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.
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.