Disability / Lived Experience/Memoir

Ovarian Cysts

For ten years, I have been experiencing irregular episodes of such acute-onset, severe pain that I am unable to function. Today I found out that the cause is two ovarian cysts on my right side–coincidentally, directly underneath one of my smallest tattoos. One of the cysts is just shy of an inch  in diameter, and the other is an inch and a half in diameter.

When I received the news today, ten years of crippling pain welled up within me in an instant. My entire lifetime of gender-incongruence rapidly followed. I recalled every time I woke up with such horrendous pain that I couldn’t believe I was conscious–every time I spent an entire day crawling back and forth between my bathroom and my bedroom, so sick that I couldn’t keep water down, and so tired that I was having a breakdown every time the sickness came right back as soon as I laid down.  Every time I’ve been in the throes of one of these maddening episodes, and I couldn’t sit upright or stand because it felt like my insides were going to drop out of my body from between my legs, came right back.

I’ve even been taken to the emergency room when I couldn’t walk, when a woman I didn’t know couldn’t leave me alone in the train station where I had been waiting for the pain to even marginally subside–just so I could make it to the elevator–for over ten minutes. The deep sense of humiliation arose again, from being told by the first medical doctor who had an answer, that it was all because I have the power to have a baby I’d never want. Compounded by the experience in that ER so many years prior, of being dumped off in a ward where all they do is take your insurance information to bill you for the ambulance, because they think you’re faking it and they have other priorities to deal with.

Then there are all the times I couldn’t walk while I was just ovulating, because my pelvis, knees, and lower back were in so much pain, that all I could do was lay down and stuff a pillow under my legs. Go home early from work in a taxi and just lay there, helpless and alone, waiting to pass out and be done with it. I’ve heard of women who could tell when they were ovulating, but this is multiple degrees of intensity, far beyond simply knowing it’s happening.

If all of that wasn’t enough, not even taking into account the complex arising out of my gender dysphoria and my history of growing up in a household where I was terrified of my parents because one was sexually assaulting me while the other was deadpan and consistently silent, I also have had a bizarre bunch of symptoms for years that only now make sense in light of this diagnosis. Changes in the way my body operates that make me physically and emotionally uncomfortable, that evolve spontaneously and disappear just as spontaneously. Random spasms in my chest walls that left me breathless and pale, and have previously been investigated with blood tests for the detection of minor heart attacks, and lung cancer, and chest x-rays, and electrocardiograms–all inconclusive.

All of this is caused by pockets of fluid either in or on an organ I don’t feel I ever should have been born with. My instinct was right on the mark in that office where I was told “Oh, it’s because you’re fertile,” but it took years after the fact for anyone to listen for long enough to fill out a requisition for diagnostic testing. In fact, because my appointments with my primary physician have been reduced over the years from an average of 13 minutes to approximately 40 seconds, I had to find a second general practitioner to talk to, just to be heard on this issue. And in all honesty, it’s only because of the gender dysphoria that I’ve been this persistent. It’s only because I have nearly died, many times, trying to end my physical and emotional suffering, that I recently became aggressive in my pursuit of a total hysterectomy. I thought I finally had a medical reason until I was told it was my ovary, not my uterus.

Now my mind is going back to my childhood. Regressing back to the time period in which I felt that difference that could very well threaten my life if anyone finds out about it–when I packed it down inside myself and tried to move forward–invisible, silent, and desperate to be an unremarkable person.

I remember being 7 years old, standing nude in front of the mirror attached to my new dresser, staring at my body, and wondering where parts of it went. I remember thinking I was approximately a boy, but not quite really–but where did these missing pieces of me go? How do I ever tell anyone, when I’m living in a house with no one to talk to, where children should be seen and not heard, and where I can’t even begin to tell the one parent I feel able to talk to, because I know she won’t understand me? I remember probing my body as if I was trying to figure out how human I am–trying to find any trace of scars that confirmed my identity as not-some-sort-of-an-alien. I remember the emotional shock of hearing the word “hermaphrodite” spoken as a slur for the first time–recognizing myself in the meaning of that word, while simultaneously realizing the full threat of identifying with it. I remember trying to push my feelings away, of being anatomically incomplete, until it would be safe to utter even a single syllable of it in private.

I remember waking up in the middle of the night–still 7 years old–with a sheet from my bed wrapped so tight around my neck, that my lips were blue, my skin ice cold, and my heart hammering against my chest. I had just been dreaming about floating in mid-air down a dark tunnel lined with mechanical parts of computers, and moving into a white light, passing through it into a room where I was witness to innumerable child-like figures being violated with physical and sexual battery, and then suddenly waking up, feeling like I hadn’t been breathing at all for some time. I remember not telling anyone for ten years about these experiences.

I remember the first time I told someone–a person I thought I could trust–that I was afraid. I told him I didn’t think I ever had  anything between my urethra and my back nine until I started bleeding for the first time. Silence. I panicked. I didn’t utter anything again for two more years. It was shortly after this, that I had my first event with the pain–that was the time I was taken to a hospital for it (the hospital reputed to never let anyone out alive). Then I went on birth control, and my body–along with my ability to speak to doctors–changed permanently.

The time came to let out some of the pressure that was building up inside me over my gender. A different person this time–I told him I thought that something isn’t right there. I didn’t know if there was something missing, or something there that shouldn’t be, and I didn’t know where to find any way to confirm that I am, in fact, “an anatomically complete female” (literally, those are the words I chose). That same silence. That same panic. Another two years with my mouth shut. I started to have my first episodes that wake me up out of deep sleep with indescribable pain and an entire day of sickness–and mid-cycle episodes of bone pain in my knees, pelvis, and lower back.

I found out about intrauterine devices that don’t have hormones in them, and aggressively pursued one. Every barrier I ran up against in the process unleashed a unique kind of rage. I tried to come out again, and to more than one person this time, and generated tension in multiple relationships that resulted in multiple outcomes–mostly termination and distance.

Then my doctor thought she saw polyps. That meant cancer. That meant a non-emergency referral to a specialist, but without delay. That resulted in being told I have a healthy organ that can grow people–that made my uterine rage immeasurable.

And now, years later, I have survived to come out as trans without exception, and am strong enough to stand alone if I have to (and many days, I do feel I am standing alone). I have resolved to say “Take this uterus and huck it across the room–I don’t want it, it shouldn’t have ever been there.” But in the back of my mind, I know there is a possibility–however unlikely, it’s still possible–that I’ve just received the threat of cancer (in an organ I never believed I even had until it was undeniably evident in the blood on my underwear) for the third time, and I’m not even 30 years old.

All I want now is for the removal of the entire system, even though that means I’ll be injecting testosterone weekly for the rest of my life, will have to endure a psych consult to access this surgery, and will be required to do  an additional (allegedly non-invasive, but I beg to differ) series of diagnostic testing for the next couple of years before it will be done. I need my strength now, more than ever before.

One thought on “Ovarian Cysts

  1. Pingback: Six Months On Testosterone « HaifischGeweint

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