The core of my soul holds a secret. I am afraid, afraid to speak.
I am afraid if you knew what was growing inside of me, if you could see it, I would be viewed as bleak. As if it isn’t hard enough having this deeply ingrained idea that I owe anyone an explanation of anything at all—of my sexuality, my being, my pain; it is all fear programming.
Reproductive illnesses and the lack of knowledge in the medical community, the lack of knowledge in general, has lost me more than almost the entirety of my reproductive organs.
Having several reproductive illnesses is like sitting on your couch, watching an intruder enter your home, and rob you of everything. Being convinced that nothing is wrong.
Being queer, non-binary, and having reproductive illnesses is like having that intruder say to you “but you know you’re a girl right?” What can you do, when even your identity is being robbed?
I cannot make my bed but I can lie in it. I pull myself up by my fitted sheet, with full intent on telling my single father who is raising two daughters alone: “something is wrong with me.” I was raised a devout Catholic. How do I tell my father that I am in so much pain that I would rather die, burn? As if it didn’t already feel like I was. So I tell him, again, and he makes me an appointment with a gynecologist. My general practitioner told him in front of me “some girls just have bad periods.” But wrote me the exception of seeing a specialist anyways given I was almost pronounced truant from missing school.
Something my “mother” used to say to me often was “if you’re not bleeding, burning, or on fire, suck it up.” I was all of those things at once when the gynecologist performed a trans-vaginal ultrasound. Telling me that I have Polycystic Ovarian Disorder and that the only way to treat it is through birth control, pain management. That if I bleed through a pad in under an hour to go to the hospital. All at once everything fell apart. To my father, being on birth control meant that I was sexually active. The stigma, misinformation, and lack of information on women’s reproductive disorders almost entirely prevented me from getting proper treatment.
How many times do I have to do my own research just to find out that I was right. How much time in between this was I still being told “You are fine, we cannot find anything wrong with you.” How the people surrounding me had trouble believing me, if at all, after a fifth doctor said we are all “wasting our time.” Oversharing has become a problem because doctors don’t listen to me. So every day I feel something more and more missing, until I found the online endo community. Quite frankly I had misplaced my entire mind at this point. I was missing work so often, I was bringing a change of pants and undergarments for myself that I kept discreetly in my trunk, because by the middle of my shifts I had already bled through my uniform. At 22, ten years after being diagnosed with PCOS, I had found a specialist gynecologist that believed I was in pain. They performed a diagnostic laparoscopy/excision and I was officially diagnosed with endometriosis. Still I was not believed, not even with an official diagnosis.
Fear programming is the idea that people with reproductive illnesses are lying, that it is all psychological. That some periods are just unfortunately debilitating. Fear programming is me going to the hospital five times for what came to be a life threatening ectopic pregnancy, being told the only reason I was in the ER was for pain medication, and that I am an opiate addict. Fear programming is being on my deathbed, having my father and significant other at the time step out of the room while I sign paperwork stating that I may likely die as a result of the other emergency rooms neglecting me.
In 2020, at 25 years old, having had so many reproductive/abdominal surgeries, the best route for me given how badly this was affecting my quality of life, relationships, and mental health, was a hysterectomy. I got a full hysterectomy, and the pathology lab confirmed that I in fact had adenomyosis in my uterus. Fear programming is being too traumatized, and exhausted by constantly having to self-advocate. That it is almost easier to not go to the hospital, than to have to deal with how people in the medical field treat people with reproductive illnesses specifically.
Story by Danielle Tobin (they/them), Michigan USA