just got recent intersex confirmation

[kristan]

I'm 38 years old, and I just recently got my Mothers confirmation I am intersexed. It answered a lot of questions regarding the scars. I had believed myself to be a mtf transsexual since the age of 14. My concern right now is trying to figure out to what extent my degree of intersex is. I'm due to get federal medicaid in July of 2010. That is when I will be able to go see a doctor. I was hoping I could get some information from someone here who may be able to shed some light on this for me.

I have two 'puncture' scars on the inside of my upper thighs/pelvic area, two up/down 2 inch scars just above the puncture scars. A horizontal scar just above the pubic hair zone on my right side. The bottom of my scrotum has a large scar tissue area that is numb in some areas, that scar reaches to the anus, but thinner. There is a very tight or taut scar just below my urethral opening extending one to one and a half inches down the bottom side of my 'penis'.

I am not relying on this forum to Dx me, I am just looking for any relevant information from the users here that may help me sort all this out emotionally.

I appreciate any help.

Thanks,

Kristan

[spacegirl]

Welcome Kristan, though I wasn't here for much before you. I imagine this place like a campfire at a mostly empty camp in the wilderness. You know that someone was here.

It's good that you're getting some help soon. On the news they've been promising medical insurance for all, and medical privacy for none, whether we want things that exact way or not. So maybe it won't matter soon whether it's medicaid you have or something else.

Scars are a pretty good sign that something's been going on. Numb spots too. Sometimes it's not so easy telling what the something was. Sounds like your mother knows more. I wonder how usual scars on the intersexed are? 10 percent, 90 percent, in between?

[Laura Robison]

Hi Kristin,

I am dealing with a situation similar to yours. My Mother confirmed that I am intersexed about a couple of months ago. I had scars under my "penis" and my scrotum also. Now with a lot of my questions answered, my life makes a lot more sense. I have tried to ask my Mother more questions because I would like to know if I had more than one surgery etc., but she doesn't want to talk about it any more. I am 62, and had always thought of myself as a MtF transsexual since I first read about it back in the 70's. Now I realize I was not transsexual but intersex. This has not been an easy time for me, but It has gotten better.

How are you dealing with this revelation? I guess everyone who finds out later in life handles it differently. For me it was like I was forced to re-define myself. Things I thought I knew about myself were turned upside down. So much evidence for my being intersexed was there, but I just didn't see it, and I hadn't even heard of intersex until earlier this year, so I didn't have any context for the parts of my life that didn't fit a normal pattern. Does any of that sound familiar to you?

I just wanted to share a little of my story with you. I know it helps me when I read the stories of others who have had similar experiences to me.

Welcome to the forum, :sign16:
Laura

[spacegirl]

Did they even have infant genital surgeries back in 1947?

[Dianne]

Did they even have infant genital surgeries back in 1947?

Oh yes, they certainly did -- pretty crude by today's standard but snip and stitch just the same.

Kristan, tell us about some of your other "physiological differences". Describe your phenotype as a child, what happened at puberty, and any tests you had then. Maybe we can make some speculations with more details.

[Laura Robison]

Did they even have infant genital surgeries back in 1947?

Yes, and I've been told that back then they sometimes didn't even consult the parents or give them any information about what they had done. They might have said something like "we found a minor problem but we fixed it, and there's nothing to worry about". People didn't question doctors back then.

[spacegirl]

If they could do those things in 1947, their technique was probably much more advanced in 1971.

Kristan, if the numb area forms a line from back to front, if might be the place where the remnants of your labia fused. An episiotomy might reveal you a vagina. I was told once that the ones made by nature are almost impossible to close up inside, the best (or worst) they can do is seal the entrance.

[Kailana]

the simplest and no means the only explanation would be penile hypospadis. likely the urinary opening at birth was likely not completely formed at the end of your phallus but underneath the shaft.

I am not sure of the scar on the right side above the pubic area, could either be the sight for a Laparoscopy examination. ie a cut to place a scope inside to look around to see what is inside. or could be hernia repair.

if there is actualy scarring from the base of the scrotum over the perineum then likely the hypospadis which was present on the shaft of the penis/phalus was also likely open underneath.

basically the labial/scrotal folds did not close on their own. if the terminology is confusing labial folds are for girls, scrotal folds for boys ie in girls usually they remain open, in boys they close on thier own. Sometimes they do neither and end up looking like something inbetween.

and as for conditions too many possibilities to say.

the two puncture like wounds with scars could be from either drain tubes and where they went in looking for undescended testes. Which is likely whatthey are from. Hard to really say though cause they could of been caused by other surgical operations. again could be exploratory examination with a scope, and or the place where they went in to pull undescended testes down. just a possibility.

[kristan]

When I look back now, all the signs were there, and so many things are making sense as I piece the puzzle together. My initial psychological response was "I WANT MY VAGINA BACK!" You all hit on the two possibilities I've surmised so far: 'fused labial folds' and 'hypospadis'. My "knowledge of self" lends me to believe it may be a combination of the two.

My wife is also intersexed, something I knew about her, but we discovered my condition together 6 months after we got married. I've been rediscovering my sexuality and gender roles with my wife, whom is my greatest supporter. Growing up for me was very difficult in the gender roles usually assigned. Puberty just flat out sucked. The changes in my body led me to believe the transsexual outcome. I had a conversation with my Mom in my early twenties where I broke down crying saying to her "there's a girl inside me". Her response was "I know". I thought that was her accepting me as Trans. I know now that I misunderstood her.

I don't see this as redefining myself, but rather discovering the beauties of being intersexed. I am living fulltime as a woman since May, a month before the confirmation, and just started MTF HRT. My wife and I live as a lesbian couple.

Thanks somuch,
Smooches,

Kristan

[Laura Robison]

When I look back now, all the signs were there, and so many things are making sense as I piece the puzzle together. My initial psychological response was "I WANT MY VAGINA BACK!"

Wow, Kristan, you said it for me too. "I WANT MY VAGINA BACK!" I feel so robbed and mutilated.

You all hit on the two possibilities I've surmised so far: 'fused labial folds' and 'hypospadis'. My "knowledge of self" lends me to believe it may be a combination of the two.

Yep, me too. It could be like Spacegirl said that you may still have your vagina under the scars, and an episiotomy might reveal it. My SRS surgeon found what was left of my vagina, but did not preserve it, but went ahead with a skin graft from my thigh to create what I have now.

I am so happy for you that you have such wonderful support from your wife, and the impact of finding out you are intersexed was a good one for you. I guess the impact on me was similar to what it would be like to find out at this time in my life that I had been adopted.

I hope you can get a good diagnosis when you go to see a doctor next year. Kailana can give you some good advice about going to doctors.

Hugs,
Laura

[The Female Eunuch]

Hello Kristan,

welcome to Bodies Like Ours

I have two 'puncture' scars on the inside of my upper thighs/pelvic area, two up/down 2 inch scars just above the puncture scars.

I can't quite follow this, because I would have thought of 'upper thighs' and 'pelvic area' as two different areas.

A horizontal scar just above the pubic hair zone on my right side.

do/did you have a right testicle in your scrotum? The reason I ask is because the location of this scar sounds like where it would be to remove an ovary or undescended testicle.



The bottom of my scrotum has a large scar tissue area that is numb in some areas, that scar reaches to the anus, but thinner. There is a very tight or taut scar just below my urethral opening extending one to one and a half inches down the bottom side of my 'penis'.

I think the thin bit that goes to your anus is natural, but the rest sounds like scar tissue from hypospadias repair surgery.

cheers,
Caroline

[Aseras]

The bottom of my scrotum has a large scar tissue area that is numb in some areas, that scar reaches to the anus, but thinner. There is a very tight or taut scar just below my urethral opening extending one to one and a half inches down the bottom side of my 'penis'.

Similar to me. My scars though are very faint now and the skin is very thin. I can only see them if I really look. They patched me up and did a circumcision to tidy it all up. I would guess they did a "good" job. Still hurts to pee, always has somewhat.

My mom to this day still holds back info from me. Every so often a new piece of something comes out. I just don't care anymore about the past. Look to the future decide what you want and go from there. Good luck.

[spacegirl]

Wow, Kristan, you said it for me too. "I WANT MY VAGINA BACK!" I feel so robbed and mutilated.

Yep, me too. It could be like Spacegirl said that you may still have your vagina under the scars, and an episiotomy might reveal it. My SRS surgeon found what was left of my vagina, but did not preserve it, but went ahead with a skin graft from my thigh to create what I have now.



Even if they hadn't insisted on covering it with thigh skin, they would have needed to do something to keep it from closing up again. I've had several episiotomies which opened up mine, but without that being followed up with something to keep it open, things heal closed again fast. Then the doctors would say cold things about "out of sight, out of mind". Out of their minds.

But I never thought anyone robbed me of it. I knew it was there, sensation told me. But they robbed me of it's benefits, the chance to ever have a child.

[Laura Robison]

I've had several episiotomies which opened up mine, but without that being followed up with something to keep it open, things heal closed again fast. Then the doctors would say cold things about "out of sight, out of mind". Out of their minds.

I wonder how doctors can be so cold and insensitive.

[Aseras]

I wonder how doctors can be so cold and insensitive.

I'm almost certain it's part of medical school these days.

[kristan]

Thanks so much for all the info so far


do/did you have a right testicle in your scrotum? The reason I ask is because the location of this scar sounds like where it would be to remove an ovary or undescended testicle.


I do have both testicles, but am unaware of whether or not they naturally descended, or were surgically descended, and/or a removal of an ovary(ies) removed.

I can't quite follow this, because I would have thought of 'upper thighs' and 'pelvic area' as two different areas.


the scar is just on the pelvic side of the crease area where my upper thigh and pelvic area merge.


Yep, me too. It could be like Spacegirl said that you may still have your vagina under the scars, and an episiotomy might reveal it. My SRS surgeon found what was left of my vagina, but did not preserve it, but went ahead with a skin graft from my thigh to create what I have now.



I remember very vividly the day I "found" my vagina and was able to (with the help of my wife) identify the feelings and sensations associated with it being there. I plan on having SRS if the funds are ever available, and I have been wondering if it were possible to work with what may be left of my vagina, or like you said in your case, the graft. It had worried me somewhat wondering if SRS would even be possible, so thank you for that info. I would love to have the episiotimy done to see to what extent my vagina is still there......but alas.......stupid Finances! Once I can see a Doctor I'll explore these options with them.

Kristan, if the numb area forms a line from back to front, if might be the place where the remnants of your labia fused. An episiotomy might reveal you a vagina. I was told once that the ones made by nature are almost impossible to close up inside, the best (or worst) they can do is seal the entrance.

basically the labial/scrotal folds did not close on their own. if the terminology is confusing labial folds are for girls, scrotal folds for boys ie in girls usually they remain open, in boys they close on thier own. Sometimes they do neither and end up looking like something inbetween.


I may be wrong about this, maybe you all can help. I have been told that my scrotal sack is much larger than usual, and I remember reading about how undescended testicles in a case like mine may have been surgically descended and parts of the labial fold used to enclose them. The numb/scar area on the underside of the scrotum has never had hair, and is very smooth for scar tissue.

Thanks,

Kristan

[Laura Robison]

I plan on having SRS if the funds are ever available, and I have been wondering if it were possible to work with what may be left of my vagina, or like you said in your case, the graft. It had worried me somewhat wondering if SRS would even be possible, so thank you for that info. I would love to have the episiotimy done to see to what extent my vagina is still there......but alas.......stupid Finances! Once I can see a Doctor I'll explore these options with them.

Yes, do explore those options with your doctor. If there is enough of your vagina there, the doctors may be able to keep it open and you can begin on a dilation regimen to increase it to a normal depth. I wish I knew then what I know now. I would have definitely explored those options with my doctor.

Normally doctors don't need to use a skin graft for SRS. They use what is called a penile inversion technique. In my case, my genitals were too small, and that technique couldn't be used on me. The doctor had to use skin from the back of my thigh to make up the difference. It was called a half thickness graft. The surgeon sure made a big scar on the back of my left thigh. I just measured, and it's 4.5" x 8" or 11.5cm x 20cm. The long dimension is horizontal when I'm standing.