Hello All.
My name is Bat. I’m 30 years old, from the United States.
As some background:
In March of 2021 I was hospitalized for six weeks with what was thought to be a bipolar break or schizophrenia. When I became physically unwell, and the psychiatric meds were no longer working, by chance one of my psychiatrists thought to run a blood test for Anti-NMDAR Encephalitis and it came back positive. Anti-NMDAR is an autoimmune condition where the body makes antibodies that attacks the NMDA receptors of the brain. It can cause memory loss (I remember maybe the first three days in the psych ward, and the last six in the general hospital), hallucinations, autonomic instability of the heart, it made me incontinent, I couldn’t walk, I couldn’t talk or understand what people were saying to me. The only thing that it usually causes that
I was thankfully spared from is seizures and a coma. I was treated with a 5 day course of steroids and went pretty much into immediate remission.
When they found I had this condition, they went looking for a tumor because this type of encephalitis is caused by a benign tumor called a teratoma in people assigned female at birth over 50% of the time. The Hospital I was being treated at noted ovarian masses on both ovaries, but they didn’t have a gynecological surgical department, and since I was stable, told to follow up with my gynecologist on my own. My Ca125 at the time was 26, in the normal range.
After reviewing my scans my gynecologist, whom is the sweetest doctor I know, suggested I see a gynecological oncologist, not because we expected cancer at the time, but because by the look of the scans it was assumed to be some heavy duty endometriosis, and that she would be more adept at doing the necessary surgery via laparoscopy, and reduce the chance of having a full open procedure.
I had to get rescanned and have another blood test with my new surgeon before surgery. The cyst on my right ovary was totally gone, which was good news, but the left still persisted, bigger in some dimensions but smaller than others. My Ca125 then came back elevated at 81. I was concerned, but I knew that endometriosis could cause the elevation. I would also be undergoing a hysterectomy, as I’m also Agender and had no plans to use my uterus. I had wanted to keep both ovaries if at all possible, but it was imperative that I keep at least one ovary, since for my transition I wanted a complete balance of estrogen and testosterone.
When I woke up from surgery I learned it wasn’t endometriosis. It wasn’t a benign teratoma. It was a borderline mucinous tumor. Something that could be considered pre-cancerous, and it essentially took over my entire left ovary so there was nothing left to save. It was stage 1A meaning it had not spread beyond the ovary’s surface, and thankfully it had not burst prior or during surgery. The damn thing was 10.5cm!
I was told that I would need follow up scans and CA125 tests every six months for at least the next 5 years because there’s a chance it could come back on the remaining ovary. About three months later I was to do a baseline scan and another CA125. The scan showed a hemorrhagic cyst on the remaining ovary, which is benign and my CA125 was 23.
Another 3 months go by and it’s now January, my CA125 came back at 41. I go in for a scan on the 29th and I’m so worried it will show reoccurrence. I’m not ready to lose this remaining ovary. I like that it functions as it should and adjusts the amount of estrogen I need according to what my body needs and we just don’t have the technology to replicate a functioning ovary. I’m not thrilled about needing to take exogenous testosterone, but at least with one good functioning ovary I still feel half right. I know in a premenopausal person there can be a lot of explanations for a raise in CA125, but given all that’s happened to me I’m so scared. I hate my body for what it’s done to me this past year, and I can’t imagine it doing anything good for me ever again.
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