. Have a meal and carry a form of entertainment

Waiting rooms can be boring and morbid. Sometimes you meet happy-go-lucky people, and sometimes you meet people who’d rather sit in silence. To avoid prolonged small talk that may or may not be appreciated, carry a form of entertainment to keep your mind off of the time you spend waiting.

Waiting can make you hungry, if you can, have a meal before you enter the waiting room.

All the best. As you go, pray that God who knit you in your mother’s womb will give the doctor divine wisdom to treat you.

Blessings,

Ess

10 Factors To Consider When Choosing A Gynaecologist

My first visit to the gynecologist was not what I expected; I was confused, afraid and uncomfortable. After many hours in the waiting room, I finally walked in and saw him. The doctor was a middle aged man who was not too chatty or ‘warm’ but he got the job done. I was young and naive; I was scared because the pain in my abdomen was getting worse as the days went by. I was all alone and looking for consolation but the doctor’s personality was not very warm. In retrospect, I would have chosen differently.

I didn’t really have a criteria when choosing the doctor. After various campus clinic with recurrent pain, the campus doctor just told me to go see one of the doctors on the insurance list. I used the nursery rhyme ‘inky pinky ponky’ to help me choose one. There was nothing objective about this choice; though the campus doctor backed my decision.

Over the years, as I’ve turned different chapters in my health story I’ve had to choose other gynecologists. A couple of doctors later, I finally have a list of factors that I consider before I settle on a gynecologist.

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1. Your need

It is important to know why you are looking for a gynecologist. Is it for a routine visit-pap smear, mammogram, vaccine? Are you looking for an obstetrician to walk with you through your pregnancy? Are you having complications with your period-pain, irregular menses, other condition such as PID, Endometriosis, PCOS? Are you having a difficult time conceiving?

2. The doctors speciality

Gynecologists are not exactly a one size fits all.

Some conditions are better treated by a specialist. Based on your need, consider what the doctor specializes in, then narrow down the list. If your struggling to conceive, a fertility specialist would be a better fit compared to an Obs/Gyn.

3. Payment services

If you are using an insurance cover, find out if the doctor take your insurance cover and what the limit is. It is also important to inquire what the consultation fee is, just incase you need to pay the consultant out of pocket.

4. Availability

Does the doctor have very long lines? Are they only available on certain days? Are they available on phone in case of an emergency? If your current schedule is not flexible then a busy doctor will be difficult to keep up with.

5. Hospitals They Can Operate At

Incase you need to be admitted and have a surgery, find out if the doctor can perform the surgery at your preferred hospitals.

6. Testimonials

Ask around and objectively analyze other people’s experiences with the doctor. Remember that everyone’s experience is personal and two people may differ in opinion.

Personal Preferences

7. Gender

Do you feel more comfortable with a male or female doctor? Your doctor should make you feel comfortable and not like your privacy is being infringed upon.

8. Age

Do you prefer a young doctor or an older one with more motherly or fatherly tendencies? Consider which age group makes you feel more at ease.

9. Faith/Religion

If you feel a doctor who shares your faith beliefs will be able to walk with you better, look for one.

10. Your Instinct

Visit the doctor and trust your instinct, listen to your inner voice. Make sure you settle for a doctor who inspires confidence, and lets you know that you’ve been heard and are in safe hands.

All the best in your search.

Blessings,

Ess

The Conversation Needs To Go On

Gone are the days when parents could wait for the eve of their child’s 12th birthday to broach the subject of adolescents and sex. Children are maturing much earlier now, also, they are exposed to a lot of informative content from a tender age. Their attitudes and thought patterns are formed long before they hit teenage.

The truth is that we live in a highly sexualized world.

Just because you are not talking about it doesn’t mean that your child is not listening.

The world is filled with opinions and children are wired to learn, from whoever is teaching.

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You can’t wake up the eve of your child’s 12th birthday and decide to be an authority on a matter they have heard about over the years from everyone except you. Unlearning is harder than being taught.

The seemingly uncomfortable subjects need to be discussed . Children can sense discomfort and shame. We as parents have to be careful not to pass on baggage to our children. If a certain topic makes you uncomfortable, perhaps you need to look within and see what exactly makes about it makes you feel uncomfortable and deal with it.

A truth zone

In my first post, I wrote about how I was told pads were called ‘mkate’ (bread). Honestly, it was such an unnecessary lie, but it stuck in my memory.

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It made me decide that my home will be a truth zone. There are enough lies being told out there, for me to come and add on to. My children need to know that I can be trusted to tell them the truth.

Can your child trust you to be honest with them?

When I say honest, I don’t mean spill all the beans, but tell them enough to satisfy their curiosity. Tell them the age appropriate truth.

Listen when they speak

It is important to listen to your children when they speak. Ask questions about both the small and grande things about their lives and listen. Turn down the noise, put away the gadgets and listen. Find out what makes them happy, their current interests and opinions. It’s easier to identify behaviour out of the norm when you know what the norm is.

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The conversation needs to go on. It starts now. Honesty starts now. Cultivating a relationship with your child that allows you to teach them the truth and life skills starts now.

We can sit back and blame the rotten society for our children’s beliefs or we can stand up and speak the truth.

You are an authority. Take your position and speak boldly.

Blessings,

Ess

 

When Sex Hurts #TheKenyanEndoStory

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Sex is supposed to be synonymous with pleasure. Sometimes, it is not, and pain takes the place of pleasure. Over time, it is possible for this to strain a marriage. One of the symptoms of Endometriosis is pain during or after sex.

Pain during sex is seldom talked about and many women and marriages are suffering in silence. In honor of Endometriosis Awareness Month earlier this year, I asked Maggie Gitu, a Marriage and Family Therapist and Sex therapist to expound on what to do when sex hurts because of endometriosis or adenomyosis.

courtesy ofhttp://signaturextra.com/5-medical-conditions-ways-to-deal-with-painful-sx

Sex is one of the most important and fun ways for married couples to connect. Painful sex, however, is no one’s idea of a good time. Painful sexual intercouse, also known as dyspareunia, is the persistent pain that occurs during or after sexual intercourse. Dyspareunia can occur as a result of a variety of issues such as insufficient lubrication, trauma, surgery or physical conditions such as vaginismus, endometriosis or adenomyosis. Endometriosis is caused when tissue that lines the uterus grows outside of the uterus, while adenomyosis happens when uterine tissue grown into the uterine wall. Both of these conditions can interfere with sexual intercourse.

While the presence of endometriosis or adenomyosis can interfere with a couple’s sexual pleasure, there is no need for sexual intimacy to cease altogether. So what’s a couple to do?

Communicate:

It may sound cliché but it’s absolutely true. It’s important for a couple to communicate openly and honestly about what is happening in their marital bed. Even going for doctor visits together would be helpful in allowing male partners to hear the information directly from a qualified medical professional, which may increase their understanding and empathy for their female partners.

It is also important to allow room in the marriage for honesty: room to speak honestly about the challenges of having to deal with a condition, irritation at having to avoid certain sexual positions that you would want to try but can’t because of the pain to the partner, the guilt or shame that is common with partners who feel like they are being denied the sexual adventures they imagined they would have. Remember that these feelings are about the situation, not the person. The bottom line is that openness and honesty will be crucial if a couple is to enjoy their sex life.

Lose It:

Lose the guilt, because none of this is your fault, and even when/where you could have done better, now you can because now you know better. Lose the blame; again, this serves no purpose in enhancing the intimacy in your marriage. Accept that this is the situation that you’re in, find a competent doctor to work with you and move forward determined to enjoy your sex life together, inspite of a diagnosis of endometriosis/adenomyosis. Lose the bad attitude; it’s going to destroy your sex life, which will in turn negatively impact other aspects of your marriage. Lose anything and everything that will interfere with your ability to connect as a couple. If you need more support, more information, or additional medical intervention, all you ever have to do is ask, so ask! Your doctor will advise you on all the options that are available. Lose the pressure to be perfect; sex is about connection, intimacy and fun not an Olympic performance with a score board. Relax into it; remember that you are not alone, and there is help and support to be found for those who take the time to seek. 

Attitude:

When it comes to sex, attitude is everything. Even without the added challenges of endometriosis or adenomyosis, the attitude a couple has about the kind of sex they want to have really does make all the difference. Instead of seeing these conditions in a strictly negative light, try to challenge yourselves on all the positive things that can come out of this, for example, the sexual positions that you hadn’t even thought to try might be exactly what you need in order to have sex life that you want.

Experiment and Have Fun:

Sex should be fun, so make it fun and experiment. As a couple, be open to different sexual positions, for example, while the missionary position may be painful for some women, it may be easier for you but you’ll never know unless you try. In addition, begin to figure out what sequences work best and which ones are best left alone e.g. some women find it easier to begin with one sexual position and then move on to other positions while some find that maintaining a single position is easiest on them. The point is, experiment! Make a game of it by coming up with a funny ranking system that you can both look forward to contributing to; be sure to add an exciting reward system 😉

Part of experimentation is understanding that sexual intercourse is not the only way to enjoy sexual intimacy. In other words, what are your sexual limits? What are you willing to try, even once? Developing your own sexual ‘playlist’ as you seek to increase your repertoire can be a fun way to take the pressure off by focusing on what feels good, not what ‘should’ feel good. With the right attitude, the issue may no longer be what the couple can’t do but instead be all the things they haven’t – yet. The sexual repertoire is endless so experiment and find out what works best for you.

A happy healthy sex life is vital for any couple and despite having a diagnosis of endometriosis/adenomyosis, it is achievable with communication, the right attitude and a sense of fun.

If you would like get in touch with Maggie, you can reach her via maggiegitu@hotmail.com, +254 734 757 785 or @MaggietheMezzo .

I initially shared this post on my other blog Bibi2be.com

Pain during sex affects a woman and her relationship. My heart has had a burden for women who are going through a hard time in this area. This August, I will be hosting an event to support women who have struggled with pain during sex and the emotional turmoil that it comes with.

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If you are a woman living with Endometriosis in Kenya who would be interested in talking about pain during sex more candidly with a small group of women facing the same challenge and a counselor, please send me an email via yellowendoflower@gmail.com and I’ll send you more details. Due to the nature of the conversation, the sessions will be very small.

Blessings,

Ess

#TheKenyanEndoStory : Nurah Palesa

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The first Kenyan Endo warrior sharing her story with us is Nurah Palesa. Hers is a story of pain, despair, strength, courage and hope.

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

 

The pain begun immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides were attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene.

At the end of the day my mom gave me Syndol. Yep Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different.

I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

Oh wait, did I forgot to mention that I would get high off the pain meds… lol aaaand that I was a heavy alcohol drinker. For 7 good years.

The combination of alcohol and a cocktail of pain meds made the pain bearable.

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

I would literally get high just to escape the pain.

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

I found out that foods (which I had always known, I’m very strict with what I eat.) contributed to the pain levels and there was a diet I could start.

Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried… My body just didn’t accept it.. And recently I discovered that diets don’t work for everyone,  our blood types play a big role in the foods we need and as an O+ I need meat.. (Sticking to white)
So again I run around for another year looking for a solution and I found one. Or so I thought.

I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. (I had stage 4 of Endo at this point)

 

Relief at last

 

For the first time in 13 years I had no pain.

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas… Been on a general healthy diet from the word go.. My moms always been conscious about food.

 

Endo and Family

 

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods.
The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

I would love a whole football team of children lol.. 

Endo is genetic, my mom and I traced it back to her grandmother(Her dads mom)  so for me it doesn’t really matter if I have a daughter or son,  I’m going to have to tell them asap about endo.. And what they can do from the word go.

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Parting Shot

 

To my queens and princesses I agree it is soo not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen/princess.

Seriously, we women can be brutal to each other and it’s about time we stopped.

The black rose is my favourite flower.

You can check out Nurah’s blog here.

Follow her on Twitter and Instagram.

Thank you Nurah for sharing your story with us. You are a star!! ❤

If you would like to be featured in #TheKenyanEndoStory, please send an email to yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

 

#TheKenyanEndoStory

When I was diagnosed with Endometriosis, I only knew one other woman with Endo and she was not willing to talk about her journey because of the stigma she had received. I was alone; I felt like an anomaly. My journey with Endo was very lonely and depressing. There are many times that I was almost consumed by these feelings. Suicide crossed my mind a couple of times. By God’s grace, I made it through.

As I researched about Endometriosis a few years back, I realized that there were many stories from the UK and USA but very few, if any, from Kenya. A few years later, I found other women in Kenya who were fighting Endometriosis; I was encouraged and wished I’d heard these stories of pain, strength and courage earlier.

 

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A couple of months ago, I had a dream to share stories of women suffering from Endometriosis in Kenya. I wanted the world at large and the people of Kenya to know that:

*If you know ten women, you know Endometriosis. It affects one in ten women.

*Endometriosis does not fit in a box, it is vast and multi-faceted. It attacks different organs, so every woman’s experience in unique.

*Endometriosis doesn’t have a trademark look. Many women are suffering yet they look normal. Behind their smiles are souls that carry pain unknown.

*Information is power. The more we talk about Endometriosis the more women we empower and together we decrease the stigma.

*We need policies that support women with Endometriosis in Kenya

*Specialized healthcare needs to be more affordable and accessible. Getting a diagnosis in Kenya is like buying a parcel of land.

Several months later,

Ladies and gentlemen, I present to you a new segment on this blog #TheKenyanEndoStory. yellowendoflower.wordpress.com.

It will feature stories of pain, hope, courage and strength to encourage women in Kenya and around the world. The first story goes live in a few minutes.
If you would like to be featured in ‘Her Endo Story’ #TheKenyanEndoStory, please send an me an email via yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

 

The Lonely Side Of Endometriosis

I’ve been unwell the last couple of days. The levels of pain reminded me of an Endo flare and the memories all came flooding back.

Yestermorning, I read the story of the woman who hemorrhaged for twelve years and had spent all her money on physicians in Luke 8. They couldn’t find a cure.

43 A woman in the crowd had suffered for twelve years with constant bleeding,[g] and she could find no cure. 44 Coming up behind Jesus, she touched the fringe of his robe. Immediately, the bleeding stopped.

45 “Who touched me?” Jesus asked.

Everyone denied it, and Peter said, “Master, this whole crowd is pressing up against you.”

46 But Jesus said, “Someone deliberately touched me, for I felt healing power go out from me.” 47 When the woman realized that she could not stay hidden, she began to tremble and fell to her knees in front of him. The whole crowd heard her explain why she had touched him and that she had been immediately healed.48 “Daughter,” he said to her, “your faith has made you well. Go in peace.”

This really reminded me of Endometriosis, and my heart just went out to all the women suffering from Endometriosis. The truth is that unless we too, figure out how to touch the hem of His garment all we are doing is simply trying to manage the condition. There is no known medical cure for Endometriosis. 

After being sick for such a long time, you realize who your true friends are. Your life comes to a stand still. The vibrant life you once led now becomes a distant memory. As much as you would like to, you are not physically able to do everything you’d like to do. And it hurts. It hurts to watch a part of your life fade away. It’s sad when getting out of bed was the biggest achievement of the day.

got outta bed

The shame. The questions. The roller coaster of emotions. The question “You are STILL sick?” becomes a constant. The labels are disheartening. The despair. The dismay. The disappointment. The discouragement. All these other things that come with Endometriosis make it a very lonely journey. Not many people are able to understand the turmoil and pain that you experience. Not many people understand the desperation to get well. Often we see people do seemingly crazy things in the hope of getting better. What I’ve learned is that unless you walked in the person’s shoes, you are better off shelving your judgement. You don’t know their pain. I know that I too have had crazy thoughts; I have been desperate for the pain to end. In those moments I was willing to do almost anything to take the pain away.

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Today I just want to encourage all women who feel like hope is lost, that you are not alone. As you lay in fetal position and cry your heart out, you are not alone. The Lord who knit you in your mother’s womb is right there. Do not stop pressing in, keep believing.

Sending you love and light,

‘Big Sis’

The Other Side of Endometriosis

Happy new month (:

For several years, I have spent time and money dealing with the symptoms of endometriosis. There have been countless doctor visits, lots of pills swallowed, scary surgeries. I mean, any surgery is scary, lots of anxiety, insomniac nights and worry.

However, when it comes to dealing with the root cause, I shy away. All of a sudden, I am too busy, or suddenly, some things seem to private; yet I have seen countless of doctors trying to decide what was wrong with my privates. The irony.

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A couple of weeks ago, I decided to go on an emotional journey, one of trying to figure out what triggered Endometriosis symptoms. This has been perhaps one of the hardest journeys I have ever been on. It makes the countless visits to the gynecologist , even the scary surgeries, seem like nothing.

Here I have had to get real with myself. Accept that I have been hurt, in fact, I am still hurting and what do you know, it is okay. It is not too late to receive healing. It is not too late to work through these emotions. Walking down this road of emotions can easily ruin my day, because I never quite know what I will find. I am so used to keeping up face that I almost forgot what I really look and feel like, without all the plastic ‘I am doing great’ smiles.

For years, I would gnash my teeth as I slept. If you ask anyone in my home of origin, they will tell you that Bruxism was synonymous to me. I was sometimes too embarrassed to go sleep out of the house because people would hear my not so musical tunes; worse still, they would judge me. Yet contrary to popular belief it was not something I had control over.

After I got married in 2012, it stopped after a couple of months. Oh thank God, it stopped. I finally felt safe. There were days I would wail myself to sleep, trying to sort out my emotions, but it looks like those tears cleansed me of anxiety. Now I don’t gnash my teeth anymore, I am sure my husband is so relieved.

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So maybe other Endo symptoms are a lot like Bruxism. You don’t have much control over them when you experience them. But, if you are willing to make a few changes in your lifestyle here and there, the severity might reduce.

Maybe we need to deal with Endometriosis from the inside out. Get healing from the inside out.

I was awaken, when I have joined EndoPositive™ International, and over there it was brought to my attention that endometriosis is a psychosomatic disease. I thought then, psycho what? I realized, we live in the world, where we will so much easier accept pills, surgeries over work on ourselves! Only when I realized, how serious it could get, if I continue to overlook my unconscious mind, I finally woke up! And I am glad I did!

Today, I continue working towards the self love, forgiveness and self awareness. Perhaps you could give it a try. You will be surprised how many things you will find out. If you feel, you are not ready, consider

I originally posted this article on EndoPositive™ International’s website in September ’15 under the title ‘What if you have been looking at Endometriosis all wrong’. My journey has been difficult, refreshing and healing all at the same time. I am still a work in progress, not where I was when I originally penned down this article. My health is at a better place.

 

Have you considered that there could be more to Endo than meets the eye? How has your journey been?

‘Big Sis’

 

I Wasn’t A Hypochondriac Afterall

I almost hugged the doctor the day he have me a diagnosis. I couldn’t pronounce ‘Endometriosis’, and I barely knew anything about it, but it was a diagnosis, and it somewhat explained the pain I’d been feeling. Also, in retrospect, I don’t think that the Doctor would have appreciated the hugs as much as I would have.

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After years of being labelled a hypochondriac and sickly child, it was so refreshing to hear someone finally give a name to the condition I’d been facing. Granted that no one likes to hear they are sick or get a diagnosis they can’t pronounce, but after years of crying in fetal position in pain, getting a diagnosis was music to my ears.

I felt validated , like someone understood me and my pain. I didn’t understand the intricate details, but I understood this:

a) someone believed me

b) the pain was not all in my head

c) we could try to manage it

I had been trying to tell the world for six years that periods this painful were not normal. I struggled with feelings of guilt and depression when getting out of bed seemed like a task too big for me.

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Invisible illness is sometimes very difficult to diagnose. It’s possible to get several misdiagnosis especially when the symptoms are similar to other illnesses.

When the doctor mentioned surgery, I was just like ‘bring it on!!!’. My fear of going under the knife was less than my fear of living in this pain. If this surgery could help, then I wanted it, I needed it stat. Prior to this, I had a surgery that I didn’t need and got an inconclusive diagnosis because the Endometriosis symptoms had manifested in my bladder.

I wasn’t a hypochondriac after all.

Have you been labelled a hypochondriac? Don’t give up on looking for a diagnosis.

‘Big Sis’

I Was Labelled A Hypochondriac

Hypochondria

“It’s all in your head!” is a phrase I heard one too many times. Looking back, I somewhat see where these people were coming from. I mean the symptoms I was experiencing were just all over the place-painful periods, severe bloating, chronic fatigue, irritable bowel syndrome, recurrent urinary tract infections, backaches, the list is quite long. I was constantly in pain. My period had turned into a monster. Rearing it’s head at every point of my cycle. It wasn’t really a cycle, the length kept changing every month. While most of my girlfriends bragged about being regular, I was as irregular as it got. Anywhere from 24-37 days. So much for being able to predict when I’d be rolling.

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I saw several doctors but they weren’t quite sure what was wrong with me. In fact I became a regular at the clinics, the doctors could almost predict what I was going to complain about. They’d heard it all. There is something about hospital waiting rooms that makes you feel sicker than you actually are.

The most deflating moment is when the doc would say “I can’t seem to find anything wrong with you.” One even went ahead to add, “I think you are imagining the pain. It’s all in your head.” In addition to the swollen belly and physical pain, I left his office, with medicine he wasn’t  sure I needed and dampened spirits. Most times I would just go home and cry. I was that girl crying in the lift, not because I had received a diagnosis, but because the professional was trying to make me believe that I had brought the pain upon myself. How I hoped I could just wish it away, or sleep and it would all be over.

 

all in your head

My journey taught me to trust my inner voice. To keep searching for an answer; a diagnosis. To never give up on myself, even though others dismissed me. Tough times show us who we really are, we find reserves of strength we knew nothing about.

Have you been labelled a hypochondriac? Have you given up looking for a diagnosis?

In part 2 I will talk about the day I got vindicated; when I finally received a diagnosis. It was the beginning of a difficult chapter, but it was far much better than not knowing what was wrong with me.

‘Big sis’

 

How I Became A Rookie Pharmacist

Up until a couple of years ago, I was a self-proclaimed, self-medicating, rookie pharmacist.

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Let me explain how it came about. A few months into my period, I started experiencing painful cramps. Every time I brought up the issue, I was told that the pain was normal. Though deep within me, I knew that pain that intense was everything but normal. In fact, I had monthly visit to the high school nurse, where I could predict the order of the day. She would quickly draw a picture of my uterus, explain that it was shedding its lining and hand me two Paracetamols as she sent me back to class.

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The emergency room was not very helpful initially, a painful period is not on the top of the ’emergency conditions’ list. I  remember ever so vividly rushing to hospital because of painful periods but being kept waiting for over two hours because it ‘wasn’t an emergency enough’. That is until my blood pressure would spike and the doctors would wonder how I was walking with all that pain.

To avoid the inconvenience of the hospital, I would self medicate when the pain would get intense. The method was simple: I would mix up all the remaining stock that I had. One Buscopan Plus, One Ponstan , One…. you get the drift. I was self prescribing a cocktail that left me in a happy place; read: pain free, albeit for a few hours. Then I would need a repeat dosage.

My poor body. What I didn’t know then was that this cocktail could have adverse effects on my health. I was young and foolish, I didn’t bother to read the pamphlets. I thought  I was being a good steward of my time, studying for exams instead of reading pamphlets in font 2 [ I understand that they are trying to fit a lot of information on a small piece of paper, BUT, how does that font size motivate the target audience to read it?]

Also, I foolishly believed that I wouldn’t have any allergic reactions, I always prayed that I fell in the percentage that did not display any reaction to the drug. The desire to be pain free overshadowed every form of good sense in me. I was desperate, I needed relief; ever so urgently.

 

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I am now reformed. I get a proper prescription from a certified professional and religiously read the medicine pamphlets; in fact, I get very irritated when I’m sold a few tablets in an envelope without a pamphlet. I could be slowly poisoning myself for all I know. I read on the internet and make an informed decision when I take medicine and know what to look out for in terms of allergic reactions.

Are you a rookie pharmacist? Do you take time to read medicine pamphlets? Have you experienced any allergic reactions to the cocktail of meds?

‘Big Sis’

 

I Call Her Red

My little toddler found a packet of pads a few days ago. I told her they are called ‘pads’; for some reason she thought they were diapers for her toys.

I had the option of telling her a coloured lie, BUT, I am trying to make our home a truth zone. Also, the fact that I believed pads were mkate/bread, is rather bewildering. When my husband read my first post he called me laughing, wondering how now brown cow I was told they were bread; better yet, how I believed it. Oh the folly of youth. I’m yet to understand it myself.

When I got my period, I wasn’t sure what to refer to it as. Was it a ‘he’ or a ‘she’ or just an ‘it’? I rejected the nickname that was introduced to me, ‘kunyesha’ which means to rain.

exclamation points - periods

Also, I’ve always wondered why some people call it period and other periods. Does the pluralism indicate severity? Just food for thought.

When I asked my peers, I learned there was a better nickname, ‘Rolling’, you know, like the stone that gathers no moss. And so it stuck, until this rolling felt like tumbling down under. The pain was something else.

I then decided that my period was a she with the prefix ‘Red’. At some point it was so painful, all I could think of calling her was ‘Red Devil’ because the pain was outta this world. Now she is just Red. Red signifies her color, the fact that she stands..er..seeps out and finally the fact, that my vagina is a no go zone while she is in town.

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Other nicknames I have come across are:

  • Shark week
  • Aunty Flo is in town
  • Red Robot
  • TOM {Time of the month} is here

What do you call your period? Does it live up to it’s name?

You can find other interesting nicknames here and here.

‘Big Sis’

My Period Is A Part Of My Life

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After weeks of waiting and wondering how the first monthly sighting would be, my period finally came. They were not what I expected. On one hand I expected to feel different, I felt different in a gross kind of way, not a,’I am now a woman’ kind of way. On the other hand, I knew this was IT. The beginning of the end of my innocence. Remember my introduction to periods conversation? I felt as though a part of me was dying. Seeing blood supported this line of thought. I had been conditioned to believe that, seeing blood meant you should rush to a hospital immediately; yet, now I expected to sit tight and wait for it to pass.

whats a periodMy first period was weird. The theory had not prepared me for the practical. I wasn’t prepared me for the sensation, duration, color, flow or the pain. I had to acquaint myself with adhesive matters, because as women, we all know, that in matters pads, the glue matters. And wings too. You are only bothered by the quality of chicken wings, until you wear a pad without wings and have to walk around with your thighs touching each other on purpose. Then, you appreciate the genius behind pads with wings.

bravery

NOTHING prepared me for the leaks, stubborn stains got a whole new meaning. To wash with hot water or cold water? that was the question of the week. Incase, you are wondering, cold water any day.

Periods are and can be beautiful.

For the longest time, I just never thought of them like that. The truth is, I didn’t quite understand them. I thought I did, but beyond the ‘monthly shedding of my uterus wall’ I was as clueless as they come. I didn’t understand what was really happening in my body, the hormones et al, and how genetics, the food I ate, the chemicals I exposed myself to could play a part in all; after all, it was just the ‘monthly shedding of my uterus wall’. I’ll talk more about this in my next post.

What was your first period like? Did it live up to your expectations, if you had any?

‘Big Sis’

Tattletale

My body is not very good at keeping secrets. I had a conversation with a friend recently about water consumption. She said that she doesn’t drink water everyday yet her skin is so smooth and supple. I was astonished. If I don’t drink at least two liters of water everyday you will see it on my lips and face.

My body is such a tattletale.

I’ve stopped viewing this as a bad thing and I am making it work out for my good. I use my face as a yard stick to see how well I am doing in the hydration and nutrition department.

My Body Is A Tattletale

It’s easy to forget to drink water when I am busy so I’ve had to be very intentional about it. I carry a bottle of water with me. I rarely drink soft drinks and have one cup of tea a day. If I’m thirsty I drink water. If I’m bored I drink water.

My body has in turn thanked me. I am not constipated ( can I hear a ‘hooray’ from all the Endo warriors?). I get less Urinary Tract Infections. My lips are not chapped and the acne on my face is clearing up, albeit a bit slowly. I feel like I could break into a song and dance as I think about just how far I’ve come. It’s truly a miracle.

I’m learning to celebrate my victories, regardless of their size. I may not be where I would like to be, But I am definitely not where I used to be.

Infusing my water with lemon has really helped. Lemon water helps with many of the side effects of Endometriosis such as cravings, nausea, indigestion, constipation, inflammation and allergies. It also helps to cleanse the liver.

I’m grateful that my body is a tattletale, it keeps me in check.

 

 

 

Kenya: Endometriosis Care & Support

There is a growing community of Endo warriors in Kenya. No endo sister should walk alone.

Thank you so much Lisa of bloominuterus.com for compiling this information.

Bloomin' Uterus

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I’ve had the pleasure of talking with a new EndoSister who lives in Kenya.  She had all kinds of questions and I would like to find her some information about Endometriosis care in or around Kenya, as well as connect her with any local EndoSisters for support.  So let the research begin!

For those of you who may not know, Kenya is a small country (about twice the size of the state of Nevada) and is located in East Africa, bordering the India Ocean.  Approximately 47 million people live in Kenya.

There are four Kenyan hospitals that came up while searching for Endometriosis care.  If you don’t already have a gynecologist, please locate one in your area or consider seeing one at these facilities:

Kenyatta National Hospital, Nairobi

Ladnan Hospital, Nairobi

The Karen Hospital, Nairobi

The Nairobi Hospital, Nairobi

The International Centre for Minimal Access Surgery is…

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