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The first time I got my eyebrows threaded – an already painful experience – I didn’t really get a chance to admire my newly sculpted eyebrows because I was running out into a cobbled shopping square to throw up. This was the last straw after several similar instances triggered by my period before my mother decided to take me to a gynecologist.
If there’s one thing about endometriosis and all the information that surrounds it, it’s that it’s full of contradictions. Technically, the only way to positively diagnose endometriosis is through a diagnostic laparoscopy, but both my gynecologist and the specialist she referred me to needed only to hear my symptoms to tell me with certainty that it was what we all suspected.
I was incredibly lucky to land on both an experienced and incredibly compassionate endometriosis specialist. He explained the condition to me in detail and had a tendency to sketch elaborate diagrams to visualize his descriptions. After a while of trying the first line of treatment – oral birth control, I saw improvement in some symptoms, but new ones would arise. Eventually, my doctor made an analogy about a broken car that you can keep fixing up with tape, or you can replace the whole thing. In retrospect, it’s kind of a weird and not super applicable analogy that somehow made more sense to me at seventeen, but I got the point and decided to go ahead and get a laparoscopy.
This is another point of contradiction. In theory, a laparoscopic excision by a skilled doctor should remove all endometriosis, or at least any visible form of it. Yet it’s incredibly common to hear people with endometriosis getting the procedure redone several times throughout their lifetime, especially the younger they are. I’ve essentially been told that the symptoms which, in my case, slowly crept back on me after a few months of respite, are unlikely to be caused by any remaining endometriosis and that the remainder itself is unlikely, but patterns seem to show that patients are more likely to need multiple laparoscopies the younger they are – and seventeen is starting to look awfully young to me. Then again, what else was I supposed to do?
There are other treatments, and again, opinions on how effective these are contradict based on who you hear them from. The way it was described to me, fulguration or ablation, which involves the destruction of the uterine lining, is basically archaic since it doesn’t actually cure endometriosis. But I can’t really get a clear answer on whether a laparoscopy can “cure” endometriosis either (it’s understood as an incurable disease), and still hear about ablation for endo every so often. Similarly, hysterectomies have been conveyed to me as a large sacrifice for low reward, since endometriosis isn’t confined to the uterus. But I’ve heard and read stories of people who suffer from endometriosis feeling significantly better after a hysterectomy. There’s also a strong suspicion between myself and healthcare providers that I also have adenomyosis, which is like endometriosis flipped inside out, which a hysterectomy would cure. But the responses to conversations I’ve brought up about hysterectomies have been discouraging.
If someone were to express concern about the prospects of a hysterectomy because of legitimate health risks like pre-menopause or prolapse, I’d be all ears, but I’m less open to people’s weirdly emotional speeches about the potential removal of my uterus. If anything, it feels like I’m missing out on genuinely valuable information that could influence my decision – someone else’s emotions not being one of them. As far as bizarre and dismissive medical conversations, I’ve mostly been spared, but I’ve also been told that excessive bloating, rather than the likely cause of a lovely endo/adeno duo, is just part of being a woman and that I should eat less broccoli.
As it is, for someone with endo, I don’t have it too bad. My symptoms are mostly endo-adjacent at this point, and I’m really lucky to have access to the healthcare that I do. But even as typical endo symptoms aren’t as prevalent for me, endo has left its mark in other ways. Trying to suppress my period is never fully successful. My pelvic floor is wack and I can’t really be convinced it’s not endo’s fault. All my symptoms seem to center around my uterus, which seems too convenient a coincidence to me. I’ve been holding a grudge against my uterus since I was twelve, and I’d be happy to see it go if it were easy and painless.
I also want to add that period-associated symptoms of extreme pain, vomiting, passing out, and not being able to walk – none of these are normal, though they seem unfortunately common. I worry when I hear people discussing these as if they’re just typical menstrual symptoms when they can be indicative of underlying conditions. Even if they’re not, there are treatments to help lessen painful symptoms.
Research has come far in past decades for women’s health but there’s still a long way to go. It’s wild that women have to fight to be accommodated to not be in excruciating pain when getting IUDs and still face restrictions on procedures based on non-existent future partners and children. I hope helpful changes and answers come for us all sooner rather than later.