Intervjuer

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A story

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Vagina operation -Sahlgrenska Uni. Hospital

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Just a little note that can change someones life

Do you have MRKH? Did you recently got diagnosed? Or maybe you are the mother, father or maybe a sibling of a girl with MRKH? Maybe a friend or a doctor of a girl with MRKH? Keep reading…you might not be able to give her a baby, or a normal vagina…but you can make a difference!

For the girl with MRKH:

I am writing this for you…did u recently found out you have MRKH? Or have you known it for a while? It doesn’t matter…one of the most important things with MRKH is talking and having contact with other girls with MRKH. It’s important that you don’t think that your alone, because your NOT! even though it sometimes can feel like that. I didn’t meet other girls with MRKH until 10 years after I was diagnosed, and damn…I’m angry for not having the possibility to connect with others. I think I would feel more ”normal” if I could have shared my feelings, thoughts and questions with someone in the same situation. The meeting with the other girls have given me another perspective on life and more understanding for my body. I feel less alone, and I feel that I ”belong” to a group. With some of them I talk almost every day, with others I talk once every month or less than that. Sometimes we meet up and sometimes I just fallow them on blogs or facebook.

Getting in touch initially was hard, I didn’t know what to say and didn’t know how open I could be. Don’t be afraid of contacting others with MRKH, because I can promise you that it will help you alot.  At first it’s hard to understand and admit that you have MRKH to someone else. The first step is pain, you wanna draw back and you want to just forget it. No matter how hard it is don’t give up! In the long run it’s going to get easier. I did the mistake of isolating myself from MRKH, putting MRKH in a box and closing it. But reality will come to you one day. It will catch up with you if you don’t deal with it and you are going to get broken. Soooo, once again, DON’T make my mistake!

We all have different backgrounds, different cultures, different hobby, but we all share something that no one else can ever understand. Together we can be stronger, together we can hold each others hands through the ups and downs.

Some sweet and short advises   🙂

  • Contact other girls with MRKH (facebook, blogs, yahoo group)
  • Ask your doctor for help with finding doctors within the field of MRKH, or maybe they can help you finding other girls near you with MRKH. 
  • Don’t jump into a vaginal surgery just after your diagnosed! Do it when you’re in a more mature age and when you understand who you are and what MRKH is.
  • I know that in a young age it’s hard to understand a psychologist, what are they going to do for me? In the beginning it’s hard to understand what you should feel, how you should act and understand that something is wrong with you. Why should I talk to someone (doctor, psychologist, nurse) that doesn’t even know what MRKH is? why should I inform them about my problems, isn’t that their job? ”I’m only 17 years old, what do you mean I can’t have babies?  ”I havent even kissed a guy yet, so why do you talk about sex?” These are two of many questions going through your head.

For the person that know someone with MRKH:

I understand that it is difficult for everyone around us to talk about MRKH. A mother, father or a sibling may feel powerless. You do not know how to talk about MRKH, what to ask, how to be comforting and so on.

Some sweet and short advises   🙂

  • DON’T ever pretend that the problem doesn’t exist.
  • In my situation I wish that my family and boyfriends would have asked me…how do you feel? Whats the hardest part? and 100000 of others questions. To be silent is the worst thing. You don’t feel accepted, you feel like you have to hide it and pretend that your someone else with other feelings.
  • I wish that the health care would somehow forced me to therapy at a young age. I wish someone on this earth would have forced themselves on the little girl inside of me. What did I know about therapy at 17 or what did I know about life?
  • Show acceptance and opening towards everything about MRKH.
  • Don’t say you understand, because you will NEVER do unless you have MRKH.
  • Don’t tell me that I can adopt and everything is going to be ok, because it will never be ok…MRKH is a never-ending story. You get reminded every day!! and it even get’s harder the older you get, the more people get married, have babies…sooo please, help the girl with MRKH at a young age, this will make her stronger for the upcoming hard parts in life.
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MRKH sites:

http://www.neovagina.de/index.php?lang=en&page=&sub=&s=somm4jnhit9u9mnh0ac0jhib36

http://www.mrkh.org

http://www.beautifulyoumrkh.org/Join_.html

http://www.lakartidningen.se/old/content_0446/pdf/3717_3718.pdf

http://humrep.oxfordjournals.org/content/23/5/1226.full.pdf

http://www.yahoogroups.com/group/mrkh-grrls

http://childrenshospitalblog.org/childrens-to-host-mrkh-conference/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+childrenshospitalblog+%28Thriving%2C+Children%27s+Hospital+Boston%27s+pediatric+health+blog%29

http://www.girlsaskguys.com/Health-Questions/586592-what-do-you-think-about-girls-with-mrkh.html

http://everythingdazzles.hubpages.com/hub/Mayer-Rokitansky-Kuster-Hauser-Syndrome

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1368996/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1832178/pdf/1750-1172-2-13.pdf

http://www.mrkh.org.uk/secure/your_call.html

MRKH & Psychology:

http://imsear.hellis.org/bitstream/123456789/143467/1/jiafm2012v34i1p86.pdf

Swedish blogs:

http://metrobloggen.se/utanbarn/en_nystart_av_livet/

http://sawdust.blogg.se

http://ettlivmedmrkh.devote.se

http://mittlivmedmrkh.wordpress.com

http://livetmedmrkh.blogspot.se

http://mrkh2.blogspot.se

English blogs:

http://mrkhmusings.wordpress.com/category/mrkh/

http://mrkhcanada.wordpress.com/about/

http://mrkh.weebly.com/index.html

http://www.tumblr.com/tagged/mrkh?before=25

http://livingwithmrkh.blogspot.se

Facebook & Youtube: 

MRKH Sweden

MRKH Norge

MRKH syndrome

MRKH support and awareness

and many more!!

Just write MRKH on youtube!

Children (uterustransplanation, adoption, surrogacy):

http://www.uterustransplantation.se/en/patient/idea-uterus-transplantation

http://www.surrogat.info/sv/Indien/

http://www.intersexinitiative.org/news/000131.html

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