I finally found medical help for my intersex condition

I’ll start with the diagnosis first.  I had a pelvic ultrasound done and I have a vaginal canal! The ultrasound technician also thinks that I might have a uterus and a cervix, but because of my weight, I have to have an MRI done to be sure.  I’m now waiting for my insurance to pre-approve the MRI, then I’ll be able to know for sure what exactly I have inside of me.

I’m detailing what led up to this.  I’ve already mentioned some of this on this blog, but I’m including it all below.  I’m doing this partially to detail everything in one post. However, I’m mostly doing this because I’m super excited about my result, and when I began writing my experience I just couldn’t stop.

The main reason I tried so hard recently to find a doctor that could help me and get my test done is that I bled more than I ever have before in October.  I woke up in the middle of the night thinking that I wet the bed, but instead my sheets were covered in blood.  My bleeding had never before been that heavy. It was really heavy the first day, then gradually got less and less until I stopped bleeding on the fifth day.  I bled again in December, but it was my usual spotty bleeding for five days.

When I first started taking hormones in late 2006 and in early 2007, I started bleeding from my penis every month. Starting at about mid-to-late 2007, my bleeding became unpredictable. I’d get PMS symptoms every month for a few days (bloating, cramping, migraines, and wild mood swings), but I’d only bleed every two to six months, give or take.

I’ve actually been getting the PMS symptoms every month since I was 12. My penis is the size of my pinkie nail (my mom told me that, since I was never circumcised, she and my grandma had a hard time even finding my penis to clean when I was a baby), and my testicles and scrotum are tiny. I was diagnosed as having hypogonadism and a microphallus when I was 12 or so by the school nurse when students were checked to see how puberty was coming along. However, the school never set up an appointment with a doctor to determine why they were so small, nor did they ever contact my parents. My mom thinks that they were just checking the boxes to meet state guidelines and didn’t really have the student’s interests in mind. I hadn’t thought about that previously, but I’m pretty sure she’s right about that.

My voice also never changed. Well, it did, but it went from sounding like my sister to sounding like my mom, rather than getting deeper. I had to develop a fake deep-ish voice, based on my dad, who luckily had a high-pitched voice for a man. When I was 15, I started getting female curves, so I gained 150 pounds to hide it. I was getting beat up regularly, was set on fire at a school bonfire, had my hair set on fire and was spat on in the bus, and was sexually assaulted at a neighbor’s house when I was 8, all because I acted like a girl. So, I was afraid that I’d be beaten even worse, raped, and/or killed if the boys in school saw I looked like a girl too.

On top of faking a male voice, I made a conscious effort not to make girlish arm gestures. I also began walking on the sides of my feet to stop walking like a girl. The latter is still a problem for me, as I did it for 15 years or so, so it’s a hard habit to break. I became the class clown and acted really stupidly on purpose so that if I acted like a girl accidentally at times, people would hopefully chalk that up to me acting dumb regularly anyway. That made me few friends, and I was often called mentally handicapped by kids in school. I was also diagnosed with high-functioning autism when I was 13, so it was hard for me in social situations anyway. Well, except when interacting with the girls. I sometimes let my guard down, like when I ate at the girl’s table at lunch or when I was assigned to a group comprised of only girls for a school project. I probably also let my real voice slip at times, but, even though none of those girls were close friends, they never were mean to me. The majority of the boys in school were a different story. However, there were a few that never harassed me, and two or three who were even friendly to me, sometimes even outside of school.

I have never had much body hair. I have none on my legs, underarms, chest, stomach, back, etc., and very little on my arms. I only started growing a very light beard and mustache when I was 20, due to the huge stress put on me after my dad died. After that, I sometimes grew out my mustache and/or my beard. I didn’t like myself for doing so, but I felt I had to for self-preservation.

When I didn’t have a beard or mustache, I looked female so much that those artificial intelligence programs that determine the gender of a face by its features would always state my face was female. When I was on a trip with my family to North Carolina when I was 15, right before I started developing female curves and putting on weight to hide them, I was still very confused about why I looked and acted so femininely. I decided to see how strangers perceived me, so I went into a women’s public bathroom with short hair, a blue Outer Banks T-shirt, and a matching pair of boy’s swimming shorts. Despite having short hair and wearing boy’s clothing, no one batted an eye at me being in there.

After my dad died in 2000, I began living as a woman part-time, even going so far as going to various stores dressed as a woman. I’d use my natural voice and felt more like myself than I had before I started faking my personality and mannerisms for self-preservation. However, some years I would have my mustache and beard, so when that was the case I’d wear some of the few pieces of women’s clothes I owned, but never left the house. A few years before I started living as a woman full-time, I hosted a gaming convention. Because people had commented that my picture, sans beard and mustache, looked like a girl when I posted it online, I grew my mustache out. Because my beard took longer to grow since it was so patchy, I also shaved my head. I hated how I looked, and never went that far again. Luckily though, the convention went off without a hitch, and I hosted conventions a few more times in the upcoming years.

I stopped growing a beard and mustache completely in 2006, and towards the end of that year, I purchased estrogen and a testosterone blocker online. I let my sister and mom know that I intended to live full-time as a woman in 2007 on the 7th of July. I remember that well, as it is 7/7/7 and those are known as lucky numbers. The vast majority of my friends and family were at least civil to me, and most were actually supportive. So, I do consider myself very lucky since I know several transgender women that weren’t so lucky.

In 2007, after I started bleeding, I went to the emergency room.  The doctor was extremely rude to me. He mocked me for saying that I had period symptoms and told me it was not possible for me to have a period. He also berated me for being transgender, saying I lived an unusual life and calling me the male pronouns he, him, and his.  He asked inappropriate questions like why I thought I was a woman. He never did any tests, assuming that my bleeding was because of the hormones I was taking and marked that I said I had a “period” in quotes on the side margins, outside of the various fields on the paperwork. There was no reason for him to do so, as doing it in large letters outside of official boundaries just brought attention to his derision of my condition.

I was so humiliated after that so I decided I needed to obtain and see a general practitioner. I applied for and was accepted for Medicaid. I got a general practitioner, who then transferred me over to another general practitioner in the same building who had experience with transgender patients.  He was kind to me in regards to being transgender, and officially prescribed me hormones. They were Spironolactone as a testosterone blocker and Premarin, pregnant mare hormones, for estrone, which he prescribed so that I wouldn’t be taking the hormones that I purchased online.

However, he was dismissive of my comments about bleeding, never ordering a test, and making an assumption that it was due to infection because I wasn’t circumcised.  He ignored the fact that my bleeding happened every few months for five days and then stopped before the cycle was repeated a few months later. He also ignored the fact that my penis was tiny and I never had an erection or ejaculated, saying that it didn’t matter because I was transitioning to female anyway.

During this time, I also was experiencing confusion and memory problems, so I went to get an MRI done on my brain.  They found an adenoma on my pituitary gland measuring about 1 centimeter. I was prescribed medicine to reduce it, which it did, to about 1 or 2 millimeters. I was never told whether this pituitary cyst affected my hormone levels.

My doctor then moved to Canada and I got a new doctor. This one was annoying because he blamed everything, no matter what it was, on the fact that I was overweight.  The only good thing that happened during the time that he was my doctor was that I was referred to a gastroenterologist that performed gastric sleeve surgery on me which caused me to lose over 100 pounds.

A few years later, Medicaid rules were changed in my state so that that the state didn’t cover the costs anymore. It went through health insurance corporations instead, and I was told that I had to pick between Excellus and Fidelis. Because of this change, my health provider no longer took Medicaid and I had to go to a new doctor.

This doctor continued my prescriptions for Spironolactone and Premarin, however, for some reason, he cut the amount of the latter in half.  He also didn’t properly keep track of my hormone levels, so I never knew whether or not my hormones were at the correct level.

I tried again to get help for my period-like symptoms, so my doctor referred me to an endocrinologist. After she saw me the first time, she diagnosed me with polycystic ovary syndrome. I was hopeful this meant that I had a female reproductive system, but it turned out that she didn’t read the part of my patient information that stated I was transgender. Once I told her that I was transgender, she had me leave her office and I never saw her again since she didn’t accept transgender patients.

I then was referred to a large hospital two hours from where I live.  They needed proof that a psychologist or psychiatrist was treating me for gender dysphoria.  However, they wouldn’t accept my psychologist or psychiatrist and wanted me to see one of their own psychiatrists. If I did this, my insurance wouldn’t let me continue with the group program I attended. The group program was the best thing that ever happened to me, helping me with my anxiety and depression as well as my socialization skills which I had difficulty with due partly due to my autism but mostly due to my post-traumatic stress syndrome related to my childhood verbal, physical, and sexual abuse and some verbal abuse I suffered in adulthood.

Last year, my doctor said that he was no longer comfortable giving me hormones and the testosterone blocker.  My best friend, who is a transgender female, told me that she received her hormones from Planned Parenthood.

Shortly after that, I bled more than I ever had, as I mentioned above. However, because of the COVID-19 pandemic, most doctors weren’t accepting new patients and I wasn’t comfortable going to a new doctor anyway.

However, I was fully vaccinated at the end of March, so I decided that I would see if I could find a doctor in my area that would prescribe and monitor my hormones, as well as help me to find out what I had inside of me and why I was experiencing symptoms consistent with menstruation symptoms.

My mom told me to see online if anyone were comfortable treating intersex patients.  Planned Parenthood showed up, which seemed like serendipity since my friend had recommended them.

Planned Parenthood was great as the registered nurse told me she would talk to the program supervisor to help find me a specialist that would help me with my intersex issues.  I received a list of specialists from Planned Parenthood in the mail.  Most were in bigger cities two miles or more away.  However, there was one in a liberal town about 45 minutes away from me.

I went to the specialist in May. He was really thorough and wanted to know my history from birth right up to the present. I had a bunch of blood work done. They also planned to have me go back to get a pelvic CT scan done when it was pre-authorized by my insurance. Some of the blood work came back the same day and the doctor wrote that my testosterone level is “very low” and “unexpected”. I was hopeful at that as I took it to mean that he would be able to find something. I also had a chromosome test which I anticipated as it should be interesting to see how that one comes back.

My insurance wouldn’t approve of a CT scan without having an ultrasound done first, so I was scheduled for a pelvic ultrasound in early June. When I had the ultrasound done, the technician told me I have a vaginal canal. She thinks I have a uterus and a cervix, but because of my weight, she wasn’t sure.

After the doctor saw the results, he said he wants an MRU done. I also have to get bloodwork done to do the chromosome test again as that one didn’t get tested for some reason. Once my insurance pre-authorizes the MRI, I’ll get the bloodwork done on the same day.

Those will tell for sure what I’ve got inside of me. I’m super happy about the vaginal canal though, as that will make my surgery a corrective surgery instead of a sexual reassignment surgery. I’ve been praying to God to make me female and wishing that I was born a girl since I was 5.  37 years later, my prayers finally came true!

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