I don’t know if the old saying “time flies” is true. Sometimes I wonder where my day has gone — especially in wintertime. But when I think about my previous surgery, it doesn’t feel as if it was yesterday. And it was a relatively long while: two years ago.
I had fought hard to have the surgery, and it was performed by one of the United Kingdom’s top endometriosis specialists. He used both excision and ablation techniques. He informed me that I had a very complicated case of the disease and that he’d removed everything he could. Luckily for me, he avoided touching any of my organs.
For a while the surgery was life-changing
I recovered full control over my bladder, and sexual intercourse stopped being painful. My periods ceased to be the horrific monthly event I had endured since age 12. It felt liberating but unsettling to suddenly realize how the rest of the world lived. My periods were uncomfortable, but they didn’t confine me to bed or leave me sedated with copious amounts of painkillers.
Yet, five months later, my painful periods returned with a vengeance and worsened over time. Or maybe they didn’t and were just as bad as before. But I had turned into a useless blob, and the pain was so brain-numbing that I lost the ability to judge anything objectively.
And then came my dalliance with hormonal treatments, losing a huge amount of blood during a very scary night in Brooklyn, far away from home and my support system. It took a specific type of progesterone to free me from my monthly torture. Now my periods are under control, but not everything else.
Shortly after my surgery, I began experiencing a different sort of pain, a sharp tug I’d never felt before. It seemed as if it was scar tissue, a byproduct of the procedure. Last Christmas, my specialist advised further surgery to treat it, but I decided to press “pause” on that option.
Last week, I spent three days bent over in pain, twice falling to my knees. The tug got so bad that I was forced to seek medical help. My doctor prescribed some painkillers, and I am due to have tests that I hope will show nothing more than the pesky adhesions the specialists identified.
I can’t deny it: I am a tad stressed. It becomes especially tough at night when I overthink all the “what-ifs.” I lie awake, anticipating the many talks with doctors, the offers of treatments that won’t cut it — that may or may not provide relief.
Two years on, I am grateful for my surgery, but I don’t want any more
It doesn’t help that I increasingly believe doctors are looking at this disease the wrong way. We are missing something when all that is on offer are complex surgeries, hysterectomies that don’t cure the disease, or hormonal treatments that “treat” nothing.
Sometimes I could easily punch a wall, but then I remember that I’m tiny and the punch will hurt me more than the wall. When I have a bad day, it is hard not to see life as the toughest uphill climb. There’s horizontal rain and heavy winds, and I am wearing the wrong kind of shoes and the flimsiest of jackets.
However, this mountain is my own, and endometriosis is part of my life. I will deal with it my way, just like I did last week when I went to a live gig, wrapped in a comfy coat, with codeine in my handbag. This disease may be a master saboteur, but I am a pro at making it work, endo warrior- style.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.