Guest post by Anusha Gandhi from Canada
I was 14 – FOURTEEN – at the time they put me on birth control. I was naive, my mother was naive, and we did what we were told. Did my mother like the idea that I was on birth control? No – because all we knew about it was that women used it to prevent getting pregnant. But here I was, at such a young age, being fed hormone therapy in order to get my periods to regulate. Do you know what happened after six months? I gained 20lb of water weight, hated the way I looked in the mirror, stopped the pill altogether, and started starving myself instead. My mother noticed me skipping meals – along with my irritability, stemming from teenage hormones exacerbated by starvation – so my eating disorder was contained. But, needless to say, the pill was grossly under-tested, and over-prescribed.
By masking the pain with these hormone therapies, we mask the root cause – this disease which, in reality, is associated with much more than just painful periods. Take me for instance: I was fed the birth control pill for 12 years until I was ready to conceive. But conceive I could not. It was only at this point that I was referred to a fertility clinic, to be told I likely had a disease called endometriosis – where tissue similar to the lining of the uterus grows in other areas of the body. If they had told me about this 12 years earlier, would I have done anything differently? I may not have, but my doctors surely should have.
That’s the fundamental problem with the diagnosis and treatment of endometriosis. This disease affects one in ten people who menstruate; not a small number. The gold standard for endometriosis care is excision surgery, whereby the endometrial lesions are extracted from their root through a laparoscopic surgery. Many doctors refuse to do this surgery right away because, like anything, there may be repercussions. But ask any person with endometriosis suffering from cyclic and/or chronic pain, and I bet you they would take the repercussions over the quality of life they are currently living.
Hold onto your hats though people; not so fast. There is a ladder approach. Why, you ask? Because we have all these drugs to test on you first. After the combined birth control pill we have progestin only pills, or an IUD that releases progestin locally to the uterus. If those fail, we have repurposed drugs that are intended to stop hormone production. If you’re not keen on the injections we have a pill form for all you pill lovers. We can only put you on this drug for a year though, and sadly it may not work because endometriosis manufactures its own estrogen. We know this drug should not be used diagnostically, but we can buy you some time before we eventually have to do surgery.
Alright, you have climbed the ladder to the top rung. Surgery is what you wanted? Great. But all of the gynecological surgeries are shut down due to the pandemic, so we will call you back at a later date. Hopefully you’re not in too much pain but, if you are, take some tylenol.
Most recently I waited seven months for my third surgery, and in part the reason I was called back that quickly was because we suspected the endometriosis was all the way up to my diaphragm. I underwent a six hour surgery, was sent home the same day, left with six new scars and only six morphine pills. I was in a world of recovery pain, but the pain I’d suffered from both the endometriosis and the adhesions from my previous surgery was gone immediately.
So why did I have to climb the ladder just to get to the procedure that we knew would help me? Maybe not permanently, and maybe not completely, but immensely better than any of the other rungs in the ladder. I would love to blame this one on pharmaceutical companies, but honestly they haven’t even created a single medication for the purpose of treating endometriosis, so I’m gonna go with gender bias on this one. Even though we now know it’s a whole body disease, and not solely a gynecological issue, endometriosis continues to be regarded as such. Is that why we have a deficit of knowledgable doctors who can treat this disease? Is that why we have to wait for surgery? I don’t know. But, to be honest, I’m really tired of climbing.