Indeterminate Intersex Condition

[Guest fenambo]

Hello, my name is Rey and I am 24 years old. I identify as male and I have always identified as male. I was diagnosed with an indeterminate intersex condition by my endocrinologist a year ago. My endo isn't sure which intersex condition I have and neither do I. I've done countless hours of research and I haven't came close to finding anything that fits my condition. My karyotype has been tested and it is XX. I have internal female reproductive organs and I have a penis. I have also tested positive with a prostate via a PSA (prostate specific antigen) test. I have been on testosterone for 5 years now and I have had a double mastectomy. I haven't found any information regarding people with intersex conditions that also have a prostate. I am currently trying to get a total hysterectomy and then I am getting genital reconstructive surgery. I am hoping to get them both fully covered under my insurance (Anthem BC BS of IL) but I am not sure if they will or not. I will not technically be getting "gender reassignment surgery" since I do have an intersex condition and all of my legal paper work states male. I am looking for any resources about my indeterminate condition, meeting new people and making friends, and getting my surgeries covered by insurance. Thank you.

[Bulldog1948]

Hey Rey , WElcome to Laura's. Make sure you read the T&C rules, okay.

I see that you have an extememly interesting IS condition. I do have a question and I hope that you are not offeneded, as this is only for medical reasons, ok. Do you have a V. and do you have any type of period? I think I did read somewhere in my travels that all of the info about yourself could be true, but it is very rare. Oh, do you have a prostrate that yor dr can feel and or manipulate.

If you would rather not answer any of my questions I will understand.

Mike

[Charlize]

Welcome to Laura's. Hopefully you will find answers to some of your questions here as you make some friends.

Hugs,

Charlize

[Guest fenambo]

I do have a v. My doctors have given me a rectal prostate exam and they could feel it. I also have a PSA test (prostate specific antigen) test every 3 months to test the levels. I used to have extremely painful periods due to having huge cysts in both ovaries. I have been on testosterone therapy since July 2010 and haven't had a period since. My endocrinologist calls me "the mystery man" because he can't figure out my condition, lol. Thank you Charlize!

[Guest DesiB]

Welcome to the forum, Rey!

You may or may not have realized how many people you could help by sharing your unique experiences, but thank you so much for being willing!

The only time I ever had a digital rectal prostate exam was before I had my vagina (via GCS). Since that surgery (3 & 1/2 years ago) did not include the removal of my prostate, which is now considered my g-spot, I have not been able to get a doctor to do a prostate exam for me. My general practitioner (who was also a gynecologist) during my transition and after GCS kept promising she would do my prostate exam, but then kept making excuses to put it off for an entire year after my surgery until she finally told me to find another doctor. But I even showed her the post op instructions from my surgeon and let her know she could even call to get explicit details, etc. We even drew pictures because I explained that doing my prostate exam post-op would mean it would require going through the vagina rather than the rectum to feel it and also that the PSA would no longer be effective with my changed hormone levels. This is all according the information I received from my GCS surgeon, Dr. Christine McGinn, and as far as I know is consistent with what others are told as well.

So, my first reaction to hearing that a prostate could be felt through a standard digital rectal exam was surprise that it could still be felt through the extra layers of vaginal skin. But I suppose that skin is typically thin. How many here with post-op vaginas have had a prostate exams? Were they performed vaginally or rectally?

[Bulldog1948]

Hey Rey, I hope that you plan on hanging around here. I am sure that other IS and FTMs will be along to join into the conversation.

[Guest fenambo]

Yes, I will be sticking around here. That's so awesome that you've had surgery! I am getting a consultation for a total hysterectomy next month. I am also getting a consultation for GRS in August. I have insurance but I doubt it will cover anything. I have Anthem, but my particular plan doesn't cover anything, including surgeries for intersex conditions. :'( I had no idea that's how you'd perform a prostate exam after having GRS. That's very interesting! In August I will be in mu last semester for my Bachelor's degree in English. My speciality is creative writing. I'd love to write about my experiences or write a fictional piece. I want people like me who feel alone like I do to realize they're not alone. I've never met another person that is going through exactly what I am going through. I want to create a voice and reach out to those individuals who feel like their condition is unknown. They aren't alone because I am here.

[Bulldog1948]

Hi Rey, after reading your above reply, I think that you hhave me confused with Desi. She's had GRS, I have not, because I am male and have no wish to become female.

[Guest fenambo]

Hello. I combined the replies. I should have separated them. I am sorry for the confusion. Next time I will make the replies more distinct.

[Guest DesiB]

Hello. I combined the replies. I should have separated them. I am sorry for the confusion. Next time I will make the replies more distinct.

I understood what you wrote.

[Guest fenambo]

I'm glad that I made sense!