Women with MRKH Syndrome

I Just wanted to know,...

does anyone in this group just feels like this is a sign.
that you were not supposed to have kids.

I know that this is a bad thing to have on yourself, that you would want to have
the choice to have kids or not.
but have you ever wondered that you were not supposed to have them?

For me, Ive always said I never wanted kids. I love them to death.. just never wanted to have any, just because of life experiences. and then I found that I had MRKH.

everyone thinks I might change my mind about it down road in life. ??
anyone else feels the same or different...

Hello!
I just found out the name for my issues and I am SO thankful for this community. It is so nice to know that I am not alone anymore! After nearly 10 years I have a name and am not alone. Thank you for having this community in the first place!

Hi again
Question
Most of you all ask for more info - what kind of info are you looking for?
I'm no expert but since finding out that my condition actually has a name, I've gathered quite a library - down to the chromosomes responsible!! I asked my doc for a report of e'thing he has on me, and was shocked. Not only was there no mention of "MRKH", but no other synonym for it either. Not even the word "agenisis". Apparently (read online), only about 2 pages worth is dedicated to this condition throughout their studies -No Excuse in my mind, but that explains a bit I guess.
So if I can help, ask away
N

Hi everyone

I'm new here. Thought I'd use a letter I wrote to my parents, in April, as my introduction.  I started a "Letter Journal" a few months ago in which I write to people, without actually giving them the letters. Sounds silly - maybe I will someday...
My story begins in South Africa, where I was born 33yrs ago. I've known about my condition from a very young age. I basically grew up knowing. But I found out I have MRKH Syndrome in MARCH 2009! I dont remember how many times I've walked out doctors' rooms, even a fertility specialist's, armed with the knowledge of what I didn't have and couldn't ever have, but in March of this year GOOGLE of all things, gave "it" a name, along with all the answers to my many questions.

Anyway, here goes:

Today was an ok day.
Sat and Sun weren’t.
I’m stronger than I realise but not as strong as you think and believe I am. I feel like I’m in quicksand sometimes and even if I don’t move around (think too much) I still feel myself slipping down.
You could try to imagine what it must be like, but until you’ve been there…
I don’t begrudge anyone; I’m not envious or jealous –I cant explain really. Its like a feeling of sadness over something I’ve lost, which I never really had even; that I never really got the chance to deal with or process properly –partly cos I never really knew what IT was, or understood ... until now that is. And partly, more importantly, no one helped me. I was all alone.
I didn’t really want to talk about it for obvious reasons, but did no one realise or care enough to foresee the problem that would create??
But, as with e’thing, issue or problem ever to cross our paths, it was subconsciously (I’m assuming) decided that if we don’t talk about, confront and/or try fix things, it would go away. And that goes for e’thing our family has ever had anything to do with. Anything that may cause ripples, waves or tension and arguments, must be avoided.
Avoid confrontation at all costs. Whatever the cost.
So… I was left to deal with this unimaginable weight of a burden that I did nothing to deserve, but was punished with anyway.
So I grew up and became one of the strongest people I know, mastering the art of secrecy with an uncanny ability to recognise some not so good traits in others.
I’m very opinionated, always believing I’m right; I fight for the underdog, want to be everyones hero or saviour; I stick my nose in where it usually doesn’t belong and get involved in things that don’t concern me etc etc     -Maybe trying to make up for all the times others should have been doing the exact same thing for me- who knows!?
In my teens I walked out of a doctors rooms one day armed with the knowledge that I’d never carry a child, some thing or other didn’t develop  fully, there nothing anyone can do for me, and oh, here’s a dilator.
The facts are the facts, I get that. But I didn’t understand anything. I have no words right now for that doctor! But why did you guys not want more info/explanations?If I came to you today and asked you to explain to me what was wrong with me, would you be able to? I doubt it.
WHY AREN’T YOU ABLE TO THOUGH?

 I have MRKH Syndrome. I’m like 1 girl in every 5000. I’m one of the fortunate ones though –I don’t have hearing, kidney, heart or skeletal problems. I have 2 ovaries, but a very small uterus. There is unfortunately no light at the end of that tunnel! And I go thru the “that-time-of-the-month” mood swings regularly - this is my quicksand.

I look and feel normal most days. But I know I’m not. I know things cant get any worse but if I had to be honest and realistic, they never get any better either.
I know I'm not alone anymore at least. And like many of you have said, I could've written most of what I've read here, myself.
I’m so glad I found this site.

 

Hi everyone!!

    I found this site just a month ago, but I am still very exited about it.I was 14 years old (now 19) when I found out I have MRKH.I was shocked and totally confused.Just as you wrote,I didn´t feel normal and the biggest problem was and still is that I can´t have my own children.I was very shy,never talk about my problems and feeling and my dreams just disappear.I´m still not able to tell anybody about my diagnosis.

I´m not satisfied with my doctor, he always force me to do the operation but I dont want to.Right now I´m starting with the dilation and I would like to ask for some help.Please tell me more about it,how long will it last,your feelings,everything you can,I would be very grateful.I´m scared that I would have to go to the operation,If the dilation won´t work for me.I´m doing "it" for about 4months and see only little progress.

Please write some more,I will need some help:)))

thanks
  

Hey all..
I know that no one's updated in a long time, but I was wondering if anyone lived on the west coast. I need to know a really good doctor that isn't too far from where I live. I've known about having MRKH for a year and a half, which is not very long, but I think I've held it in for too long now.. So if there's anyone that I can talk to just to vent or get information or whatnot, that would be great :)

Thanks..
Christine

I see we have quite a few newbs...heheh, welcome all. The more the merrier! I thought I'd just briefly update/ maybe talk about some issues that I know the young girls just diagnosed with this might want to hear.

I'm starting up dialation again, and honestly this time is much easier, emotionally. The first time 'round I just started it to get it "taken care of", but it was really more than I bargained for. I started almost immediately after being diagnosed, so I was probably 16 or 17. A lot of the denial feelings were still there, and not to mention this whole ordeal made me fear sex even more, so facing something head on day after day that A) you don't really want to believe is happening and B) you're scared shitless of, makes succeeding though dialation almost impossible. I didn't even get through half of the set of dialators before I quit.

Now, 5 years later (holy crap has it really been that long?)many therapy sessions behind, and some antidepressants for good measure, I think I have inched along in my recovery. And you all know that it truely is a recovery. We have all been traumatized by our diagnoses.

I personally feel that I feared my own sexuality because of the diagnosis. I still am not ready to have sex per say, but I think that I'm comfortable enough with my sexuality now to see the prospect of sex in my future.

And I think that because I now see the dialation process as something that is being done as a means to an end, instead of just trying to fix myself, I can take the dialation easier, and the daily reminder is not as scary and mean as it once was.

So I think my point for the newcommers is that if you want to do some sort of procedure, wether it be dialation, or surgery, ask yourself why you want to do it. And be honest with yourself. Do you want to do it to make yourself feel more "normal"? Do you want to do it to "fix" the problem? Because if either of those are the basis for the procedure, wait. Fix yourself emotionally first. Heal. Come to terms with it first. Then when you feel that you want to fix physical deformity, you'll realize it's just that, your vagina. Not your person. And the only reason to have one is for sex. So don't think having any procedure is gonna make you feel better, because it doesn't. Only you can do that.

Lots of love,
Angela

And if you have any questions, feel free to ask. we're all here for each other.

 I just found out I have MRKH yesterday. I'm still trying to comprehend it, so if any one can help me, that would be greatly appreciated.

Hello all!  I am so excited that there are other people out there like me that I can talk to!  I knew there were others but people don't talk about it and so if I have ever met someone with the same condition I never knew about it.  Well I am new here and look forward to talking with people who can relate to what i am going through.  I have known I had MRKH for about 7 years now.  It was VERY difficult mentally to deal with it when I first learned I had the disorder.  But I couldn't have made it through without family and friend's support.  I have lots of questions!!  Look forward to chatting with some of you!  :-)

Description of fofum.

This forum is a online support group forum for MRKH women and their partners/parents also. MRKH can be a very hard syndrome to deal with, we hope this site will be a great source of information and emotional support and great support in general to help you cope with MRKH. Currently not many resources are available online for this so we felt very strongly a site like this was needed. You will need to register to see the majority of topics, you will need to register to view these topics as discussing some MRKH topics can be viewed as sensitive and for confidentiality purpose also as I know MRKH women like to discuss most things to do with it privately and not so publicly. So if you are a MRKH women or a partner/ parents who knows a MRKH women,

get registered now!  

The URL for it is as follows:

http://z6.invisionfree.com/All_about_MRKH/index.php