?

Log in

No account? Create an account

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

Comments:


(Anonymous) at 2013-06-09 00:24 (UTC) (Link)
Hi Emily
Like u said, most of our stories are the same. But, as the saying goes, its no use crying over spilt milk. I reached a point in my life a few yrs ago when subconsciously I guess I just decided to move on. Yes it would've been awesome to have a life growing inside of me but we dont always get what we want And the sooner we learn to accept ourselves the way we are(in theory anyway) the happier we will be.
At the end of the day all we can hope for and all we want and need is someone who understands and accepts us, even when its difficult for us to accept ourselves, and a loving satisfying relationship in the bedroom.
I was given a dilator at 17 , hardly ever used it, didnt truly understand what "it" was that was wrong with me besides the baby bit. A few years ago I started researching mrkh and educated myself . I have beed using a dilator of sorts for the past few months and its been going well. Gained a dew centimetres. Fortunately I had a bit of a natural head start. Its width thats my biggest issue. No hearing or kidney or bone problems either.
Here if u want to chat.
Oh and im from S Africa btw. Have 2 younger brothers who migrated to your little island in january. Oh and docs here also not too clued up on IT.
ally_81 at 2013-07-18 01:47 (UTC) (Link)
Hi Emily,

I am also in Australia.

Thanks

A
Jenn
jenn1224 at 2013-06-17 17:30 (UTC) (Link)
Hi Emily;

Sometimes people's reactions to things can be as hard as the things themselves. I'm really sorry you're not getting the support you need from your family. That must be really hard. I hope you're able to talk to someone (friend, therapist?) if your family isn't helpful.

Feel free to message me if you want to talk. I don't have any experience with dilation, but I can relate to a lot of the other feelings you describe.

Jenn
(Anonymous) at 2013-06-29 13:46 (UTC) (Link)
Hi Emily,
I know exactly how you feel as I was diagnosed with MRKH when I was 24. I didn't really know what my condition was. When I was 17 I started getting worried as I didn't get my period and I went to the doctors. I did various tests and not until I found a good gynocologist who knew about my condition was able to tell me straight away what my condition was. I was given the option to use dialators to make my own opening. At first it was very hard and painful but I was determined to make myself feel normal as I was in a serious relationship at the time. The dialators helped me alot but you need to be persistent and keep using them. Once you have created the opening you feel satisfied with then its easy to maintain especially if you have an understanding partner. If you have sex regularly you won't need to use the dialators. It's been over 14 years since I used the dialators. I am now 37 and don't need to use them. I still feel sad at times when I know I won't be able to have my own baby. I found out though that I have eggs and the only option would be surrogacy but as you know it's difficult when its illegal here in Australia. I was seeing a therapist and that helped me too but deep down its finding that acceptance about yourself and being ok with it all. It's not easy and I think we will always feel down at times. It's just finding that partner who loves you for you and understands and accepts you just the way you are.
If you need any other advice feel to message. We are not alone.
Take care
(Anonymous) at 2013-07-03 20:10 (UTC) (Link)
Hii,

Thank you for sharing your experience. I was just curious to know how long it took you to dilate, what length you started with and what length you achieved etc. I am just about to start dilating so I was hoping to get some information to know what to expect. Thank you for helping.
2emily25 at 2013-07-05 13:40 (UTC) (Link)
Hi,

For me, I started with just a little dimple and now I'm at 8cm length, 3.5cm width, but it has taken 5 constant years of using the dilators. I have made the most progress in the last 2 years, graduating from size 3-5.

I started by lying in the birth position on my bed, finding the spot with a mirror and holding the dilator in place for 20 minutes a day. It's important to place it at the right angle (toward your tailbone) and with enough pressure for it to work. You should feel discomfort at first, not pain! It's important the room is the right temperature so you can relax. Try not to tense any muscles. Once I started getting an opening I then sat on the dilator using books to make it more comfortable to sit (plus it helps to be able to work on a computer or read or watch tv). This sped the dilation process up a lot for me. It's also normal at time to have an overwhelming urge to urinate during or after dilation. This will pass as you move up in length.

Don't get despondant if you feel you aren't getting anywhere...we've all been there! Remember that the dilation process is slow and it won't happen overnight. But you must commit to twice a day for 30 minutes to see some progress. I even got a timer so I would be regimented about this.

Also love to hear anybody else's experience with dilators, what works and what doesn't.

Good luck and if you have any concerns just let me know!

Emily
(Anonymous) at 2013-06-25 12:27 (UTC) (Link)
Hey Emily,

I found out I had MRKH just last year, at 18 years of age.
I also live in Australia and considered surgery as an option but my doctor said that surgery for this condition isn't considered necessary anymore. He actually used to the perform surgery but hasn't done it for about 10 years now because of the success with dilators.
However he did say that sex was better for stretching because of the angle you can get. Whereas dilators are straight and not really made for women with our condition. You kind of need to push the dilator in and then curve it slightly up to follow the natural pathway of where your vagina would be. If you push in the wrong direction you kind of hit a road block and that's when you won't see much progress in length, which I discovered after 6 months of getting nowhere even though I'd been going so well before. Also if you do decide to have sex instead of using dilators (which I did, and let's face it, it's tons more enjoyable! ;)) just relax!! My doctor assured me that there's no way my man really could do any permanent damage and the reason it was hurting me is because I just wasn't relaxing. I was having sex at about 7cm length and trust me, if you go at your own pace, it gets better. By the way, 7cm is the length that I was stuck at for ages before I knew that I wasn't pushing in the right direction. After that I haven't kept track of what length I am because I haven't used a dilator since and sex is comfortable so there's no point anyway.

Sorry for being so up front! Hope it helped a bit though.
Wishing you all the best.

J xx
(Anonymous) at 2013-06-30 01:40 (UTC) (Link)
Hey I def understand everything you been thru. I was offered dials but I felt they wouldn't work. I'm glad to know u say they do. I found out when I was 17 I'm from the states and I'm 25 now. I have been embarrassed to talk about and scared to go to doctors thinking they'd look at me funny . Today I found out I'm not alone. It brings comfort but I'm still in the struggle. Today I want to take my life back and start living and not be so depressed about life . I have come to terms with the fact I won't be a mother. But I can't live myself knowing I could never have a normal sex life and atleast get some type of love. I feel like I was robbed of my womanhood.
2emily25 at 2013-10-02 10:13 (UTC) (Link)
Hi, thanks for sharing!
It's ok to go through periods of anger, depression or sadness. This is the normal stage of grief process for MRKH women. We've all been there and it does get better. Just remember, do what you need to do in your life, living with MRKH to feel good. Don't ever feel to have to explain yourself to anybody. It's ok to do what you need to FOR YOU! So you go girl, take your life back (believe me, I know, this takes a while)...but you can do it! For me sometimes, that means leaving family events early due to the masses of children ( I can only take them in small doses).

Let me know if you need any more support.

Emily
2emily25 at 2013-07-01 06:26 (UTC) (Link)
Thankyou so much everyone.
Hearing your stories has made me feel more positive above myself having this condition and the future! I'm loving the openness! Thankyou so much for the help with the dilators.

Other than my struggle to have a normal sex life, at the moment I feel surrounded by mothers and children. At age 28 I know it's only going to get harder as I get married and people start asking me..."when will you start a family?". Having MRKH has pushed me to ask the hard questions about motherhood and also question why people actually become parents. Ever since I found out that I couldn't bear my own children, I avoided children and babies like the plague. At this stage I even threw 2 baby showers for my sister and cousin...god that was hard...I kept having to excuse myself to the bathroom to wipe away the tears. Again, sometimes I feel that MRKH is a closet illness...no one ever really knew what I was thinking or feeling those days. I hated that what should have been a happy time was masked by my own sadness. When another friend announces to me she is pregnant, I plaster on a fake smile and act totally thrilled, while inside thinking 'not again'. I read a book called 'Two is enough- a couples guide to being childless by choice'. It has helped me to work through many issues and open myself up to a possible life without children. There is this quote in it "If your not a mother, then where do you fit into society? What do you have in common with all the other women. They don't really know what to do with you, because women are supposed to be mothers". Again, from being a little girl playing mothers and fathers, we are taught that this is the norm. That is why it is so hard for women with MRKH, because we are immediately placed into the minority. Going forward in my life I still don't know if my partner and I will adopt or pursue surrogacy or remain childless, but I know that whatever I choose it will be ok.

Does anyone have any advice for me. My family (sibling and inlaws, parents) wants to go away for a weekend together. I have 4 nephews under 3 years of age and I just cannot cope with having them around for a whole weekend. Everything will revolve around the children and I'm just not in a space to endure that. How can I explain to my family that I don't want to go without hurting them...

Emily XX
(Anonymous) at 2013-07-02 06:40 (UTC) (Link)
Hi Emily,
Sorry I forgot to introduce myself before in my reply I sent on the 29th June. My name is Ellie. I know how hard it must be going away with your family and having to deal with kids all weekend especially when you are feeling down. It's normal for you to feel this way. When we are feeling sad or depressed everything can affect us. Especially this issue that we face with MRKH. I am a school teacher and I work with kids all day. I guess working with kids all day everyday gives me some kind of satisfaction and also relief that I don't have to come home and deal with more kids at home. Yet I know it's a different feeling all together. I love kids so much and it breaks my heart knowing I can't give birth to any. However, I know that there is hope that one day I will have one through surrogacy or via adoption.. Regardless of all that I help and mind my niece and nephew and I do my best to show them my love like they are my own. The kids are innocent and don't understand our problem and feelings.
If you feel pressure and know you can't handle spending every hour with them then maybe you can excuse yourself for a few hours and do something without them.
Hope I was able to help you in some way and you have a good weekend.
Regards Ellie
(Anonymous) at 2013-07-02 20:48 (UTC) (Link)
I was 18 when I found out too. Myself, I only used the dilators. They were successful thankfully. My gyno said if you opt to do the surgery you still have to dilate to keep it stretched. I have heard from someone who is related to a girl our age that if you get surgery and the reconstructed vagina breaks, your done (but I haven't heard that directly from the doctor). When I dilated, at first, I was given the cream premarin. It helps to make it stretch easier.

I completely understand what you mean when you cry and you cry from the deepest part of your soul. I have done that so many many times. It is kind of funny--I have had similar thoughts--if someone has cancer or had a hysterectomy it can be talked about but this is hidden. As far as some comments by some women, the faster you accept it and get over it the easier it is (I've seen this similiar comment on a number of sites) I have to disagree. Personally I tried to 'get over it' but hiding it makes it worse. The truth is just like the stages of grief everyone goes at their own pace. I found once I got over the sex part I shelved MRKH so to speak until I was ready for having a baby. For me, I find it comes in waves, I can be ok with it all one day and the next I'm crying; you take one stop forward twos steps back then four forward and one step back.
(Anonymous) at 2013-07-02 21:00 (UTC) (Link)
I was 18 when I found out too. Myself, I only used the dilators. They were successful thankfully. My gyno said if you opt to do the surgery you still have to dilate to keep it stretched. I have heard from someone who is related to a girl our age that if you get surgery and the reconstructed vagina breaks, your done (but I haven't heard that directly from the doctor). When I dilated, at first, I was given the cream premarin. It helps to make it stretch easier.

I completely understand what you mean when you cry and you cry from the deepest part of your soul. I have done that so many many times. It is kind of funny--I have had similar thoughts--if someone has cancer or had a hysterectomy it can be talked about but this is hidden. As far as some comments by some women, the faster you accept it and get over it the easier it is (I've seen this similiar comment on a number of sites) I have to disagree. Personally I tried to 'get over it' but hiding it makes it worse. The truth is just like the stages of grief everyone goes at their own pace. I found once I got over the sex part I shelved MRKH so to speak until I was ready for having a baby. For me, I find it comes in waves, I can be ok with it all one day and the next I'm crying; you take one stop forward twos steps back then four forward and one step back.

To your July 1st comment:

I have had a similar situation. I could not go to my sister in law's baby shower (my brother's wife) as it was too emotional and I had a schedule conflict. I was told to 'get over it' by my sister. I did cry, but I kept my prior engagement. I was not going to be bullied into it, plus I already gave my word to the first person. You may have people think you should get over it or not sure how to respond your condition. If you really feel you cannot go through it as everyone has their breaking point, just tell them you need a break from it all. If they are not compassionate then that is their own issues. I am not deeply religious, but as the saying goes, 'Judge not, lest ye be judged.' I would hope your family would be compassionate and supportive. If they are not, I simply may say, "You were not born with this, you have not endured it, so how on earth could you judge me?" Of course use your own words or what moves you.

Good luck to you. I'd love to hear how it goes.
MRKH NORGE
MRKHNorge at 2013-09-19 12:02 (UTC) (Link)
Hi,
Does any of you want to share your story with the world? Im working for mrkhnorge - its a Norwegian MRKH organization, but I found that most mrkhgirls share the same feelings, thoughts and almost the same lack of support and help no matter what country they are from. Therefor im collecting MRKH stories from MRKH warriors all over the world.
Your story will be translated to Norwegian, but I will also put up and english version of it. You can choose if you want to be anonymous or not, what I would like to publish is your age and country .
Do u want to take part of this and share your story?

Plz contact me at lise@mrkhnorge.no :)

Wishing all my MRKH sisters a wonderful day :)

Lise
(Anonymous) at 2013-09-24 10:10 (UTC) (Link)
Hi Emily,
I'm from India. My name is Biju. First of all i like to encourage your fight. You know my girlfriend is also have the same problem which you have (MRKH syndrome). You are from Australia right, but as we(me and my girlfriend)are from India her life is far more difficult than you. Just because people over here are so religious and steadfast to their conventional thoughts. They don't like those people who do have any kind of abnormality, specially the girls. She is fighting against all the nemesis. I love to be with her holding her hand with the promise to stay with her forever. My e-mail id is- biju.naskar@gmail.com
it will be nice to get in touch with you. bye.take care.
2emily25 at 2013-10-02 10:04 (UTC) (Link)
Wow, that must be really hard for your girlfriend with the extra pressures of indian culture. My family are very religious Christians as well, but it's not really the same, being here in Australia. MRKH is such a hard burden to bear...but God wouldn't have given us more that we can bear! I know that it has made me a stronger person. So glad to hear from you. XX
Previous Entry