Blind vagina and rudimentary uterus surgical options

[Doreen]

So I honestly have no idea which forum this belongs in, but put it in the intersexed, primarily because its an intersexed surgery I'm asking about ...

First off its not a guarantee that's what I have but my endocrinologist seems to think so.  I had 'GCS' with Dr. Kunaporn back in 2001 to correct somewhat ambiguous genitals that erred on the far too masculine appearance for my liking.  I had problems with puberty, no pubic hair until I started HRT in my early 20's, tall but female bone build, etc.. a natural level of estrogen on the perimenopausal range (kinda like I have one functioning ovary), and no measurable testosterone.  My given diagnosis so far is partial androgen insensitivity, pseudo-hermaphrodatism, and gonadal dysgenesis with mullerian structures intact (with an existing uterus/ovaries).  They've verified on ALL the tests (the only thing they all agree on) that I have no internal male structures like seminal vesicles or prostate or anything like that. 

Fast forward to now, constant cramps in the lower abdominal region for months... so far I've had a Ultrasound, MRI, CT scan, and pelvic cystoscopy.
The Ultrasound & CT scan say everything is 'normal', though the US admitted the ovaries were hard to visualize.
The MRI and cystoscopy said there was nothing there.. though the MRI said it was an fleshy protrubance.

https://imgur.com/a/TEX6o  ultrasound
https://imgur.com/a/0bIIw mri (I put in the notes and the comparison photo above..my pic is below)

SO HERE IS MY QUESTION finally : 
Does anyone know of a physician .. I'm going to assume it'd be along the lines of a SRS surgeon that would be able to attach a blind vagina to an existing uterus?   I'm at this point going with the diagnosis of the endocrinologist that there is one there.  I'm having a follow up with her next month and a geneticist in april (VERY long wait list there).

[AnonyMs]

I've heard of something like this a long time ago. Unfortunately I've never been able to find the post again, I can't remember the details properly, and it may not have been in English either (french maybe), or even true.

It was something along the lines of a cis-women with the birth deformity where her vagina didn't exist, and she went to an SRS surgeon (it may have been Suporn) who was able to fix it and give her the possibility of having children. She was very happy with the result, but the story ended there, and I don't know what happened after that.

I think you'd be best off contacting getting your diagnosis then contacting surgeons and asking them directly.

[Doreen]

I've heard of something like this a long time ago. Unfortunately I've never been able to find the post again, I can't remember the details properly, and it may not have been in English either (french maybe), or even true.

It was something along the lines of a cis-women with the birth deformity where her vagina didn't exist, and she went to an SRS surgeon (it may have been Suporn) who was able to fix it and give her the possibility of having children. She was very happy with the result, but the story ended there, and I don't know what happened after that.

I think you'd be best off contacting getting your diagnosis then contacting surgeons and asking them directly.

Ya getting any doctor to agree on a definitive diagnosis seems to be part of the issue...  But its clear on both the ultrasound & MRI I have *something* there.  And the cramps aren't in my head, they're at a rather specific anatomical location.  I honestly think they started 'in force' when I started bio-identical progesterone.   The irony is in the past it only happened once in a while & I assumed it was constipation so took prunes... and it went away.  I don't think it was because I was constipated though.  Probably TMI, but I remember it (vaguley) happening about once a month this 'problem' I had.   I never had bleeding associated with it... Only bleeding I had was for about 2 years vaginally associated with scar tissue internally.

Its frustrating, noone seems interested enough to help me definitively find out whats going on.   They completely ignore actually LOOKING at the mri's & ultrasounds.. and instead just go off of the final diagnostic readings.  I worked as a nurse for so long I forgot what its sometimes like on the other end.  Now I have to be my own patient advocate and figure things out myself its .. annoying to say the least.   But yes, definitive diagnostics seems to be in short supply.

[Dena]

I am only going to suggest one name because that's the only one I know is capable of doing it. I suspect there are others but but I lack the information needed to recommend them. Dr. Bower is a gynecologist and has worked on CIS females along with GCS. In addition, I know of one case where she undid childhood surgery for a female reassigned to male at a very young age. It will be your decision if you go to  Bowers but Bowers should be on your short list.

[Doreen]

I am only going to suggest one name because that's the only one I know is capable of doing it. I suspect there are others but but I lack the information needed to recommend them. Dr. Bower is a gynecologist and has worked on CIS females along with GCS. In addition, I know of one case where she undid childhood surgery for a female reassigned to male at a very young age. It will be your decision if you go to  Bowers but Bowers should be on your short list.

Thank you Dena, gives me something to begin with if nothing else.  I'll research her out (and other options of course).

[HughE]

If you have a uterus and take progesterone, you'll start to menstruate. If your uterus has no outlet, then it might lead to a build up of menstrual fluid inside it. That might have something to do with your abdominal discomfort. This is just speculation btw, not a definite cause!

Have you been gene tested? That might help provide some answers. It seems unlikely that you'd have both gonadal dysgenesis and partial androgen insensitivity, since they're two conditions with completely separate causes and both quite rare.

If you have a uterus, then with the right hormone treatment to make it grow to full adult size, it may be possible for you to fall pregnant via donor IVF, and give birth.

https://midwifediaries.com/looking-after-the-childbearing-mothers-who-are-genetically-male-swyer-syndrome-and-ais/

[Doreen]

If you have a uterus and take progesterone, you'll start to menstruate. If your uterus has no outlet, then it might lead to a build up of menstrual fluid inside it. That might have something to do with your abdominal discomfort. This is just speculation btw, not a definite cause!

Have you been gene tested? That might help provide some answers. It seems unlikely that you'd have both gonadal dysgenesis and partial androgen insensitivity, since they're two conditions with completely separate causes and both quite rare.

If you have a uterus, then with the right hormone treatment to make it grow to full adult size, it may be possible for you to fall pregnant via donor IVF, and give birth.

https://midwifediaries.com/looking-after-the-childbearing-mothers-who-are-genetically-male-swyer-syndrome-and-ais/

I've had some rudimentary karotyping done, stated XY but here's where it gets tricky. Most of the Y was 'undetermined' protein markers, and the X had hetereozygosity on both ends.  I'm supposed to see a genetist in April (or sooner, sheesh), but the preliminary diagnosis so far is a mix between Swyers and Partial Androgen Insensitivity.  I also found that most of the AR genes are missing on my X chromosome, but that may have just been a fault of the testing system they used too.  I'm having it retested since I pointed out the errors to their technicians.