My family kept it a secret that I was born intersex. Seeking answer about: Vaginal Atresia, Congenital Adrenal Hyperplasia, Addison's Disease, AIS, and/or females born or living with high testosterone
When I was around 21, my mom told me that I was born with a closed vagina. The way I found out was by her asking me (after a few drinks), "Are you gay because it hurts to have sex with men?" Obviously a dumb questions, but regardless, I understand her train of thought and I'm happy that she told me and to know this about myself.
But it felt weird that she kept it a secret from me for so long, so I looked into it and found that it's called Vaginal Atresia and falls along the intersex spectrum. What I am curious about, but not sure if it's related, is I have had a pain in my upper abdomen for as long as I can remember, and always assumed it was from anxiety. But since looking more into being intersex, I've been learning a lot about adrenal gland disorders and that me being born with a closed vagina could have been a result of hormonal imbalances, specifically high testosterone.
I already know from past experiences with birth control and from being diagnosed with PMDD, that my hormones are out of whack. I reached out to my doctor when my extreme mood swings, irritability, severe pre-menstrual acne, and fatigue prior to my period were starting to interfere with my life.
My mom has recently been more open to answering questions, but I am seeking answers from you lovely people, that could potentially explain some things about me and my health. I would also love to hear similar experiences!
PERSONAL & FAMILY HISTORY
- AFAB (assigned female at birth)
- As far as I know, my chromosomes are XX
- Behavioral problems as a child, aggression
- Body hair at a young age
- I have multiple sclerosis (autoimmune)
- Chronic fatigue
- Depression, anxiety, and PMDD
- Very, very light, short, but regular menstrual cycle
- I identify as non-binary/transmasc (and have always questioned my gender)
- Mom has PMDD and is having a hard time with menopause
- Dad is type 1 Diabetic
My mom also told me that to treat my closed vagina when I was an infant, I was prescribed topical progesterone and it began to open on it's own.
MEDICATION
I am on a handful of medications and some of them don't seem to be working and are rather addictive. When I met with my doctor to talk about my PMDD, I was given Klonopin, rather than looking into hormone imbalances and when I brought up fatigue, they prescribed me Adderall. Not to mention, I am on 300mg of Wellbutrin and 20mg of Lexapro.
I am get an infusion treatment called Rituximab for my MS. Neurologists had an extremely hard and lengthy time to get to this diagnosis, and even then, they say I am on the "MS spectrum."
*** I am digging into this to see if my issues could be better managed and treated by hormone treatment or steroids rather than some of these addictive drugs I am taking, specially Adderall and Klonopin. **\*
CONCLUSION
I'm curious if my stomach pain could stem from my adrenal glands being damaged? Or maybe from producing too much testosterone?
Could it possible I have Congenital Adrenal hyperplasia or Addison's Disease? Or Maybe Androgen Insufficient Syndrome?
*** I scheduled an appointment next month to get blood work done to check my hormone levels as well as have a chromosome analysis and genetic test. ***
Ultimately, I am looking for solutions to live a higher quality of life, especially since I already have MS.
Thanks for reading and any comments to come :)
\Let me know if you want links to information I've found**
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