Hello

[Josie972]

Noone has posted in here so I hope I start something off.
Let me start by introducing myself.
I was diagnosed with MRKH when I was 13 after I was already fully
developed and still no period. The whole dianosis peroid was
torturwe for me. All the doctors, looking at me like I was a freak
of nature made me really feel like I was abnormal. The test were
very similar to what all of you had EKG, exrays, sonograms, etc.
Some were painful. The one that stands out is the exrays that had to
be taken with a catheter. I was fully awake and all I did was cry
while I layed on that cold metal table while the technician took the
exrays telling me not to breathe. How can I stop crying when I just
had a tube stuffed in me! The nerve!
Anyway...I remember when I was told. I was getting dressed after an
exam and when i walked in the room I saw my mom crying. As soon as I
saw her I knew something was wrong. I don't remember how the doctors
told me or anything I'm a blank. All I know is I had another doctor
to go to and more tests to take before an operation. My mom and the
doctors discussed it with me and a colovaginoplasty was determined as
the best surgical method. (didn't know that then of course)
All I know is I was suppose to have a small bikini line incision and
it turned out to be a huge scar from a few inches under my breast to
down, around my belly button and down to my hair line. This will be
my constant reminder. Aside form the discharge mood swings and
depression.
11 days in the hospital and one year later I had to go through the
whole surgery again. The first one was unsuccessful due to lack of
blood circulation. I remember the second one being worse than the
first. After that I was depressed and saw a therapist for a long
time. Also had follow up visits until I was 19.
I've learned to deal with things as best as I could. I know that up
to this day I ask myself "why me?"
Thanks for listening 8o)

Josie Now 29 dx at 13
:D

[Esther]

welcome to the board. There hasn't been much action here, but hopefully it will take off soon. Your experience is similiar to ones that I hear very often, which really sucks. Hang in there, and keep the faith in yourself
esther

[renee723]

Hi! My name is renee.. i'm 15 years old, and i was just diagnosed w/ MRKH yesterday. I turn 16 in 2 weeks and 2 days. i don't know really how to deal with this. i just feel like crying all the time. my doctor is great and everything, i just don't know how to deal with it. i feel like i should be keeping it all to myself and not tell anybody about it. but it's so hard to hide my devestation about this when my parents are wanting me to still go to work and cheerleading and everything. i feel like crying all the time.. but yet it just won't come out. my parents are going to get me into a therapist, my doctor gave us one lady's name that is supposed to be awesome.. but i can't get in for almost another month. i'm desperate for any help i can get....... i'm confused about how everything works.... and most of all, i'm hurting inside because i can't have babies. that's all i've ever wanted in my life was to have children.. i was one of those little girls that played house all the time when they were little and walked around with a pillow under my shirt so i could figure out what it felt like to be pregnant. all i want is somebody who understands what i'm going through and could maybe help me out a little bit. if you see this please write back..... it would mean the world to me because nobody understands what i'm going through unless it's happened to you or your going through it too... ya know? thanks again


- <3 always -

[Esther]

Dear Renee,
There isn't much I can really say to make you feel better. What you are feeling is very real and you should try to let yourself feel it. There is a lot to be sad about and that's ok too. I am 45 and have a wonderful relationship and adopted son. We are a real family.

I think it's great that you are going to see a therapist. I wish I had that chance when I was diagnosed. This is a real shock and there will be tough times ahead so having this support will make all the difference in the world. When you are more settled you might want to talk to a best friend too. Don't rush yourself. There are some support groups that you may also want to join. They are listed on the www.mrkh.org web site.

Where do you live? I may know some folks for you to connect with when you are ready to talk to other women.

Please write anytime. Maybe a journal would help you process some of what you are feeling. Even though I know your saddness, I also know it gets better with time. It's just sucks getting through it. Keep in touch and take care or yourself. Maybe a special treat is in order....
esther

[Unregistered]

Hi Renee -

There are are a lot of us, just like you......we too have cried at the news the news that we are MRKH.......I urge you to see the psychologist and talk this out.....too bad they didn't do this when I was diagnosed........many of us have felt so alone until we discovered the internet and all of our MRKH sisters.........

Search the web, join all the groups.....you are not alone, and this isn't really all that strange........think of all the celebs you know that don't have children or have adopted, and you can bet MRKH or something like it is at the root........we are working to get MRKH some recognition.......

Regards,
Madge

[renee723]

Hello! It's been 12 days since my doctor told me what my problem was. I think i'm doing a lot better, but still i haven't been able to feel like what's happening is really true. I am getting better though, finally sleeping and really things are back to normal. I am scheduled to see a physcologist on August 9th, which really stinks, because that's my 16th birthday, but that's the only time that they could get me in before the 21st. After i see her, should i see her more, or should one visit be enough? i just need somebody to talk to that won't go tell my parents everything i say, and whatnot.

My mom got on this message board the other day, and read all my private messages. it made me so mad, and i didn't talk to her for like a day, but now i feel bad because she's just trying to help, but still.. it's my business right? i don't know. i don't know why i'm pushing my parents away.. i just don't feel comfortable talking to them about everything that's going on. i just don't know how to address them about stuff like that.:confused:

I've done some researching on the internet, but basically i keep finding the same things over and over, do you know any websites that are specifically for people with mrkh, like message boards or chat rooms? well, i better go! thanks for listening!

[Esther]

Hi Renee,
Glad you came back. Sorry that your birthday feels hard because of therapy, but 16 is a special year, and this could be a sign that you are taking control of your life with a more adult approach. You may want to see the therapist more than once. It's helpful to have a supportive emotional relationship already established because you will have to make some big decisions about MRKH that you shouldn't have to make alone. There are other support groups too that could offer you some support.

Your parents should respect your privacy. Maybe you can talk about that with the therpist, and maybe the therapit can talk to your mom. THis is a shock for parents too, and they need help. They just need to get it without interferring with your needs. If you want to write me privately you can write me at mrkh1@<hidden>
I also have a web site that you may want to check out. www.mrkh.org
There is a link on the support groups page to the Young women's Health center at Boston Childrens' hospital. They have teen oriented information on their web site that may be helpful. Hang in there, and keep the faith. I'm so glad you're feeling better. It keeps getting better, but there will be some tough times too.
Keep in touch!
esther
www.mrkh.org