My story with endometriosis dates back to my teenage years. At thirteen, I had not started seeing my period. In boarding school at the time, I secretly envied my female peers as they performed the rituals associated with that time of the month. They’d wear special underwear and sanitary pads, walking around with a cardigan tied around their waist in instances where their uniforms had gotten stained. I worried about my delayed menstruation because my older sisters started theirs at ages ten and eleven. But had good news a few days after my fourteenth birthday, in the form of a strange sensation in my lower tummy, arms and legs. I had read that these were signs of the period. Excitedly, I ran to the bathroom and there it was—a streak of red in my underwear. Finally, I could feel like other girls!
Little did I know that the arrival of my period was the beginning of a long, daunting journey of pain and medical investigations.
Battling With The Symptoms
My periods started off irregular, but my mum assured me that this was not unusual in the early stages of its arrival. And as if to confirm her opinion, the periods stabilized and became more consistent. Suddenly, the same period I had once craved and anticipated became something I grew to dread. Each period came with severe, debilitating pain—sometimes plunging into my belly, legs and back, like the sharp stab of a knife. It was so bad that everyone in my class knew when I was on my period because I would be absent from school. Some of my school mates would snigger and make comments like:
“Na wa o, are you the first?”
“All of us have periods now”
“Leave her she’s looking for attention”
It made me embarrassed and self conscious to the point I even tried to downplay my symptoms. I’d report to the sick bay and the nurses would give me regular painkillers which hardly made any impact on the pain. There were months that were not too bad. As I grew older, I experimented more and more with painkillers, mixing and matching and sometimes getting relief.
Deciding To Seek Help
One day, while sitting through lectures in the university, the pain started again. I took the medication I had in my bag but it only got worse. It was so severe that I doubled over in pain. Then, I passed out. By the time I woke up, I was in the hospital and my mother was with me. I was told I had appendicitis and would be going in for surgery. This was quite scary, but I was willing to go ahead just to make sure I never experienced that pain again. After the surgery, we discovered that there was nothing wrong with my appendix.
A few weeks after I was discharged from the hospital, the pain returned. I was readmitted to the hospital. The doctors decided to take me back for another surgery to check if I had an obstruction. I couldn’t believe it, another surgery?! But it did not feel like I had a choice, so I went for the surgery and once again was given the all clear. This was the last straw. I decided I needed to know the exact cause of the pain, so I started doing some research online to find a specialist doctor. I found one with good reviews and I convinced my sister to go with me. When I explained my symptoms to this new doctor, he told me it sounds like I may have a condition called Endometriosis.
Confronting the Giant Called Endometriosis
Endometriosis is a medical condition found in women where the tissues of menstruation that cause inflammation are found outside the uterus. The more I learned about it, the stranger and scarier it sounded. The symptoms suddenly felt familiar. Then the doctor gave me the bad news. The only way to be sure I had endometriosis was to have another surgery. At this point, I lost all interest. I wasn’t willing to put my body through that stress again. But the doctor promised that it would be a minimally invasive surgery. A camera would be passed through a small hole to have a look inside my belly. The procedure is known as a laparoscopy. He took his time to explain the surgery to me and asked me to take my time to come to a decision. Five months later, after discussing with my family, I raised the money required and went in for the surgery. The laparoscopy confirmed the doctor’s suspicions. I had endometriosis.
There were several “chocolate cysts” seen around my pelvic region. The doctor explained that these chocolate cysts are actually bits of tissue normally found inside the womb. The bits of tissue that usually breakdown every month and come out as a period. So these tissue deposits outside the womb also try to do the same, hence the excruciating pain. The good news was, most of the cysts had been removed during the surgery. The not so good news was that the cysts had a propensity to return. So the doctor recommended a special injection to help “keep things quiet”. I had to take the injection every month for six months to suppress the endometriosis and reduce the chances of a recurrence.
The Journey Forward
It’s been a year since I had the last surgery and I’m glad to say that I no longer live in fear of my period. Although the periods are not yet completely pain free, they are also no longer debilitating. My life has some semblance of normalcy. There are still hurdles ahead because endometriosis has other complications. For now, the reduced pain is enough victory to celebrate. Next week, I’ll up the scale by discussing practical ways from a medical perspective to identify and treat the symptoms of endometriosis.
If this story sounds familiar to you, or you know any woman who has gone through this experience, share your experience with us. Tell us what worked, what did not, and how you have been living your best life still.