Author Topic: Indeterminate Intersex Condition  (Read 2228 times)

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Offline fenambo

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Indeterminate Intersex Condition
« on: June 09, 2015, 09:58:08 pm »
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.

Offline Mariah

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Re: Indeterminate Intersex Condition
« Reply #1 on: June 09, 2015, 10:05:51 pm »
Hi Rey, welcome to Susan's. I look forward to seeing you around the forums. I hope you find some answers. At least that will help bring you some peace. Good luck and Hugs
Mariah

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Offline JLT1

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Re: Indeterminate Intersex Condition
« Reply #2 on: June 09, 2015, 10:38:29 pm »
Hi,

There are several intersexed conditions that  can match your description.  More information would help.  How did they determine you had a prostate and how large is it?    Does your body produce testosterone above the female norm?  Do you have an exterior opening approximating a typical woman?  What female parts do you have internally?  Are you open to going to or consulting with a specialist?

With the correct diagnosis, insurance should cover the surgery or at least part of the surgery.

Need more detailed information if possible to help.

Jen
To move forward is to leave behind that which has become dear. It is a call into the wild, into becoming someone currently unknown to us. For most, it is a call too frightening and too challenging to heed. For some, it is a call to be more than we were capable of being, both now and in the future.

Offline fenambo

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Re: Indeterminate Intersex Condition
« Reply #3 on: June 10, 2015, 07:13:42 pm »
Hello, thanks for the reply! They determined I have a prostate because I had a prostate specific antigen test (PSA) and the result was 0.470 and it is small because they did a rectal exam. I am currently on testosterone therapy, so I have no idea if my body produced any "above normal" levels before I started hormone therapy. Yes to the question about the external opening. I have all of the internal female organs. However, I had an ultra sound done last month and my OBGYN said he couldn't see my ovaries. They weren't visible whatsoever and he said he has no idea if they are still there and why they didn't show up. I have been to a genetic counselor and they aren't such what intersex condition I have. I would love to have my insurance cover my surgeries. I have very frequent urination problems due to my prostate, pelvic and side pain, and nearly constant genital pain. It would be so much easier if I had surgery to correct these issues.

Offline JLT1

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Re: Indeterminate Intersex Condition
« Reply #4 on: June 10, 2015, 10:38:13 pm »
I need to do some research on this.  Please describe the pain in greater detail and we really need locations.

Have you talked with your parents?

Suspect immature ovitesties, located where undecended testicles would be. Possibly one ovary and one testicle but both immature.

Have you had a caryotype done?

Hugs

Jen
To move forward is to leave behind that which has become dear. It is a call into the wild, into becoming someone currently unknown to us. For most, it is a call too frightening and too challenging to heed. For some, it is a call to be more than we were capable of being, both now and in the future.

Offline mm

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Re: Indeterminate Intersex Condition
« Reply #5 on: June 11, 2015, 11:52:49 am »
fenambo, have you ever had any indication of having a female type period, bleeding and/or pain in the region that is cyclic?  This would go a long way in determining if you have active ovaries.  You did develop breasts to the point of needing them removed.  You mentioned wanting genital reconstructive surgery so you must have parts that you want changed to be more like a normal man.

Offline fenambo

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Re: Indeterminate Intersex Condition
« Reply #6 on: June 11, 2015, 04:35:26 pm »
The pain is in my entire genital region. I experience pain on in inner thighs, pubic bone, urethra area, vagina (and I barely feel any sexual sensation inside of it. Sometimes I don't feel anything when I am penetrated. Sometimes I feel numbness and sometimes I experience pain and burning.) I used to have extremely excruciating periods because I had huge cysts inside of both ovaries. I have been on testosterone therapy since July 2010 and I haven't had a period since. I also have a long scar from the base of my penis (very large clitoris, way larger than the typical transmale penis. 2 inches soft and over 3 inches fully hard. I can fully penetrate an asshole and a vagina and receive oral sex.) I have asked my parents about it. My mom becomes quiet and immediately changes the subject whenever I talk about my intersex condition or if I ask her about my scar. When I was 9 I asked her about my scar and she said it was "a bathing suit line" even though it was winter! Another early memory I have was when I was urinating standing up. I was probably 5 or 6. My mom was upset and told me to never do it again. My chest was extremely small. I never wore a bra so I am not entirely sure what size they were, but if I were to guess I'd say less than an A. I didn't bind until high school and I really didn't have to because I was so flat chested. I binded because I began to feel self-conscious. I want genital reconstruction surgery because I want to experience pain free sex whenever I penetrate my boyfriend. Also, my urethra area causes me extreme pain and I want that to stop. As I mentioned earlier, I have pain and numbness (it's hard to fully explain without actually experiencing the pain) and I don't want to experience that anymore. I have had a karotype test and they tested 5 cells (I think they should have tested more) and I am XX.

Offline Bunter

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Re: Indeterminate Intersex Condition
« Reply #7 on: September 22, 2015, 10:42:35 am »
I have gotten strange pains like yours when I took progesterone, perhaps because my estrogen was getting low (?). It was like having a leg cramp, but in the nether region.
I had to urinate every half hour and physical exercise and sex would make the crampy feeling unbearable. These cramps are *not* like menstrual cramps. They are just below the surface of the belly, in the urethral area and reach back to the anus. No bladder problem or other condition was found.

I have an underlying inter (not quite inter technically, but medically similar), condition too.


Tags: intersex dsd male prostate