Re: Re: for RSS adults - Claire

[Guest guest]

Hi Claire

My name is and I am 's mom. is 5. She was first

diagnosed by a geneticist with RSS at 3 3/4, however at 5 Dr. H says no.

Anyway, has a condition called labia adhesions. Is this anything that is

discussed, brought up or slightly touch on in your MRKH support group? It is

somewhat common. What it is, is that the labia actually sticks together and

closes. Twice we used an estrogen cream and it worked to open it. However, we

were scolded by Dr. H for using it. So now, every night I put Vaseline on the

small (probably 5-10%) adhesion. I would just like to know if you have heard of

this ont eh other site and if so, how did other people resolve their adhesions.

I have read surgery but the adhesion can come back. I have also read that upon

puberty, the adhesions will stop.

Thank you for any information or insight you may have and thank you for such an

informative post.

B

5 and Kelli 2 1/2

yodo1974 wrote:

Hi -

I wanted to mention that my condition, Mayer-Rokitansky-Kuster-Hauser

(MRKH) syndrome is not as uncommon as I thought. It is a congenital

absense of the uterus and vagina. The online support group that I

joined has about 622 women who have joined since 2000 I believe. It

occurs in 1 in ever 5000 women and it could be any woman. I don't

think it's a disorder that is specifically related to RSS, but I'm not

sure. You can look MRKH online and read up about it. MRKH is not

talked about so much because it is such a sensitive topic and there are

so many psychological and emotional issues related to it. It is

something that is hidden unlike RSS...I can't hide the fact that I'm

short but no one would know that I don't have a uterus and a very, very

tiny vagina. I hope this isn't too much information, but we can't

learn about these things if we don't talk about them you know?

I could do surrogate parenting but I'd rather adopt...there are plenty

of children in the world who have been orphaned or abandoned and need

someone like me to take care of them. I must say for myself, finding

the support groups for both RSS adults and MRKH have been so liberating

for me. I feel so empowered. I hope this helps.

Claire

>

> Hi Guys,

>

> Just remembering a thread recently about gynecological issues with

RSS

> women. Do any of you have or know of other RSS women who have had

> children?? Do you know if there is an increased incidence of RSS

> children born to RSS adults?

>

> Thank you,

>

>

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