The Silver Lining to My Endo Story


I started my menstrual cycle at the age of 11. I was made to believe that menstruation is painful and that I just need to suck it up. No one wants to be seen as a sissy so I continued handling the pain as best I could. 

One day, at the age of 16, I was on my menstrual cycle and began feeling ill. I was  bedridden, cramped up in the fetal position, with the most horrific pain coupled with nausea, cold sweats and dizziness. I was rushed to the hospital where tests and physical exams were performed. My iron levels were extremely low and further tests pointed to Endometriosis.

The doctor immediately booked for exploratory surgery the next day and stage 4 Endometriosis was confirmed. It was aggressive and had already grown on my uterus, fallopian tubes, ovaries and bowel. A lemon-sized chocolate cyst found on the ovary also had to be cauterized.

At this tender age of 16, I was cautioned that I might never bear children of my own. I was gutted… That is every girl’s dream. Getting married and having a family of their own. I was put on contraceptives to regulate my cycles. I managed to soldier on and had great but mostly trying days. The pain would start 1 week before, the week of and last until the week after menstruation. I only had 1 pain-free week in an entire month.

Having surgery became a yearly routine. I would end up getting cysts which caused extreme pain leaving me bedridden, curled up in a ball and not being able to eat or sleep no matter what painkillers I took. This carried on for years.

I got married at 22 and we started trying to conceive. The disappointment of negative pregnancy tests month after month was harrowing. Trying to conceive became a full-time job. I still had yearly surgeries in hopes that the Endometriosis would be completely eradicated but I was wrong. The battle was not over.

At the age of 26, I prepared for major surgery when I finally found a specialist who was experienced to do a resection on my Endo-riddled bowel. The Endo was still as aggressive as before and my fallopian tubes were removed as well. Further reports revealed that the  Endo has spread to my bladder, inside my uterine wall as well as adhesions that fused my internal organs.

We realized that conceiving naturally would not be possible and decided to give IVF (Invitro fertilization) ago. We saved up for over a year and managed to start the IVF process. Unfortunately, that yielded negative results. We still had frozen embryos in storage at the lab and ventured into the possibility of surrogacy. We found a suitable candidate but that route also proved to be fruitless. It was a heartbreaking experience I wished we have never met.

I had given up hope and yearned for a somewhat normal and happy life. We decided to not actively try to conceive any longer although it was still stuck in the back of our minds. I managed the pain with nerve blockers and painkillers over the following years. I had just turned 31 and was overcome with excruciating pains once again. The painkillers were no match for what I was experiencing. I already knew that the Endo has returned and with a vengeance.

I plucked up the courage and consulted the specialist. I was immediately scheduled for surgery where I was prepared for the worst-case scenario.
After surgery, the doctor popped in and gave the report: “Your uterus and ovaries had to be removed. Your organs were fused, you also had a large mass between your uterus and rectum which we had to excise.”  I felt a large lump in my throat…This is it… our dream of becoming biological parents has come to an end.

Two weeks have passed since the surgery. I woke up one morning with severe pain and knew something was amiss. The doctor wanted to see me right away… It so happens that I had a complication from the surgery and developed a fistula. After the devastating news from my hysterectomy, I didn’t think anything could be worse. Yet, here we were, doctor morbidly telling me: “Your body is too inflamed to fix the fistula. You need a Stoma (ileostomy) for approximately 4 months.”

I had surgery the next day. I was now the not-so-proud owner of “Farty”. Yes, I named it. It’s a thing amongst the stoma community.

Three months later I was approved for fistula repair and had the surgery. This was by far the most difficult one to recover from. I still had to tolerate Farty for 6 more weeks and I finally had the Stoma reversal.

The silver lining in my journey happened when we welcomed our adopted son into our lives; just 4 months out of my recovery. Everything that happened in my life was in preparation for this breathtaking moment. I fell in love even before I laid eyes on him. At just 3 days old he was in our care. I quickly learnt that pregnancy does not make you a mother. We are born  nurturers. And I loved him as if I birthed him. He is and will forever remain the greatest blessing in our lives.

Dee Mangera