Dear Beautiful Girl,
I am writing this note specifically to you to let you know that you are not alone. We MRKHers are a silent but strong community. You are undoubtably going through a lot of personal challenges right now and people around you don't understand. The testing can feel brutal, but know that you are not alone.
Be nice to your parents. Particularly mom, because she's struggling just as you are. No, it is not her fault, and I am sure you know that already. Your dad is probably not going to know what to say. That's dad.
One of the things I struggled with at diagnosis the most was the feeling of being a part of a woman. We are whole, and you need to know that. If you intend on havng sexual intercourse at some point in your life (there are some that don't), I recommend getting your treatment done as soon as you can. This way, while you don't have the option to have kids, you do have the option to have sex if you want. It's a gift you can give to yourself.
For your treatment, you are going to have to find a doctor who has dealt with MRKH. Ask that doctor for another family practitioner in your home area if yours does not understand MRKH and doesn't empathize with you. You have every right to be supported by your doctor.
If you are dreaming of your own family, you can have one! There are lots of options for us. You may even have a loving sister who is willing to carry your child one day (if you have ovaries). Remember that even those with all of the "equipment" struggle with conception too. We express our love of life in so many ways; children are one awesome option.
Know that you are on a life journey, just like everyone else. You will and can make it through!
I am writing this note specifically to you to let you know that you are not alone. We MRKHers are a silent but strong community. You are undoubtably going through a lot of personal challenges right now and people around you don't understand. The testing can feel brutal, but know that you are not alone.
Be nice to your parents. Particularly mom, because she's struggling just as you are. No, it is not her fault, and I am sure you know that already. Your dad is probably not going to know what to say. That's dad.
One of the things I struggled with at diagnosis the most was the feeling of being a part of a woman. We are whole, and you need to know that. If you intend on havng sexual intercourse at some point in your life (there are some that don't), I recommend getting your treatment done as soon as you can. This way, while you don't have the option to have kids, you do have the option to have sex if you want. It's a gift you can give to yourself.
For your treatment, you are going to have to find a doctor who has dealt with MRKH. Ask that doctor for another family practitioner in your home area if yours does not understand MRKH and doesn't empathize with you. You have every right to be supported by your doctor.
If you are dreaming of your own family, you can have one! There are lots of options for us. You may even have a loving sister who is willing to carry your child one day (if you have ovaries). Remember that even those with all of the "equipment" struggle with conception too. We express our love of life in so many ways; children are one awesome option.
Know that you are on a life journey, just like everyone else. You will and can make it through!
Thank you very much for this! It really helped me to hear that I am not alone.
ReplyDeleteI am 18 year old and I found out three weeks ago that I have MRKH syndrome and I feel really confused. I am so grateful that you share your experiences and help others! THANK YOU!
I am now 18 years old but was diagnosed about a year and a half ago. It was very overwelming at first going from doctors telling me I shouldn't worry about not starting my period yet to you will never have one. Being a senior in high school right now, my number one problem is not feeling like I fit in with the other girls. The most awkward thing I have had to deal with was being asked all the time by the girls that sat at my table group last year in English class (that would openly talk about their own all the time), "What is your period like?". I wouldn't respond but would just casually some how laugh it off. It really upset me that they could talk openly and freely about their bodies and I couldn't. All the time I wonder what other's would think if they new the truth about me. I saw my two younger sisters start their periods before I was even diagnosed with mrkh. At that piont I kind of new there was something wrong with me. I have never had a boyfriend before (I've been asked out but both times I new they just wouldn't work) and am a little nervous too but deep down in side I really wish I had one because I want to feel normal and have someone that likes me back. The great thing is that college is just right down the corner.
ReplyDeleteI really enjoyed reading your blog! Looking back at when I was first diagnosed I wish that someone would have had a blog out there like yours.
Thank You!!!!!!!!!!!!!! :)
Thank you for your blog. I was 16 when I first found out but I just ignored it as I didn't think it was that big of deal- yey no periods for me I heard they were awful anyways and no kids that sucks but I can always adopt, have a surrogate, or even marry someone that already has kids. Then I was told that sex may be painful but I was just thinking how bad can it really be I was a virgin then so I really didn't know what to expect. Now I'm 21 and MRKH starts to affect me for I am quite sexually active with my new boyfriend but every time it freaken hurts and I don't know what to do. Plus my boyfriend doesn't know I have MRKH and I can tell he gets frustrated its not going all the way in and he obviously thinks its his fault I want to say something but I can't and I am also now considering surgery. I don't know. I never had anyone to talk to about this before.
ReplyDeleteHi I'm Alice, I also have MRKH and this is my advice, you obviously dont have to take it but I thought it might help. If you have been with your boyfriend a while and he is getting frustrated about your sex life, maybe its time to explain to him that its neither of your faults. Its not fair to either of you to be uncomfortable. He will either understand or not, but if he doesn't accept you for who you are thats not fair, but obviously hes not the one for you. I can personally say that the surgery wasn't that unbearable, the week in the hospital was bad, but that's all there was, it wasn't particularly painful or anything. I hope you find the answers you are looking for :)
DeleteHi, thank you for sharing your experience. I recently started dilation (it's been 2 weeks now) because the doctors never figured out what "it" was. When it was finally diagnosed I was told surgery was the only option considering my age, however when I consulted a few other doctors they suggested that I start with dilation as it works in most of the cases. I agree that it requires a lot of discipline to dilate everyday specially if you are new to it. I really appreciate you taking the initiative and sharing you experiences specially because there is not enough information available over the internet and it's difficult to talk about. Thanks again. :)
ReplyDeleteI forgot to mention in my initial post I am 28.
DeleteHi, my name is Renee. I just turned 17. I was diagnosed with MRKH just a week ago. I am in the mids of all the research. Just a couple days ago I found out my kidney's looked fine. I came across this site. I love the letter you wrote! I think that whenever I feel down I can look at it and realize i am not alone, and that it's not the end of the world. Anyone have any tips on MRKH?
ReplyDeleteTreat it while you are young, it will help with the emotions when you are older. You're not alone at all!
ReplyDeleteHi it's been soo helpful and brilliant to read your letter. Gives hope, and it's exciting to see other girls discuss this because for a slight second I felt like one of the girls. I'm only 17 and found out last year that I have mrkh. It's all going very slow however, I'm still waiting for my referral but just been told my kidneys are okay. I just wanted to ask if anyone has any tips when it comes to boyfriends. I'm only young and Id like one lol, sounds so stupid :') but yeah I'm just scared because obviously at this age people are losing their virginity, and it feels like I can't be with a guy without disappointing him. I keep pushing guys I like away and it's just really knocking me down now. I'm rambling I know but this is really annoying :/ thank you!
ReplyDeleteI was diagnosed in late June with MRKH syndrome. I was born without a uterus, cervix, and only one kidney. Being 17, it is a lot to take in at first. I felt like I wasn't a woman, that my chances at having a family in the future were ruined, and that my body did me a disservice. I still feel a twinge of sadness and jealousy in my gut when I see a woman who is pregnant or a newborn baby. I personally feel that the key of coping with this syndrome is surrounding yourself with supportive friends who you can trust, your family, and not letting your own negative thoughts drown out the positives in your life. I very recently started the dilatation process. I am honestly not sure if I'm comfortable with it yet seeing as I am not sexually active at the moment and do not plan to be for quite a while. If anyone has any tips for staying motivated during this process, please share!
ReplyDelete