MRKH/Rokitansky syndrome

A forum for our physically challenged members.
Amy24288
Posts: 7
Joined: Fri Oct 07, 2005 11:16 am

MRKH/Rokitansky syndrome

Post by Amy24288 »

Hi, i am new to all and i wouldnt labelled my self as phsyically challenge but i have recently found out that i have rokitansky syndrome, for those of you who dont know, this is when a women is born without a womb and sometimes even without a vagina. Finding this out was such a shock and i find it hard dealing with it. It would be lovely to speak to someone with the same syndrome so if anyone fancies a chat about it email me on amyrogers@dsl.pipex.com. Anyone can email about it as i would prefer to talk about it rather than store it all up inside me.

Thanks x
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BabyRider
Posts: 10163
Joined: Sun Jan 02, 2005 1:00 pm

MRKH/Rokitansky syndrome

Post by BabyRider »

Hi Amy, and welcome to FG!

I have never heard of your condition, but you've found a great place to discuss it, and all sorts of other things, as well. I'm sure there will be quite a few people along shortly interested in hearing more about this. The only thing I can tell you is, we tend to hash stuff out in public, so if there's things you want kept private, use the PM system available to you here.

I hope you take a look around at all the other topics we have going, it's a huge forum, but we're quite a bit like family here.

Welcome and enjoy!! :yh_peace

[FONT=Arial Black][SIZE=3][COLOR=blue]I hope you cherish this sweet way of life, and I hope you know that it comes with a price.


[SIZE=3][COLOR=blue]~Darrel Worley~[/COLOR][/SIZE]


[/COLOR][/SIZE][/FONT]










Bullet's trial was a farce. Can I get an AMEN?????




We won't be punished for our sins, but BY them.






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Bez
Posts: 8942
Joined: Mon Aug 01, 2005 5:37 am

MRKH/Rokitansky syndrome

Post by Bez »

Hi Amy...I can't think of anything worse to happen to a woman, and to find out at your age must be hard to handle.

I know absolutely nothing about your problem, but there must be loads of gals out there that can't have children for all sorts of reasons and would be able to offer you the support you're after. Everyone at FG will be asnwering your post I'm sure, and I hope you get comfort from them....my thoughts are with you Amy....chin up...you'll get through this.

A smile is a window on your face to show your heart is home

Amy24288
Posts: 7
Joined: Fri Oct 07, 2005 11:16 am

MRKH/Rokitansky syndrome

Post by Amy24288 »

Thankyou Bez that helps!
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pina
Posts: 2006
Joined: Wed Jun 08, 2005 1:52 pm

MRKH/Rokitansky syndrome

Post by pina »

Hi Amy and welcome, sorry I cant add to what BR and Bez have said, but I've never heard of it either, stay and chat to everyone we're very friendly here and always give support and advice where needed. :-6
















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LilacDragon
Posts: 1382
Joined: Wed Sep 28, 2005 4:23 am

MRKH/Rokitansky syndrome

Post by LilacDragon »

Hi Amy and welcome to the asylum! I had never heard of your condition either, so we will have a lot to learn from you.

This is a great bunch although, on occasion, you will find yourself wondering who let some of the members out of their rubber rooms! :wah:
Sandi



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OpenMind
Posts: 8645
Joined: Sun Sep 11, 2005 3:54 am

MRKH/Rokitansky syndrome

Post by OpenMind »

Dear Amy. First let me say how welcome you are to the garden. Secondly, I would like to extend my condolences. If there is any way we can help, we will.

For those who do not know this condition, this site may help - http://www.emedicine.com/ped/topic1381.htm.

It might also help you Amy to take a look at this site - www.surrogacy.com/online_support/mrkh.

As a man, I would like to say that you are just like any other woman in the Forum Garden which is full of wonderful women - that is, out of my hands reach. :wah:

I hope you enjoy yourself here for years to come.
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mominiowa
Posts: 1576
Joined: Sat Feb 26, 2005 9:39 am

MRKH/Rokitansky syndrome

Post by mominiowa »

HI Amy! Welcome...I have not heard of it either - I don't think, but ..a little girl that was at our babysitter -back in 94' was born with no vaginal opening or uterus. She had her urethra and a anus and that was it. Her mom had said she could have surgery to repair it when she was older. She was a "devilish" smiley little thing and I wonder about her now and then. She would be 13 now...I will be thinking of you and hoping that life brings you happiness and smiles..always!:-4 Please stay and enjoy yourself here...you will make many friends and maybe have a few (TONZ) of laughs!:-6


~~The Family~~

Happiness is knowing where you come from...

Who you are...

And why you are here.....
Amy24288
Posts: 7
Joined: Fri Oct 07, 2005 11:16 am

MRKH/Rokitansky syndrome

Post by Amy24288 »

I cant believe the support i have had, i didnt even think anyone would reply. Well if anyone does have any questions, feel free to ask them, because nothing suprises me anymore! If any one knows someone with the condidtion it would be lovely to hear their story aswel, just so i know i am not the only one!!! :wah:

Thankyou Openmind that first website even helped me! Thankyou all. x
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OpenMind
Posts: 8645
Joined: Sun Sep 11, 2005 3:54 am

MRKH/Rokitansky syndrome

Post by OpenMind »

You are more than welcome. Think of us here as friends. If you just want to chat about life, the universe and everything, that's also what we are here for.:)
grizabela
Posts: 43
Joined: Wed Oct 05, 2005 10:03 pm

MRKH/Rokitansky syndrome

Post by 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
Posts: 7
Joined: Fri Oct 07, 2005 11:16 am

MRKH/Rokitansky syndrome

Post by 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
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greydeadhead
Posts: 1045
Joined: Fri Oct 15, 2004 8:52 am

MRKH/Rokitansky syndrome

Post by 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...
Feed your spirit by living near it -- Magic Hat Brewery bottle cap [SIZE=3][/SIZE]
Tara98
Posts: 2
Joined: Sun Nov 06, 2005 2:28 pm

MRKH/Rokitansky syndrome

Post by 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
Posts: 2
Joined: Sun Nov 06, 2005 2:28 pm

MRKH/Rokitansky syndrome

Post by 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
Posts: 1
Joined: Thu Nov 10, 2005 3:03 pm

MRKH/Rokitansky syndrome

Post by 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
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CARLA
Posts: 13033
Joined: Thu Nov 25, 2004 1:00 pm

MRKH/Rokitansky syndrome

Post by 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..;)
ALOHA!!

MOTTO TO LIVE BY:

"Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, champagne in the other, body thoroughly used up, totally worn out and screaming.

WOO HOO!!, what a ride!!!"

rippox
Posts: 1
Joined: Sun Apr 30, 2006 11:48 am

MRKH/Rokitansky syndrome

Post by 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:)
azra5406
Posts: 1
Joined: Sun Mar 25, 2007 12:04 am

MRKH/Rokitansky syndrome

Post by 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
Tater Tazz
Posts: 2938
Joined: Tue Oct 03, 2006 9:25 am

MRKH/Rokitansky syndrome

Post by Tater Tazz »

Hello Amy, I have never heard of your condition, but I would be more than glad to listen if you need someone to talk too. Good luck to you! tazz
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Marie5656
Posts: 6772
Joined: Tue May 09, 2006 10:10 am

MRKH/Rokitansky syndrome

Post by Marie5656 »

Tater Tazz;582619 wrote: Hello Amy, I have never heard of your condition, but I would be more than glad to listen if you need someone to talk too. Good luck to you! tazz



Hey, tazz..this thread is a couple of years old, and I notice the originator of it only made 6 posts..doubt she is even still around.
Amy24288
Posts: 7
Joined: Fri Oct 07, 2005 11:16 am

MRKH/Rokitansky syndrome

Post by Amy24288 »

Hi Tazz, i am still around, just not posting on the thread. If you would like to chat or have any questions about the condition then feel free to email me on amyrogers88@hotmail.com.

Hope you are well.

Amy xxx
naomi
Posts: 2
Joined: Tue May 15, 2012 10:59 pm

MRKH/Rokitansky syndrome

Post by naomi »

I found out I had rokitansky syndrome when i was 16, so you would have thought I would have a grip on things by now, yet I've felt alone for so long. This is my first attempt at taking to others who may be going through the same ordeal. Just want to say hi to you all, hoping some day I can open up and say more, right now its a struggle to put my thoughts in writing.. look forward to the day I can :)
Clodhopper
Posts: 5115
Joined: Mon Feb 25, 2008 5:11 pm

MRKH/Rokitansky syndrome

Post by Clodhopper »

Helo naomi. Sorry to hear about your difficulty. Since this is your first post, I thought I'd just say "hi" so you know you aren't being ignored.

Should also point out that the post before yours on this matter dates from Aug 2007, so some of the people might not still be posting.
The crowd: "Yes! We are all individuals!"

Lone voice: "I'm not."
naomi
Posts: 2
Joined: Tue May 15, 2012 10:59 pm

MRKH/Rokitansky syndrome

Post by naomi »

thank you for responding :) do you know of other forums I can join? Do you mind me asking, why you joined this forum? what is your status with rokitansky? how have delt/are you dealing with it?

is it better to email? you can email me if you prefer privacy; naomi.g87@live.com
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spot
Posts: 37429
Joined: Tue Apr 19, 2005 5:19 pm
Location: Brigstowe

MRKH/Rokitansky syndrome

Post by spot »

Hi naomi,

The sole connection this site has with MRKH/Rokitansky syndrome is this thread, as far as I'm aware. Those with an interest see the thread on Google and sign up to post into it but the few members are spread out over a seven year history. As a way of getting information or making contacts it doesn't seem very satisfactory. A couple have left email addresses like you did, if you mail them they might log back in here and pass on more of their experiences and advice.

By all means hang around and chat with the members. Who knows, in a year there might be more activity in this thread and then you'll be our resident expert.
Nullius in verba|||||||||||
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Clodhopper
Posts: 5115
Joined: Mon Feb 25, 2008 5:11 pm

MRKH/Rokitansky syndrome

Post by Clodhopper »

I hadn't even heard of this syndrome until your post came up in New Posts and I had a look. Sorry. Then I noticed this was an old thread and thought I'd warn you there might not be much response.
The crowd: "Yes! We are all individuals!"

Lone voice: "I'm not."

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