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.
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.
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.
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.
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! !
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.