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> MRKH SYNDROME, You're not alone
Mata
post Aug 4 2009, 06:14 AM
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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.


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krasotka32
post Aug 26 2009, 04:48 AM
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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............
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Miss-Smiley
post Sep 24 2009, 01:36 PM
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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
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Mata
post Sep 25 2009, 12:40 PM
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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.


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Miss-Smiley
post Sep 25 2009, 03:10 PM
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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
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Mata
post Sep 25 2009, 09:46 PM
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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.


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Miss-Smiley
post Sep 26 2009, 12:50 AM
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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
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Mata
post Sep 27 2009, 10:49 PM
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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


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Miss-Smiley
post Sep 28 2009, 11:33 AM
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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!
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Mata
post Sep 30 2009, 12:32 PM
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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.


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Miss-Smiley
post Oct 2 2009, 06:20 PM
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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.
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donna
post Oct 15 2009, 08:06 PM
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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
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donna
post Oct 15 2009, 08:29 PM
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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
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Miss-Smiley
post Oct 15 2009, 11:06 PM
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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
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purplerain
post Oct 17 2009, 05:21 AM
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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
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Miss-Smiley
post Oct 17 2009, 04:26 PM
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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
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Deanie
post Nov 19 2010, 12:36 AM
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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
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Mata
post Nov 21 2010, 04:03 PM
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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!


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Miss-Smiley
post Feb 23 2011, 09:50 PM
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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!
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michaelfixers
post Oct 7 2015, 12:09 PM
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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
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Mata
post Oct 20 2015, 06:32 PM
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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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