Endometriosis: Jenn’s StoryWritten by Jenn Glinski
by Jenn Glinski
I became a feminist when I was diagnosed with endometriosis at 17.
During my diagnosis and treatment I came to feel that my reproductive system mattered more than I did. As a direct result I became passionate about reproductive health and women’s rights.
My condition does not define me, it never has, but it has shaped my life in ways I never expected.
I never had regular periods, but since every woman’s menstrual cycle is different I didn’t think much about it. However, when I found myself lying in bed with debilitating pain every month I had to ask if this was, in fact, normal.
Everyone seemed to think it was. I was told to ‘suck it up’ and stop overreacting. After all, it was just menstrual pain.
Endometriosis affects every woman differently but for me, before my diagnosis, all I can remember is pain.
It was the kind of pain that took your breath away and everything else around you would disappear because all you could focus on was the pain.
Even worse, it was unpredictable and could strike anywhere: in the classroom, at the cinema, on a first date or sitting at the dinner table.
I insisted my mom take me to the local OB/GYN in order to discuss my symptoms. The doctor immediately asked about endometriosis and it was decided that due to my young age and severity of symptoms the only way to diagnose and treat me was through a laparoscopy.
I agreed, but I was uncomfortable with how the conversation had developed.
The surgery seemed more about saving my reproductive system for future childbearing than about managing my pain and allowing me to lead a productive life. At 17, having children was the very last thing on my mind.
I understand this type of thinking: imagine the doctor hadn’t raised the question? Years later, if I had wanted children, I might not be able to conceive because my condition hadn’t been managed appropriately.
It makes sense, but I felt reduced to my reproductive system instead of an individual with goals other than having children someday.
The laparoscopy was a success. Stage 3 (moderate) endometriosis had been detected, and the growths removed as best as possible. However re-growth was likely so I was started on a hormonal treatment which would hopefully put the endometriosis in a type of remission or at least slow the growth and ease the pain.
I was put on Depo-Provera (a contraceptive injection) for nearly three years. The potential side effects of Depo-Provera are plenty, one of the scariest being loss of bone density.
At 19 my bone density was beginning to look like that of a 69-year old. I was again baffled: saving my reproductive system seemed more important than losing bone density and this was bizarre to me. From then on I made the decision to take oral contraception and hope for the best.
Even with treatment I still experienced occasional episodes. I call them the night terrors: when you are woken in the middle of the night by a pain so severe you cannot breathe or move but just lie there waiting for it to pass. The night terrors could last minutes or hours. I haven’t had one for many years, but they’re impossible to forget.
I make a point of speaking to friends, family, even acquaintances about my condition. As a result, two close friends sought advice, were also diagnosed with endometriosis, and are now managing the condition and leading happy and successful lives.
I truly believe that sometimes we just need that external validation for something we already know to be true with our own bodies; that intrinsic knowledge that something just isn’t right.
It’s now been 13 years since my diagnosis; I’m so grateful that I caught it early, so that I have learned how to live and manage my endometriosis (and to always pack an overnight bag with an arsenal of painkillers, just in case).
The most important thing I have learned throughout the journey is not only to trust myself and my body entirely but to make sure that I am in charge of the decision regarding myself and my body.
I owe this awareness and understanding to endometriosis; it put me on my career path of women’s rights and reproductive health and for this I am thankful.
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Jenn Glinski is a PhD researcher on violence against women at the University of Strathclyde and a women’s rights advocate. She has a LL.M. in International Human Rights Law from the University of Essex and has been active in human rights for eight years. She has organised international conferences on maternal mortality, taught human rights at the Asian University for Women in Bangladesh, and co-authored the Harvard Initiative on Violence Against Women report on Scotland. Jenn, originally from Michigan, USA moved to Glasgow in 2011 and lives there with her fiancé and their black lab, Hector. Tweet her @jennski_27.