You are viewing mrkhwomen

MRKH- DILATION

Posted by 2emily25 on 2013.06.04 at 20:40
Hi all,

Hope someone is out there! I'm new to LiveJournal so just finding my feet. Just a little about myself, I'm a 28 year old from Australia. Found out I have MRKH at the age of 18 in the usual tragic devastating way that we all have. To think that it's been 10 years! I now have a supportive partner who loves me for me! I believe that the saddest, most tragic part of MRKH is that it's not spoken about. If someone has cancer, at least then the family can talk about it. My mum and dad do not speak to me about this anymore (not that they ever really did). It's swept under the rug like last winter's dust! Yet for me, the pain is often so real, so raw and so hard, that how can I survive it alone? I have cried numerous times simply uncontrollably. You know those tears that just have to come out and it's like you are crying from the deepest part of your soul...crying for all the children you will never ever have! But I'm almost past the tears and now I'm moving on with my life. I have been doing the dilation process for about 4 years on and off. I am 8cm on the largest dilator now. The doctor told me I should be done in 6-18months if I use it twice a day for 20 minutes....obviously it's taken me a lot longer. I have good and bad days. My doctor always gave me the dilators as an option and never suggested surgery ( I don't think it's that common here in Australia). I would love to hear anybody's stories and connect with you all...it's so great to know that I'm not alone in this!!

Emily


My Story

Posted by zuzuokata on 2013.01.26 at 08:42
Hi everyone!
I am 30 years old. Was diagnosed when I was 15. I am from Slovakia. In my country, a gynecologist is not somebody, whom you are referred to by your GP, but a doctor who becomes part of women’s lives. You see him on regular basis like your GP and dentist . So I am lucky to have been seeing a very nice woman gynecologist since then.
That made a great deal of difference. She was very gentle, by explaining me the whole situation. I must say I had a mixed feelings about the whole situation (my mum was quite upset, I think because as a grown up woman she knew what a ordeal it was). But for the rest of my teen years I was even proud to be different :) .
I think that the fact I wasn`t able to have a sex started to occur later, at the end of puberty. My doctor had never really mentioned a dilator. She had always talked about a partner and serious relationship. My shortened vagina was suppose to be expanded surgically and it required regular intercourse afterwards.
I guess that might come from her religious believes or perhaps real sexual act might work better (just my assumptions). However it had not always been easy explaining my situation to guys. I tended to end my relationships before they could develop into something serious only to avoid confrontation. So how could I find a serious relationship when I was afraid to talk about it with a potential partners? I found myself an a vicious circle. I waited until I was 25 to start having sexually fulfilling live with my boyfriend with whom I`ve been since. And here come the interesting fact. I didn`t need a surgery after all. It all stretched after a while of trying, though it was bit painful in the beginnings (and it can still occasionally be) .
The fact that I cannot carry a child is hitting me now. At the age, when I am surrounded by babies and pregnant friends. And not only that, I discovered my ticking clock. I would like to start family at some point. I know there is a possibility of my own child carried by a surrogate mother and I am hoping that one day I will become a mother.
I hope my story brings bit of a light to your questions!
All the best!
And think of all the money we save on san towels! ;)
Zuzana


Default

Anonymous Comments

Posted by jenn1224 on 2012.09.23 at 23:39
I just noticed and unscreened a bunch of anonymous comments.  Unfortunately, unless you are replying to a post or comment I wrote, I don't get any kind of notification that the comment exists, and therefore might not notice it right away (meaning no one else can see it either).

The best way to get your question or comment seen by members of this community is to join the community (this requires joining Livejournal, which is free) and making your own post!  If you choose, you can even make a post that is visible only to members of this community, which can allow for a little more privacy.

If you have questions about this, free free to leave a comment on this post.  Because it's my own post, I should be notified even if you post anonymously.


Re-opening the can of worms

Posted by jeneferwong on 2012.05.08 at 21:17
I finally found the name to this abnormality I am living with for the past 30 years. Hello MRKH, nice to meet you. With the correct name, it gave me more insight to closer to being a normal person. I am actually "excited" with the options available after leaving this for 12 years. I was diagnosed at the age of 18. The same "once upon a time" story like most of you, walking out of the clinic with an answer to explain the absence of menstruation = born without an uterus and vaginal canal. 

I lived in a tiny country called Singapore, so far there isn't a doctor available whom perform vaginal reconstruction. My options are 1. Do nothing 2. Seek medical options overseas such as USA or Europe.

I would need your help to share your experiences or kind advise if you have done either 
Laparoscopic Vecchietti technique or Laparoscopic Davydov technique. I found this clinic in Atalanta http://www.neovaginasurgeons.com/, any one heard of them? 

Looking forward to your comments and I am giving the dilators kit a shot first as of now till I have gather enough information to plan my next move.

Yours truly,
Jen


New Blog

Posted by Shylo Van Gass Wheeler on 2011.12.14 at 19:21
I have developed a new blog to help parents who are dealing with the same issue.  I have not found a lot of girls being diagnosed at such a young age.  I hope my blog will help someone else who is struggling.  http://cbugsjourney.blogspot.com
Please give your insight and any suggestions.  Thanks again.


The shocking news

Posted by Shylo Van Gass Wheeler on 2011.12.13 at 21:47
In August we took our 11 year old to the er with the thought of appendicitis.  They did an ultrasound and then turned to a CT.  The good thing was it wasn't her her appendix but the dr said we needed to see our primary care because they found something unusual in her results.  Her uterus was extremely small for her age.  Not sure what to think we called her primary dr the next morning and she reviewed the results.  The news was shocking, she had a piece of tissue where her uterus was suppose to be.  My wonderful dr was on top of it.  There was one pediatric gyno in new mexico and she called them, she was out of the country at the time by my dr followed through and talked to her and informed her of the situation.  SHe then made an appointment for us and everything.  I think we were in shock.  We didn't know what to tell our happy, wanting tons of children daughter what her future held. I researched all I could find.  During this we were dealing with her eating issues.  So she was having a lot to deal with.  We waited until a few days before her appointment with the specialist before we told her.  A month before we had to tell she had some food alleries and peanut butter was one of them, she doesn't eat meat because of sensory issues so this news to her was beyond comprehension for her, she cried a lot.  Because of that reaction we were afraid to tell her the upcoming news.  SO my husband and I found the time by chance with her and we told her basically that she would not be able to have kids in her tummy, she would never have a period.  WHat else do you tell an 11 year old.  As a mother my heart was torn with the loss that she will face as she gets older.  I took her to her appointment and the reviewed the ct results but would not do a physical exam because of the shock it would be to her.  So we are waiting for a couple of years then she will sedate her to do the physicl exam if needed to not cause any undo stress.  But the results was that she has a long trial ahead of her.  SHe has no uterus and no vaginal canal.  It tears me apart knowing of the pain she will face with the social and the physical aspect.  Our goal as parents is to allow her to accept this issue not as a disability but something that makes her unique and special. It will become a part of her daily life.  There is not a lot of info for kids this young being diagnoised, so I am sure there are parents out there dealing with this issue.  I am starting a blog to journal and follow our lives as we deal with this for the many years to come.  Right now my husband and I feel like we are floating along a rapid river without a life jacket.  We have our faith and we have each other as we step forward.  Thanks for listening, it is hard to talk to "normal" people about this whose lives have not been shaken by this issue.


Hi

Posted by shugashoop on 2011.11.25 at 23:43
I am an 18 year old woman, who found out last year that i have MRKH syndrome, it was a heartbreaking thing to go through and at the time i felt really alone. Almost as though there was no point with anything any more, but a year on i am now starting to come to terms with it and accept that is the way i am and part of what makes me myself. I am so glad to have found a community with other women who share my experiences and are going through the same as me. It makes me feel less alone and brings a comfort that i have people who actually understand how i feel xxx


MRKH

Posted by gia00 on 2011.08.07 at 00:11
Hello everyone,

I´m 21 old girl diagnosticed with MRKH and I need your help and support. I bought the dilatation kit and started the dilatation process and I would be so grateful for all information, personal experiences, feeling and everything you think about. I cant control my moods, I´m so sad of this whole situation and want to have a normal life without the fear that someone could find out about my diagnosis.
Please write me on my email gia00@windowslive.com (gia and two zeros) ,it would mean everything for me.

thanks a lot
love
gia


hi

Posted by lef93 on 2010.10.28 at 18:48
 hi
im 16 i live in england in birmingham
im so glad ive found this site ive recently found out that i have MRKH syndrome
im very confussed i understand what it is and the implications are but i dont understand why it isnt known of well not very well
i know of the options availiable and i am waiting for an appointment at the womens hospital
i am jus curious to speak to other women about this and find someone i can speak to that understands the feelings i have i dont know what to feel its like im tryna get on with my life when i havnt even dealt with it im thinkin about a levels and university when really i need to sort this first
any infomation or experience of dilators and surgery would be a massive help
jus feel alone in all of this would love someone to talk to
thanks :) 


Condition Survey

Posted by slmom on 2010.04.11 at 07:58
Current Mood: curiouscurious
Greetings all,  I am a mother of an MRKH daughter, age 26 (dx @17) who is getting along quite well for the most part.  Married with an adopted son and a full life.  She has started having some health related issues like Urethral cysts and a new dx of Advanced Arthritis.  Years ago there was a survey that appeared on MRKH i think that listed the number of women who had various health issues related (and perhaps unrelated) to MRKH.  Like 82 0r75% had skeletal abnormalities and things like that.  Does anyone know where I could see such information?  I'd like to refresh my understanding and know what things might lay in store.  

If there isn't such information out there, perhaps we could start something here.  My daughter has the following:
  • no uterus, cervix or vagina (dimple was dilated to form vaginal pouch)
  • Ovaries must be present they say, but were not found with MRI or ultrasound
  • both kidneys are present
  • no hearing loss yet
  • skeletal abnormalities (hips and knees come out of joint easily
  • advanced osteo arthritis
  • Urethral cysts or diverticulum
  • poor muscle tone, very soft scalp and connective tissue
  • anxiety disorder 


Previous 10