MRKH/Rokitansky syndrome

[grizabela]

Hi Amy, and welcome to the garden. I'm fairly new here myself, and everyone has been so friendly.

Have heard of your syndrome before, but have never encountered anyone with it. I don't know how old you are, but I'm guessing you're fairly young if you have just found out about it. It doesn't make you any less a woman. There are millions of women who have had hysterectomies, and I would challenge anyone who questioned their womanhood.

I can certainly understand your feelings of shock that came with the knowledge. Talking about it is good. Don't let those feelings bottle up inside you.

Hope to see more posts from you.

[Amy24288]

Thnakyou grizabela, well luckily i have lots of support where i can just blurt my feelings and thoughts out which is great! Still trying to look into the condition more, but there just seems to be many varieties! Thankyou all the same. x

[greydeadhead]

Hello Amy...
I have never heard of your condition, but you will be hard pressed to find a more compassionate, caring and sometimes crazed group of people on the web. So, welcome, have a great day and be well...

[Tara98]

Hello Amy,
You are not alone.I too have the MRKH sindrom.I am from Europe,I was diagnosed a lot of years ago...if You have any question,pleas,feel free to write me
my e-mail is:Patry@vip.hr
take care darling
Patry

[Tara98]

hello,it's me again
i have forgotten to tell you that you can join a very special support group
http://health.groups.yahoo.com/group/mrkh-grrls/ where you'll find out how many are there....
kiss
Patry
p.s.
sorry for my english

[rangermonks]

Hey all:

I'm another mrkh person. FYI, it's not the end of the world. My condition has caused some "angst," imagine being hot and heavy with someone, and in the back of your mind your wondering - "exactly how do I bring up THAT subject?" My advise to anyone with - learn, learn, learn. Don't wait for your doctor to tell you. I had corrective surgery in the SF Bay Area, and was never told I had mrkh, just fixed the vagina and let me on my way. At a nationally known hospital!!! Argghhh

I highly suggest surgery or dialation, though some will say you shouldn't place so much value on vaginal intercourse. Vaginal intercourse is fun, feels good, and a natural part of a healthy woman, so why not? But do what is best for you, and don't force anything. It's not just a medical decision, it's psychological as well.

Best wishes all.

SS

[CARLA]

Hello Amy, I have heard of your problem and have witnessed the surgery first hand. I spent 22 years working in a hospital so you see many things.. I'm not a nurse or a Dr. But I can say this your not alone. Rangermonks suggestions are excellent and worth looking into. It is a safe surgery, and the results are usually excellent. This is the 21st Century and nothing is impossible in the Medical field..

Think about your options and search your heart and mind when making a surgical decision.. You will do the right thing.. I only wish you the best.. Your a women no matter what..

[rippox]

Hi

Only just come accross this forum and joined. I really feel for you Amy, and others with this. I found out at age 15, am now nearly 30. I really felt I was the only one. Particularly as I only forund out their is a proper name for this! I am amazed that stats. say 1 in 4 to 5 thousand females! but I guess its not something people talk about much!! I feel a little resentfull that at the time I felt just left by medical profession, no councelling/support for future and it was too difficult to talk much to my parents. They had there own struggle of guilt of it being their fault and upset for me. I always felt it was my secret and felt so embarressed to talk to anyone about it. I am now married and have adopted children. The adoption process was probably the first time I have gone back through the auful time of being looked at by docs and finding out all this.

I do think some bits of life are tougher with this than others. Definately hard when friends are talking periods and definately hard when people talking having babies, but as I have got older (oh so wise now!!?) there seems to be a big increase in fertility probs( IVF seems an auful experience) and its generally not such an issue to me. Difficult when people ask of birth of my children! but generally I'm open about that if its appropriate for them to know.

Relly interested in others experiences/ feelings, how affected their life.

Best wishes to all

Hello Amy
I have never heard of this before.I wish you all the very best & there has been some positive feed back for you already.Nice people here

[azra5406]

HELLLO AMY!!! hi my name is azra..i am currently 19 years old and i found out i had MRKH when i was 15. i just recently had surgery in order for me to have sexual intercourse. its been almost a month and half after the surgery and im doing great! of course i have my days..it was a tough road to take...but i am doing better...if you have any questions or you just need to talk to someone who understands you can e-mail me at any time.

in case you cannot access my email address through this thing it is krazedprncess@aol.com


hope all is well take care

SINCERELY,
Azra