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priscilla
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
Linz21
Hi Priscilla

Just read your post. It is really nice to see that we are not alone out here, as not that many people have what we got I find it amazing when someone talks about it as no one I know does.

I am glad your husband accepts for who you are and I hope your story inspires us all, after being diagnosed at 18 and I am now 21,, I still not found the right person but Prince Charming is out there somewhere 

Hope your well
Linz


QUOTE (priscilla @ Dec 7 2007, 11:20 PM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
Kayla
[/font][/b] I was, also, 16, when I found out that I had MRKH Syndrome. I was devastated. I never told anyone how I really felt about the situation, I just said that it really didn't bother me. I was one of the lucky ones to have a boyfriend that when I told him he didn't run. I was scared of that. We have been together for three years and are talking about getting married and having a surrogant mother. I am very open with my situation, because I want people to accept me for me and not someon else. At times it is verydifficult to see women who are carring babies and know that you will never be able to experience that. It is helps to know that there are other people out there that are in the same situation and know that you are not alone.




QUOTE (priscilla @ Dec 7 2007, 07:20 PM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
huggbutt
rolleyes.gif
hi im now 40yrs old i had op at 17 no follow ups no support from outside! i am happily married to my husband he is great. anyway yesterday i ended up at uchl london hospital i have a prolapse of the bowel tube they put in my front passage.a build up of scar tissue round front enterence.they have just found out i have a horse shoe kidney that i never knew.so i will be having another op in new year. i had my first visit with a clinical phycologist today wich was great i cried and cried. they now think i may have another syndrome called turner syndrome the two together is rare. my husband always said i was special i am special i have been though a lot and its gonna be tough for a few months but i can see the light at the end of the tunnel know
biggrin.gif
QUOTE (priscilla @ Dec 8 2007, 12:20 AM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
funsize09
unsure.gif Hi Priscilla;
I am 17 going to 18 in less then a month and just found out less than a week ago that i had mrkh! It has been really hard to deal with but I tell everyone that I am ok and it doesn't bother me. My doctor told me less than a year ago to just let nature take its course. But I went to join the national guard and I had to get a letter from the doctor saying I was ok since I had never had a period. So I went to the doctor and found out. It was really hard to hear. I mean it has always been in the back of my mind that I might not be able to have kids, but out of all the times that I have to be right, why now? Im lucky to have a boyfriend that has accepted it and we have talked about when we get our lives together and get the money that we can do the surrogant mother thing. I mean he is 24 and he could go get any other girl but he has chose to stay with me through this, I feel a little lucky. I mean my family thinks its some big announcement and they can just talk about it like its no problem and it really gets to me. None of my friends have it so I feel like an outcast. Always hearing "Your lucky that you have never had a period, you aren't missing anything." But they don't know what I'm going through. Not having any one to talk to about this that can relate has been really hard. please write back...

sad.gif
QUOTE (priscilla @ Dec 7 2007, 06:20 PM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
priscilla
HI funsize

Sorry to hear you have been told you have MRKH. My heart goes out to you as i know how much hurt and anger you must be feeling. And also the tears.

Pls ask me anything regarding the syndrome and i will try to help you in anyway i can.

Also i to went through the same stage off thinking my partner would be better off with someone else and it will get better i promise you. Enjoy the relationship you have.

I know the anger you feel when you get told " u r so lucky u don't have a period". All i feel like shouting is well at least u have a chance off having children I DON'T. It makes me so annoyed that some people just don't understand the hurt it causes us and the upset.

Also you will also feel ready in your own time to tell them you have it so don't feel you have to tell them. I couldn't tell people at first as i felt different to other women but i am just the same and no different.

So pls keep in touch as i would like to know how you are and it will also b nice 4 me to chat to someone who knows what i to went through.

So take care

regards Priscilla
priscilla
Hi to all the people to have sent me messages regarding having MRKH syndrome.

How are you all getting on as would be grt to here from you and to chat to someone who knows the pain and hurt i went through.

If there is anyone who has got MRKH or found out pls write to me and i will help in anyway i can

Regards Priscilla x
Sungstar86
QUOTE (priscilla @ Dec 23 2008, 07:08 PM) *
Hi to all the people to have sent me messages regarding having MRKH syndrome.

How are you all getting on as would be grt to here from you and to chat to someone who knows the pain and hurt i went through.

If there is anyone who has got MRKH or found out pls write to me and i will help in anyway i can

Regards Priscilla x




Hi Priscilla biggrin.gif

I am new to this group having only joining today. I was diagnosed with MRKH in January 2006 when i was 19. i am now 22 and i am so glad the internet finds me useful sites like this where i can get intouch with people going through the same situation as us.

How are you dealing with this at the moment? I tend to struggle round christmas as you see so many little children with lovely smiley faces but i just smile and pretend nothing is up

I hope everyone had a great xmas?

Loadsa Love
Leanne xxxxx
priscilla
Hi leanne grt to hear from you. Hope you had a great xmas to.
sorry to hear that you were diagnosed with MRKH in 2006. I know how you are feeling as its been 13 yrs now since i found out.

Regarding your question about how to deal with the children situation at xmas i to find it hard. I tend to have a bad time around xmas. I feel that you never get over it completely as even after 13 yrs i still have my good and bad days.

Since 16 yrs off age i have been on anti-depressants because off it and the thought off never having children will always be with me. But i try to get on with things but it is always with me in the back off my mind

How are you coping in yourself? Pls ask me anything you wish as i will help you in anyway i can. Dont feel you are alone.

It is also nice for me to chat to someone who knows how i felt when i was told.

Hope we can continue to write to each other.

Take care leanne

Regards Priscilla xxx
Sungstar86
Hi Priscilla thank you so much for replying.
13 yrs since you found out? wow that is such a long time, do you find it easier everyday or just the same as when you first found out?

Am glad am not the only one who finds it hard round xmas, i have so many friends with little kids/babies and when i visit them all with their pressies it sometimes gets to me but there so cute and its not their fault for the way i feel holding them and knowing i cant have my own. But i try to spoil them as much as i can

its always gona be in the back of our minds hun, tablets or anything else will not help us i dont think. Its quite lucky that there are so many support groups in which we can meet girls like ourselves and share experiences.

I am coping alot better then i thought i would these days, i think the fact that am still single means that i dont really need to think bout my future just yet but i suppose when i meet the right person it will prob hurt me alot more as its not just me who has to struggle with kids, it would be my partner too, is that how you feel?

Its also nice to chat with someone who feels like me, hope we can continue to write too, maybe even one day we can host a meet up for all women like us?

Hopefully speak soon Priscilla
Love Leanne xx
priscilla
Hi ya leanne its grt to hear from you.
Glad to hear you are keeping well. I agree with you that it is always going to be hard for women who have the syndrome to see other children and wishing they were yours.

Regarding the situation about how the partner would feel i have been with my husband for nearly 11 yrs and married nearly 9 yrs. From day one he said that he excepted me for who i was and that he wasn't worried about having children.

We have had our moments over the children situation as part off me would like to adopt but he doesn't what children.

So things have been hard but I know I have just got to except that it isn't going to happen and to try and enjoy life. But deep in the back off my mind it will always be with me.

Hope you will find someone who excepts you for who you are. There are men out there as I was lucky to find my husband.

I agree it would be nice to meet up with other women who have MRKH. And i would love us to keep in touch leanne.

You take care off yourself and hope to hear from you soon.
Regards Lisa xxxx
Sungstar86
Hey Priscilla
Really sorry about the delay in responding! had bit of a busy week, working and partying (the usual rolleyes.gif )

Really pleased that you have found a husband who is so understanding about it all, i just hope one day my prince charming comes along! i have got a few ex's but i have always got scared and finished with them as i cant come round to tell them! so its pro-longing me to find my right man who will understand.

Does he not want children at all? would you not consider adoption or surrogacy or have you chosen not to have them at all? it will always be in the back of your mind and its really hard to get it out but you cant shut these things away.

I would love to keep intouch, anytime you need to talk about anything at all, hopefully we can help each other biggrin.gif

Loadsa love
leanne xxxx
priscilla
Hi leanne its grt to hear from you
Hope you are keeping well. I'm not to bad but wish I could feel better. At the moment I'm going through the phrase off wanting children but its so hard at the moment as I would love to adopt but my husband doesn't want children at all.
I wish I knew what to do! I'm so muddled as I so want to be with him but the desire to want children as well is so strong.

I feel like I have to choose but I can't as I love him but also want children.

Why can't I have both! So I'm feeling pretty crap. It keeps going through my mind the same thing WHAT DO I DO!

Do I just enjoy what I've got or follow the other path. Even if I tried to adopt it may not work out.

Anyway enough off me sounds like you have been having a great time partying. I know the feeling off working. It keeps you busy.

You will find your prince charming. And you will find the courage to tell them.It is hard to bring the subject up but you will feel ready one day.

Anyway leanne I've got to get ready for work.
you take great care off yourself and hope to chat soon

Love Lisa xxx
Sungstar86
Hi Lisa, Great to hear from you again smile.gif

It must be so hard to go through what your going through now and i really dont know what the best option is. will your husband not even consider having kids not even just one? Its not that hard for Men as they think they can go through life without them but for us women its soo hard and everyone always wants their own little pride and joy!

Do you not think he will change his mind?

Yep working keeps my mind off the whole situation but sometimes when you have bad days i just dont want to be here!
But Now its a new year so anything could happen smile.gif

Hope to hear from you again soon!
Love Leanne xxxxxxxxxxxxx
priscilla
Hi leanne its so grt to hear from u!

Hope u r keeping well and wrk is going fine.
I'm not to bad at the mo just finding it a bit hard to except things but in time im sure i will get there. Some things take longer than others to get over.

Regarding the issue with the children my husband doesn't want children at all. He was honest with me from day one so i knew he didn't but i suppose as the yrs went by i thought he would change his mind.

So its just a matter off enjoying what I've got and taking each day as it comes and i suppose things will get easier. I've got my tortoiseshell cat cilla to spoil. She is 5.

Anyway i was wondering if you are on facebook? As we can keep in contact also through that as well.

How are you coping at the moment? Hope you are fine.

Well you take care off yourself and it is so lovely to chat with you.

Chat soon Love Lisa xx
Sungstar86
Hi Lisa
Its so nice to hear from you again!

I am ok, really busy in work this week so its keeping my mind really busy which is really smile.gif
Some things do take longer to get over then others but that what makes us all different.

I would of thought he changed his mind throughout the years but i guess he is sticking to his plans, but at least you know you will always have him behind you and always there for you?

Aww am sure your cat loves you for that, its nice to have bit of company like that

Yep i have facebook hun, whats your email address and ill search for you on it? its probably easier thru facebook as sometimes i forget to check this website.

am fine at the moment, just starting meeting someone, used to go school with him and reunited again through facebook, he so lovely but not told him about anything yet as its way too early so fingers crossed

hope to hear from you soon
Love Leanne x
priscilla
Hi leanne its grt to hear from you. Sorry i haven't been in touch sooner I've been working quite abit.
I'm pretty well at the moment and me and hubby getting on well. I'm just trying to get on with things and enjoy what i have got.
So you have met someone. I am so happy for you hun and i wish you all the happiness in the world.
I know you will feel so scared when the time comes to tell him and i know how you will feel. i was so scared when telling hubby. But he was so sweet about it. You will feel ready in your own time.
If you want to discuss anything regarding the MRKH don't be afraid to ask me as i will help in anyway i can.

My email address is eaton.d3@sky.com.

I hope we can keep in touch through facebook as it's lovely chatting with you.

I've got the weekend off and saw my mum and dad today and my brother.
My other brother lives with his girlfriend.

Anyway hun hope you are having a grt weekend and hope you find me on facebook ok.
My profile is a pic of me and my husband together.

You take care and hope to chat soon

Love Lisa xxx
purplerain
hello, im new to this forum and found all of your stories inspirational...

i found out i had mrkh when i was 16 and it was devastating. i never really let it affect me until now. Now im 20, my cousin just had a baby boy and i was so hard dealing with her bundle of joy...i was so happy for them but also so angry and upset at myself and my body. its still hard to deal with. i have the most wonderful boyfriend right now and im not ready to tell him what i have just yet...

im also thinking of starting the use of dilators...im not really sure yet..and im scared to tell my parents...i dont know why...but they should support my decision right?

hope to hear from someone....i've really only started researching and reading forums now...i thought i was alone...but reading about the condition is really comforting..
Daria
Hi ladies
I kind of feel as though I'm intruding into your thread here, a bit, but I thought I'd mention this: I have PCOS, and although it's not as serious and not as devastating as MRKH Syndrome, I still sympathise with how you feel with regards to children etc. My sister gave birth last year, my cousin this year, and having to be at a family get together for Easter with the two babies and my family was like torture.
I'm pretty sure there's a few more people on the boards who are just as understanding, and everyone here is lovely, so don't feel afraid of stepping out of this thread and having a look around the rest of the forum smile.gif
busybee
Hi Purplerain,

I also have MRKH. i found out when i was 17 and in the middle of my leaving cert. I wanted to be a primary school teacher, but then decided no way could i handle kids all day. So i opted for the financial sector. I figured i'd get rich and have IVF surrogacy.Still waitin to get rich!! laugh.gif

That will be six years ago, next week. It's had its ups and downs. The following year brought tears with laughs. I met a brilliant fella, and from the start i told him. I hadnt had dilator therapy at that stage. He was still brilliant. (We broke up over 2 years later for completely different reasons!!) My parents were unbelievable. They were there every step. I had to travel from Ireland to London for the treatment, and they couldnt have been more supportive. I think your parents will support your decision. It's tough using the dilators but it is another step in the treatment.

Have you heard of the Queen Charlotte of Chelsea hospital? They specialise in genetial conditions. they offer counselling, and twice a year have group sessions. I havent attended any group sessions yet, but i do intend on doing so soon. When i attended for treatment, it included counselling. I wouldnt be nearly as happy today if it hadnt of been for that counselling.

It is tough, but you will come out the other side of it. I am open about it, but there are times it hurts still. I now have a fantastic boyfriend of 3 years, who i live with. I told him nearly even before we started dating. He doesnt let me get down, and I just think now that i dont have to worry about children yet. I'm only 23, want to travel and then settle before i start thinkin about that. We both think (well hope!) it will just happen when we're ready. i dont know how or when, but thats ok cos i'm not ready yet.

Everyone is different. I got angry, i got upset, i grieved and felt sorry for myself, and i tried to pretend everythin was ok. My advise would be cry about it if you feel like it, laugh about it if you want. Write about it, or talk about it. But keep your chin up! Everything happens for a reason.
purplerain
hi busybee smile.gif

haha good luck getting rich! yeah i understand about the kids!

im so happy to hear your story. thank you for sharing. i havent been open with mine and am selective about who i tell because alot of people just dont understand it. i guess its just a personal thing. im planning to tell my boyfriend soon and i know he'll support me.

i've told my mum about wanting the therapy and i have their 100% support. as long as im ready for it then i am smile.gif im so happy i have the support there and it means alot! i think il start it sometime this year. i know it takes time and im still studying. how long did it take you on therapy?

no i havent heard of that hospital. i actually live in australia! not really sure what's out here yet hehe still gotta do my research. yeah that counseling sounds great...maybe when i start treatment my doc would do the same. she's really warm which puts me at ease.

yeah i know there's a bigger plan out there and its ironic how things work out. i had always have mixed feelings about this like you but im a really happy and cheerful person and this is one of those things i just have to learn to accept and be grateful for. afterall im alive right?! this isn't a terminal illness smile.gif




QUOTE (busybee @ May 19 2009, 09:41 PM) *
Hi Purplerain,

I also have MRKH. i found out when i was 17 and in the middle of my leaving cert. I wanted to be a primary school teacher, but then decided no way could i handle kids all day. So i opted for the financial sector. I figured i'd get rich and have IVF surrogacy.Still waitin to get rich!! laugh.gif

That will be six years ago, next week. It's had its ups and downs. The following year brought tears with laughs. I met a brilliant fella, and from the start i told him. I hadnt had dilator therapy at that stage. He was still brilliant. (We broke up over 2 years later for completely different reasons!!) My parents were unbelievable. They were there every step. I had to travel from Ireland to London for the treatment, and they couldnt have been more supportive. I think your parents will support your decision. It's tough using the dilators but it is another step in the treatment.

Have you heard of the Queen Charlotte of Chelsea hospital? They specialise in genetial conditions. they offer counselling, and twice a year have group sessions. I havent attended any group sessions yet, but i do intend on doing so soon. When i attended for treatment, it included counselling. I wouldnt be nearly as happy today if it hadnt of been for that counselling.

It is tough, but you will come out the other side of it. I am open about it, but there are times it hurts still. I now have a fantastic boyfriend of 3 years, who i live with. I told him nearly even before we started dating. He doesnt let me get down, and I just think now that i dont have to worry about children yet. I'm only 23, want to travel and then settle before i start thinkin about that. We both think (well hope!) it will just happen when we're ready. i dont know how or when, but thats ok cos i'm not ready yet.

Everyone is different. I got angry, i got upset, i grieved and felt sorry for myself, and i tried to pretend everythin was ok. My advise would be cry about it if you feel like it, laugh about it if you want. Write about it, or talk about it. But keep your chin up! Everything happens for a reason.
busybee
I know, tell me about it, in this recession!! unsure.gif

Yeah, it is a personal thing, everyone will deal with things differently. But you need the support and understanding of those close around you. When you start the therapy, it will be tough. I remember i had to suffer through it 3 times a day. and its not nice. but you can get through it by treating yourself, by shopping or ice-cream or somethin biggrin.gif But yes, i understand about the studying. I was in first year in college at the time, and i did fail 2 of my exams. It took me about 4 months before i was completely finished with the therapy. Thankfully, i made up the marks in my summer exams and didnt have to repeat any of them! cool.gif

Australia.. class!! i would definitely recommend the counselling. After the therapy was over and i stopped going to London, i began counselling in college for another 2 months, and it really helps. It helps with your outlook on things.

Exactly, it's not a life threatening condition, and no1 would even know, unless you decide to tell them.

What part of Australia do you live in??
purplerain
very true..and as a student im always broke which doesn't help! dry.gif lol

i guess the more i start to accept it the more il get comfortable telling those close to me. hmm..therapy does sound tough...i dont know anyone else with the same condition back home so sometimes its hard to talk to people about it. once i start therapy il make sure i have that support there.. i like the sound of treating myself hehe im still thinking about it at this stage so probably something later in the year. im in 3rd year doing graphic design at university and i enjoy it alot but its really time consuming work, so just contemplating the right time for things..

i live in sydney tongue.gif i heard there's a support network here but i've yet to find it. dont really know who to ask or talk to yet. i've still got to go back to my doc.
Sungstar86
Hiya Girls

Hope you are both well? Just been reading your stories and it is still so comforting to hear girls going through the same thing as me.

I was diagnosed at 19 years old and i am now 22, i try and act normal as if everything is fine but you do get the odd days when you realise its really not!

I went to Queen Charlottes Hospital last ssummer to start the Dilation therapy, unfortunelately i did not feel comfortable doing this and after returning home after the 3 days i stopped using this. I am now thinking wether to re-start again but really would like to stick to it this time.

Are there any success stories with this?

Leanne xxxxxx rolleyes.gif
SBAYLOR
I was told i had an underdeveloped uterus when I was 16. I was never told this was a syndrome or told that anyone else may have it, so i never asked questions. I was numb to the idea of not being able to have children for many years. I am now 21, engaged and desperatly want children. My fiance knows everything and believes that if we are meant to have children, we will. I have recently gotten an ultra sound that found a very small uterus 2cm then got an MRI that found no uterus. I am very confused and wondering if anyone experienced this? I am also curious if anyone heard of injecting hormones to grow the utuerus, or if anyone has looked into IVF? Any info would be extremely helpful.
Mata
Hi SBaylor, welcome to my forums. the other ladies who ave been discussing MRKH ar usually quite quick to relpy, so I'm a little surprised that they've not said anything yet. Be patient and I'm sure they'll get back to you with anything that they know.
krasotka32
QUOTE (SBAYLOR @ Jul 26 2009, 05:24 PM) *
I was told i had an underdeveloped uterus when I was 16. I was never told this was a syndrome or told that anyone else may have it, so i never asked questions. I was numb to the idea of not being able to have children for many years. I am now 21, engaged and desperatly want children. My fiance knows everything and believes that if we are meant to have children, we will. I have recently gotten an ultra sound that found a very small uterus 2cm then got an MRI that found no uterus. I am very confused and wondering if anyone experienced this? I am also curious if anyone heard of injecting hormones to grow the utuerus, or if anyone has looked into IVF? Any info would be extremely helpful.


Dear SBAYLOR, I was diagnosed with MRKH when i first visited gynechologist when i was about 18 y.o. I didn't have my period, now i'm 32, i'm from Russia, but i never could talk to anybody about this, so I went to the doctor when i was 18........... after "looking at me", my doctor told me "U r very beutifull young girl, but u will never-ever have three things in your life: period, husband and children"........... It killed me....... I was crying my heart out on the way home........ I told my parents that, but they couldn't understand why I was crying so hard, they just bought new furniture and were happy about it, and couldn't understand why i didn't come out from my room to share their happiness....... My two boyfriends left me as soon as they found out about it...... One of them told me that I'm a waiste of life.......... I came to America, I'm in realationship with someone right now for 4,5 years, but all his friends having children now, and I see how much he wants it too..... it's killing me....... he knows that I can't have children..... I know he will find somebody else as soon as he gets a chance....... I was told by a doctor that I don't have urertus as well, but I don't know what to tell u, what i want to tell u is this - be greatfull that your guy accepts u the way u r...... cause it's very rare to find a guy who will undrerstand..... i can't say anything else right now, it's too painfull, maybe im not the best advisor, but i thought it would help u.... My best wishes............
Miss-Smiley
Hi everyone!

I just happened to search MRKH and came across this site! I have just signed up and as all you women here I have MRKH too.

I have been diagnosed for 5 years going on 6 years. I have genrally coping well now but still have my down moments however I am able to jump back up real quick! Someone here was asking if anyone had a sucess story with dilation I have! I did dialtion last year. So if anyone had any questions, let me know!

Also the user from Australia I can help you and have heard a Nurse who works with dilation treatment in Sydney. Pm me and I will try and find out the details for you so you can contact her!

biggrin.gif It seems like a little lovely supportive thread here! I hope I will be able to provide more support and advise! The best kind of support I have found is from MRKH women as they are the only ones who completely understand what your going through!

I hope everyone is dealing ok with it these days!

Love to all,

Miss-Smiley! xox biggrin.gif
Mata
Hi! Thanks for joining and offering your support to the other women here. It seems that my site has become a meeting place for MRKH sufferers and I'm very happy to provide this facility to you.

A quick posting tip for you all: when you make your post, there's a little tick-box below the writing-box that says 'Enable email notification of replies'. Tick that and you will get an email to say when someone has replied to your post. Hopefully this will help avoid the (occasionally quite long) delays between new posts and responses, which is especially important when people are looking for help or information.
Miss-Smiley
Hiya Mata!

Your welcome! I have a passion to help, especially MRKH women. Intially I thought this is an MRKH forum but realised this was just a thread about MRKH. However I was still really happy to see MRKH mentioned. You see there are limited support networks for us with MRKH although more support groups these days are being made! Thank you for prooviding us with a space we can help and support each other. I hope I can be of great help and support here!

Thank you for the useful tip!

Miss -Smiley
Mata
I find it very odd: since this thread arose I've done a bit of research into MRKH and I was very surprised by how little support and information there is online.

At times in my life I have felt very isolated and had difficulty trying to find people with whom I have anything in common. I made this forum originally with the purpose of helping people who were in a similar position, so I'm happy that my forums can give a shared space to for women who are suffer from MRKH. I'm male, so relating this this issue is tangential for me: I could never have children in the literal way of women, but a child could be 'mine'. Reading the experiences of women on here is a view through a window that I will never see. Personally I've always quite liked the idea of adoption - giving an unwanted child a place that they would never have had... It appeals to me, perhaps more than conventional fatherhood, but also I don't know how I would feel if I were forced into that position. For all I know, I could be infertile: it's not the same thing I realise, but the ultimate repurcusions are similar.

Well, I've talked enough in a thread where I feel I'm off topic. I just wanted to say 'thank you' for being here, and that you are very welcome.
Miss-Smiley
I find it rather odd too that even some Drs/ medical professional are not so aware of this! Although I am lucky to have Uks national centre for MRKH diagnose + treat me. They have meetings 2 times a year which are always amazing! Also I love how they recognise that the psychological well being needs to be looked after too over here!

I sure hope the isolation has gone for you. Can you not have children too? Oh I love the idea of adoption too! After watching some documentaries on adoption, they have inspired me to adopt from China. As China has a stupid one child policy and the girls end up in orphanages. And I would like to adopt a special needs child perhaps one day. However now I am blessed with the gift of 3 children to whom I am an aunty and I will be aunty to another child in December!. I adore them to bits they are so special to me. My oldest nephew who is 3 going to be 4 soon said but we are your kids too. That was so touching to me. They are like my kids. biggrin.gif.

I feel I have become much stronger too, especially by doing the treatment. I do not know if you have read up upon that? That was the worst thing I ever had to do in my life. I am suprised I completed it and had the emotional and physical strength for it but I did! I use to cry so much during treatment it was hard inflicting yourself with so much pain 3 times a day to start off with and it even stung and I got all sore to start off with. However I was determined + motivated and if any of you MRKH women are reading this (especially the one who wanted a dilation success story) well I completed it in just over 1 month! Which is rather quick. So if you do it like your told you can complete it quick and don't need to go back. Well that is what nruse tells me she better me right. As I cannot deal with it again or do treatment again!

I have made amazing MRKH women friendships all across the globes and met up with so many, even some of my abroad friends I got to meet when they came to UK! So that was pretty cool and I recommend all the MRKH ladies here to do the same..to meet with other MRKH women. I got to meet some amazing women through having MRKH. So there is a good side to this.


Thank you Mata for making me feel so welcomed here. Your not off topic at all! Keep posting!

I chat a lot don't I? rolleyes.gif
Mata
As far as I know I can have children, but for men there aren't really any signs that would tell me until I try. Either way, I still like the idea of adoption. My own time of feeling isolated was due to not finding friends at university and really struggling to make new friends. Outside of work, I could literally go days without talking socially to anyone. It was a tough time. I've always worked hard academically and had a very logical mind, letting go of that and loosening up to be sociable was always been hard work for me. I can do it, and people seem to think that I'm a bit eccentric these days, but I still have trouble with it. I'm good at hiding it, but all my social behaviours have really been learnt from watching other people and learning how they do things. I often feel like I'm pretending (badly) to be normal. Apparently I'm good enough to get away with it most of the time, but that still makes me feel like I'm cheating somehow.

Fortunately for me, being more analytical has led to academic success, but doing a PhD only reinforced the analytical side of me, which has made me feel even more pushed away from others. It's hard to explain to people who haven't gone through that process.

I know it's from a different direction, but I emphasise a lot with some of the feelings people have been describing in this thread - feeling different in an invisible way from other people. I didn't really want to say it before, because I think it would be hard to explain in a way that doesn't sound belittling: MRKH syndrome has effects on many levels for the women who suffer from it, but I think I can understand some of the feelings that it gives you and the others on here.

And yes, you do chat a lot. I like that smile.gif
Miss-Smiley
I see, hope you are able to have your own cuties one day. I like the idea of adopting too.

Thanks for explaining how you felt isolated. It must have felt lonely with no friends at university, my friends are what make university life great biggrin.gif. I am sure you can relate in some ways. Although I have been fortutate to have awesome support networks other women with MRKH have not been so lucky. Then usually they feel very isolated and lonely too. Do they MRKH women here don't log in much these days?

I hope you had a good weekend and are having a good day! I better make my way to university for my 1st lecture after a long break!

Wow your doing a PHD! What in? All the best with that and everything!
Mata
There seems to be a steady flow of women that come to this thread, but I'm not sure how many come back and check for new posts, which is why I suggested that they tick the 'enable email notification of replies' box. I'm sure there will be more in the future, or the existing members will pop back in time.

I hope university goes well for you. My PhD was in literature, specifically narrative and identity in the work of the author William Gibson, and more generally in modern fiction and the cyberpunk genre. If you'd like to know more then start up a thread over in the daily life section and we'll have a chat, because this it waaaaay off-topic now!

Regarding adoption, maybe is a gender thing, but I've never felt strongly about having genetically my own children. I get on very well with babies and kids, but I don't feel a strong urge to have my own like many people do. I do like helping other people, so the idea of adoption feels right for me when it comes to the time to make that choice. Naturally the feelings of my partner may be different, or possibly one or both of us may not be able to have children so adoption could be the only route. You can never tell until the time comes.
Miss-Smiley
Thanks I hope this year my marks will bring up my overall level. Sounds like an interesting PHD, okay I may do.

I agree I love children and they dont need to me my blood to love them as my own. So I am thinking and hoping to adopt one day!

Hope you had a good week and have a good weekend meta.
donna
QUOTE (priscilla @ Dec 8 2007, 12:20 AM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
donna
QUOTE (priscilla @ Dec 8 2007, 12:20 AM) *
When i was 16 i found out i had MRKH syndrome and i am writing this to all the other females out there who also have the syndrome to say that you are not alone.

I know how hard it is to be told and it feels like your whole world around you has come tumbling down.
The hardest thing for me was knowing that i would never be able to have children of my own and to not know what it would be like to carry a baby.

There is alot of anger for quite some time and i also thought i would never find someone who would understand well i was so wrong i have been married to a great man for 7 years and we are still going strong.

I would like to say is if any other female with MRKH Syndrome would like to talk please send me a reply and i will try and support you in anyway i can.

Regards Priscilla xx
Miss-Smiley
Hi Donna

Did you write the previous message or did Pricila? Welcome here. Do you have MRKH too? Get posting about your story or anything on the subject you wish to talk about/ask about!

Lots of huggles and love to you! x
purplerain
QUOTE (Miss-Smiley @ Oct 3 2009, 04:20 AM) *
Thanks I hope this year my marks will bring up my overall level. Sounds like an interesting PHD, okay I may do.

I agree I love children and they dont need to me my blood to love them as my own. So I am thinking and hoping to adopt one day!

Hope you had a good week and have a good weekend meta.




hey miss smiley!

are from sydney?? i think it was my post you read? i just read your post and i'm so inspired! i've been really good lately and it helps to have the friends and family there to support you! and it only took you 1month? i'm probably going to do it later on...but i'd want to hear more about it - just so i understand more and not get so frightened...

thank you for posting that smile.gif
Miss-Smiley
Hiya Purplerain


No I am not from Sydney, I am from UK! As I belong to many support networks for MRKH, I know of a nurse and good hospital I can recommend for dilation. This nurse actually came to UK and learnt about dilation from my nurse so she could teach MRKH ladies there! After this post, I will pm you her detail.

I have a huge grin across my face reading your lastest post! I am so glad I inspired you, I love doing that! Yeah it only took me just over 1 month to dilate, but you got to me really motivated and dilate as you get told to finish it quick- which is really difficult! I started slacking the amount of dilation sessions I was meant too however increased the time limit of the session of dilation I did do! So it never made a difference and I am so happy I finished quick. There were so many times were I wanted to chuck the dilators away and give up but I am glad I never and now have that issue at least sorted. Dilation does sting a lot, hurt lots and make you so sore to start off with but thats more intially the soreness soon goes and the pain got slightly less the more I dilated. I was given nothing for pain releif, what meanies! But got a lot of encouragement from nurse and those who did know so it kept me going! However the girl who told me about the hospital I will pm you details of got a gas mask and numbing gel- so your lucky to get help with the pain relief of it and I am sure it makes dilating easier. Also by the sounds of it there you dilate for only couple of minutes but do maybe around 4 sessions a day. As opposed to in the UK you start off with 3 sessions of 10 minutes each time and then cut down to 2 sessions of 10 minutes. I think the shorter sessions make it easier, as my pain level was immense. I don't mean to scare you but just thought I would give an honest account of how the dilation was like for me. It did make me feel down at the time but I am so glad I did it and recommend it over surgery. With surgery you got to dilate after most the type so whats the point anyways? My ex psychologist moved to Tasmania, is that near you? Do you feel you need to talk to a therapist about it all? If so I can send you her details- she use to work in the UK national centre for MRKH women- where I was diagnosed. Shes amazing and though I saw her 2-3 times for a therapy session the benefits were immense and lasted months!

Well ask me any questions you have. I hope this helped you and answered some questions you had! Pm me your email or something as I don't come here much, but do try check daily into this thread!

I am glad your doing well. Awesome support is needed for us ladies with this and I am glad you have it! biggrin.gif

Lots of love and huggles to all! Have a good weekend! xox
Deanie
Hi to everyone. My name is Christine- my friends call me Deanie. I have MRKH and have known this since 1994.
I have been with my husband now for a little over ten years and we live in Australia. Like so many of you the doctors didn't ever give me a name for the syndrome--- they just told me what was missing and said "I hope you never wanted kids because you won't ever have them." I was never referred to counselling, therapy or ANY of the specialists you are NOW referred to when diagnosed. I was told by the doctor at the time that I was the first Australian diagnosed with it...like my misery was something to be proud of. I have NEVER spoken to anyone afflicted with it because I'd been told it was so rare.
I too did Dilation- with glass dilators. 3 sessions a day for twenty minutes. I hated the glass and found that sex was preferable than the dilators (when my little fan fan stretched a bit to fit one in...)- and yes..I too used to cry using them because it made me feel so.... WRONG. (If you know what I mean..??) I have a normal sex life now with my hubby and couldn't be happier.
We have the 'normal' married life and have been trying IVF now for six years. Finding a Surrogate is NOT easy- the strength you must have to face the rigours of such is sometimes too much to bear. I used to quite frequently get angry with God and find myself asking WHY give me EVERY desire for a child and then give me NO TOOLS for such.... and if you think in this fashion- you'll drive yourself crazy.
Whilst the thought of others suffering is horrible to think about it is always nice to know you are NOT alone. This now-- would be the first time I have known others like myself... I now no longer feel alone with it. 18 years ago I was told it was a taboo subject and NOT to talk about it so THANK YOU guys for talking about it. Support IS hard to find- especially here in Australia.
I want you to know that 'normal' life is possible, that you CAN have the husband and the married life. You CAN have life beyond your own thanks to modern technology and reproductive advances-- they have even planned the FIRST womb transplant recently... Woooooooohooooooooooooooooo... Cheering about THAT.
If anyone has any questions about the experiences of MRKH or IVF or just needs a smiley understanding shoulder I am here for you.
(IVF in Australia is DIFFICULT-- Surrogacy in NSW is legal....Commercial Surrogacy IS NOT.) Hugs to you all. tongue.gif xoxox
Mata
Hi Deanie, welcome to my forums. I don't know how this became a gathering spot for women with MRKH, but I'm very happy for you all to be here. I always wanted this site to be a place for people to gather to help them not feel alone - I imagined it would be one person in a small town with different tastes from everyone else - but being the first person to have MRKH on a whole continent must have been a very strange and lonely feeling. You will always be welcome to chat here!

As I said above, sometimes there are big delays between people dropping by here, so if you tick the box that says 'enable email notification of replies' you'll hear when anyone else has any questions. See you around!
Miss-Smiley
Hello Deanie!

Welcome! I just saw your messsage as I have not been here in ages. I wanted to say thanks for that lovely encouraging post! As I sometimes feel no one will want me and one day I would like to have a family! Aw my team of drs were so supportive and that did make it easier for me to deal with as I met many with MRKH too. Perhaps you could try find someone near you, there are few women from Austrlia with MRKH! Are you a member of askaboutmrkh on yahoo groups?

Oh my god! Glass dilators! That sounds scary! I also did dilation, thank god not glass ones! I hated it too it sucks and its so painful as I am sure you are aware of! But at least it's something which can be done! It's a treatment for some of it and I guess I should be remind myself and be grateful for that!

Good luck with your journey to motherhood! Hope your dream comes true soon! I have met some women who have had their babies that way and the babies them selves! The adavances in medical techniques it simply amazing!

Miss- Smiley!
michaelfixers
Hello, I work for a young person's campaign charity called Fixers.

We are currently putting together a short campaign video all about MRKH, and how it's hard to find support, hard to be diagnosed and also how its quite unknown in the medical world.

We are looking for contributors who can talk to us about their experience with MRKH.

If you think you'd like to be involved, or would simply like to know more, please email me at michael (at) fixers (dot) org (dot) uk
Mata
People don't use this forum much any more, but you could try messaging people directly. Their email account might still be active and they would get a notification of your message.
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