I got my first period at eleven years old. Early, but not exactly unheard of. I went through the familiar rituals of congratulations from my female family members along with gifts of pads and chocolate. I got brochures and books on the matter, along with a talk about the birds and the bees (I was fortunate enough to come from a family where discussing these matters was not taboo). It was strange how a spot of blood in my underwear suddenly became a marker in my journey to womanhood, but it was something I felt a sense of pride in all the same.
But then something changed. My periods went from a few drops of blood to soaking through my underwear, they lasted five days and would come back every two weeks. It was a relentless cycle of agonizing cramps and crippling headaches. I bled so much my pediatrician became concerned about anemia, and so I was put on the pill. The consensus was that my body was simply still figuring itself out and needed time to regulate, and so in the future I would be weaned off once things settled down. They never did. Each attempt to wean me off the pill would be followed by the same intense bleeding and pain, and thus I would be put back on. My mother, concerned I had inherited a thyroid disease from her side of the family, would have my blood periodically tested for abnormal hormone levels. Every test came back normal.
It is important to note at this point that I am also Autistic, a sensory disorder marked with either hypo or hypersensitive reactions to stimuli. So my doctors theorized that I was simply having hypersensitive reactions to the cramps, my mind interpreting them as more painful than they actually were, but this still didn’t explain the extreme heaviness and frequency. This journey which I thought would connect me to my peers, which I thought would let me into the club of maturing young women became a burden. None of the other girls were on birth control, none of them complained of needing blood tests or work ups, and the only inconvenience they spoke about were cravings and irritability.
Then the rest of my body changed. My stomach stuck out so far it looked like I was pregnant, my body hair became thick and dark, and my skin became covered with such bad acne they were borderline lesions. My doctor’s response was to give me the classic ‘lose weight’ talk and I cycled through several skin creams and skin care regimes. I completely gave up on shaving, dragging a razor across my already sensitive skin just resulted in my legs looking like they got burned.
When I turned nineteen, I finally had enough. I left my pediatrician and found a new primary doctor. She sat and typed her notes on her laptop as I went through my history, listing off each of my symptoms and nicely asked which ones I wanted addressed. After I was finished she had a few diagnoses in mind, first and foremost being PCOS (Polycystic Ovarian Syndrome). I was sent to a gynecologist, who went through my symptoms with me once more and ordered another blood test. By this time, I became weary of tests. I became used to no answers, to being told there was nothing wrong with me. The phone rang. I hesitantly picked it up; “Your results came back, we didn’t see anything abnormal.”
My heart dropped into my stomach as it seemed what I feared had been confirmed, another dead end. But then the nurse on the other end said “But we expected that, since you're on hormonal birth control.”
The feeling was similar to the one you get when you couldn’t find something that was right in front of you. Of course hormonal medications could affect hormone tests, why didn’t I realize that? Why didn’t my previous doctors, or the phlebotomists who drew my blood?
She went on to explain that since I met criteria for most of the symptoms, the doctor felt comfortable diagnosing me with PCOS. The diagnosis was a blessing and a curse all at once. It was an answer to my problems, but an answer that brought more questions. I became extremely dysmorphic, the hatred I had for my body all turning inward. For those who don’t know, PCOS occurs when a body with a uterus produces a large amount of androgen instead of the small amount required, thus resulting in typically ‘male’ features and the disruption of bodily functions such as menstruation.
I became angry at my body for producing the ‘wrong’ hormones, for burdening me with these symptoms. I cried in the shower and hated seeing myself in the mirror. My body hair, my large stomach, my ‘manly’ features were glaring reminders of my condition. How was I going to explain this to future partners when I barely understood it myself? Did my family members know how deep it cut when they joked with me to lay off the sweets or that I had bigfoot legs? I began seeking out ways to be approved for a hysterectomy, even ways to make myself sick enough to need one. Hysterectomies are usually only a last resort for PCOS and don't cure the condition, I just wanted a way to punish my body for its perceived failure.
There was a moment that changed everything though. I don’t even remember where I heard this (did I read it on a blog? Hear it on the radio? Watch it on TEDTalk?), but there was a phrase that put everything into a different light.
“Don’t punish your body for doing the best with what it has.”
My body was not trying to sabotage me in any way, shape or form. It was just doing the best with what it had, and I needed to be kinder and patient with it. After speaking with my gyno, we decided a hormonal arm implant would be best for me. I learned weight loss diets were not only very harmful in general but especially to folks with a condition like mine, so I educated myself more on nutrition. I found a brand of razor which was gentle on my skin, but still give breaks when it begins to become irritated.
This isn’t to say I’ve achieved perfect balance. I still have days where I eat more sweets than I should, days where my skin breaks out and times where I still have bad thoughts about my body. It’s a journey full of ups and downs, one that will last my whole life. There is also the bigger picture of intersex folks being left out of medical studies, feeling the need to fall into (or worst yet be forced into) an accepted binary, and being discriminated against (such as the case with Caster Semenya in the Olympics). This is why it’s quite ironic when people say a condition ‘doesn’t define you’, when the opposite is true.
I am intersex just like I am autistic, queer, and feminist. I am intersex just like how I like the arts, my pets, and medical documentaries. It does define me as it is a facet of both my identity and my life, and it’s not something to be ashamed of or needs ‘fixing’. I live with it on both my good days and my bad days, and I will keep doing so.
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