Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

image: art by carrie joy

When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

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The Endo Blues ~ Battling With Depression

I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.

Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.

I was depressed, and I had no idea.

The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.

My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.

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I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.

I felt alone.

I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.

My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.

You can reach me via yellowendoflower@gmail.com

You are not alone.

 

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