hey! just a question for women that have successfully finished their dilation journey, how long did it take you to get to a decent ideal length and width? i’m 20, and i have been dilating for a few weeks but i get demotivated and forget for a few days to a week. i really want to be able to experience sex while still in university. let me know how long it took you !

I thought it was interesting that all posts on here say they were diagnosed pretty late, but wondering if anyone else was as a baby?!

Hello everyone!

I’m a writer and a main character in my story has MRKH. I’ve become quite interested in learning about the syndrome outside of for writing purposes. I’ve done other research but I would love to hear more about it from people who have it. So, here are some things I was curious about:

1. I know that the diagnosis is painful for many (if not most) of the people who receive it. Not too sure how to word this question, but does it automatically affect people psychologically? This character doesn’t want to be a mother and isn’t very worried about being feminine. Would it still affect her mentally? By the way, I don’t know if that‘s a stereotype, sorry if it is. If it helps, the story has other characters with similar syndromes or intersex conditions and they’re all very different.

2. Does it affect your sex drive or sexual attraction? My immediate mental response is “lol no” based on what I’ve heard about similar conditions, but does it?

3. Just out of complete curiosity, do y’all still get discharge or arousal fluid, or just less than normal?

Thanks!

Hi all,

We are looking for our final participant for our study exploring family planning options for those with MRKH living in the UK (England, Wales, Scotland).

No matter where you are in your journey (NHS or private), even if you are in the early stages or have decided not to pursue fertility treatment, we would love to hear about your experiences!

Your input will be anonymous: https://ljmu.questionpro.eu/a/TakeSurvey?tt=SYGKgALSmcau0K%2B%2BoUaGfg%3D%3D&fbclid=IwY2xjawF_kddleHRuA2FlbQIxMQABHQ33GIhsU24tBeR3pcr_fagCDzwhh0jRzMJH0T8Te9Z5mnYD8vdrBqD4iw_aem_dFNzCL73t4BJLAz6jDQsEg

i (19F) was diagnosed at 15, and it took a really bad toll on my mental health. i developed depression because i thought it was a punishment from God. since it affected my view of my own femininity (i felt like i wasn't a real woman) i developed anorexia because i thought being as skinny as possible would make me daintier and more feminine. Im doing better now though i still struggle with my eating disorder. im 19 now and i want to have sex because i feel like im falling behind but im so embarrassed of the dilation process. my gynecologist recommended it because she said i could have a normal sized vagina once the treatment was done without needing any surgery. i feel lucky about that, but though i have the dilators and the ovulating cream im so embarrassed to do it. i tried it once but i would cry because of the emotional pain. i don't know how to fix it because i feel like im running out of time. does anyone struggle with the same thing or know how to fix it? i've tried three psychologists already but none helped

Hi everyone,

As part of my Doctorate in Health Psychology and in collaboration with the charity MRKH Connect, I am recruiting individuals with MRKH to participate in my study exploring family planning and fertility options.

If you have MRKH and live in the UK then we would love to hear about your experiences - no matter where you are in your journey (NHS or private).

Please note that this is a confidential study and your input will be anonymised to protect your identity and any personal details you share (clinic names, etc).

You can find out more and apply to join the study here: https://mrkhconnect.co.uk/new-research-participants-requested-on-the-impact-of-accessing-fertility-treatment-in-the-uk/

Hi everyone, I have posted this link before but I have recently made new updates to the discord server so I wanted to share the resource again. My name is Anna. I was diagnosed with MRKH when I was 17, and now, at 22, I’ve been on a journey of learning, growing, and finding support. Through these years, I’ve realized how important it is to have a community that truly understands the unique experiences of living with MRKH. That’s why I’ve decided to create a dedicated MRKH Discord server—to provide a space for more immediate and interactive support. I’ve been a part of various online communities, but I noticed a gap when it came to finding a Discord group specifically for MRKH. While there are wonderful resources such as this subreddit, I know some of us prefer the format and features of Discord. I believe having multiple platforms helps us reach and support more people, meeting them where they’re most comfortable. The Discord server (link: https://discord.gg/CJ4745y5zF) has been active for about four months by now, and we’ve already grown to 30+ members! We’ve had some great conversations, and it’s clear that there’s a need for a space like this. I’m excited to keep building connections and raising awareness about MRKH together. I hope I see you there :)) - Anna.

Hi everyone I have been doing a lot of research on MRKH but i’m struggling to find anyone with a similar situation to me. I don’t know if this post might be triggering as i have a small chance of pregnancy, so i’m sorry if it is. i’ve been rejected from support groups for the reason that i still have a uterus but it’s not functional so i don’t know where i fit in. i’m 16 and i got diagnosed with MRKH when I was 12. I had severe period cramps with no blood and after 3 months of extreme pain I was rushed to hospital. No one really understood it and i had to have a surgery as they thought it was something else. After a lot of MRIs and scans I was told I have MRKH. For me though, i still have a uterus (a non-functioning one that is small and underdeveloped and not connected to my cervix) and the blood filled it up with no way to release. I was told to try dilation but I have anxiety and an overactive pelvic floor and it’s just too hard for me right now. I am on birth control and that stops the pain but it causes me to have many other issues like weight gain, mental health etc that i can’t change. I was wondering if anyone else still have a uterus. i guess i just want some support/advice and i wondered what you think: does it seem worth it to get it removed because my doctors say that i have a small chance of carrying a child (highly unlikely) but they can only do the surgery once i’m ready to get pregnant, I don’t know if i can live my life until im 30 on a horrible birth control and in pain. its very overwhelming and i feel like a shitty woman and i’m scared for the future, any advice?

so i think i have a yeast infection but i also am not sure because it would be my first time with anything like this. im terrified to go to a local clinic or planned parenthood because i know that not many doctors are informed of mrkh and ive had too many traumatic experiences with uninformed doctors. just wondering how to proceed and where to go thanks :)

Hello MRKH community ☺️☺️👋 36 F here. I was referred to Pelvic floor PT to address vaginal tightness. I was born with a short vagina, and it is not connected to a cervix. Intercourse hurts until my vagina can form to my partner’s size. I also experience leakage when I sneeze or laugh too hard. Is there anyone with similar circumstances that can attest to positive results?

I appreciate any information available.

Curious to know if anyone here had tried hormone replace therapy to perhaps grow their uterus? I found an article online (hope I’m allowed to share it) where a patient was misdiagnosed and after 18 months of HRT developed a rudimentary uterus. It mentions if continuation for some years, it could continue to grow. It also highlights the importance of following a structured protocol for investigating and diagnosing patients which is useful to know.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6935711/

hi,

question: do people with MRKH automatically cannot orgasm through penetration?

im 37f. not officially diagnosed with MRKH but my boyfriend then (now husband) researched about my condition and MRKH is the closest. scared to go back to doctors as 1. not comfortable of opening up my legs for them to look at my VV. 2. they seem to be clueless too.

for me, penetration is almost always painful, just have few instances where it felt great but i always get orgasms from clit.

I recently had my very first consultation for IVF at a fertility clinic. The expectation was to complete a patient history form that would give them insight into your medical background. I completed the form promptly (as much as I could, leaving out the info on periods/cycle dates/pregnancies etc ) I mentioned MRKH and that I was born without a uterus, thus not having 'periods' so they would know why the form was not 'fully complete'

Now comes my first appointment, right after walking in, the doctor first mentions that I did not complete the form fully and then proceeds to ask if I have been pregnant before. For a few seconds, i was dumbfounded. I honestly thought she would read this form just prior to meeting with us- maybe I expected too much :( it was a little upsetting. I then explained my condition, and the doctor then googles it on the computer screen, as it has been a long time since she has seen this.... Now i feel like i am probably not in the best hands in terms of my future in IVF... i feel nervous.

I have a transvaginal ultrasound coming up and i am ever so terrified. I don't know if it will be painful or if they will be able to do this.

I don't know how to feel about this anymore. I want to be so hopeful for IVF, but i am so scared now and feel like this might take a realllllly long time.... anyone else felt like this? Please tell me I am not alone.

i’m 22 and i haven’t had a relationship because of MRKH and intimacy, I finally told a guy I like about it and how i won’t be able to have sex until dilation and now i’m so scared he’s gonna block me

Hi everyone,

As part of my Professional Doctorate in Health Psychology, I am looking for 6+ individuals with MRKH to participate in my study exploring fertility inequality in the UK.

I am completing this research in partnership with MRKH Connect - we want to hear your personal experiences of accessing fertility treatment via the NHS.

You can find out more here: https://mrkhconnect.co.uk/new-research-participants-requested-on-the-impact-of-accessing-fertility-treatment-in-the-uk/

Does vaginal length increases in MRKH women when they are aroused?

Context: I read it that the vagina can be elongated by 3 to 4 cm during sexual arousal.

I'm in a relationship with this girl, she told me early on that she has MRKH, I didn’t know what it was at first but then I did my research.

I assured her that I don't think any less of her because of this, in fact she's even more special to me now.

But one thought still lingers in my mind, I can't accept not having children, no matter what way I look at it, I want to have kids, at one point, my own kids not adoption.

I've read that it's possible through surrogacy, how successful is it? She still has regular functioning ovaries and eggs, realistically there should be a high enough chance if we keep trying? It might not be cheap, and it might take time, but if it means we can have our own kids then it will all be worth it to me.

Please tell me your thoughts, the main bad thing people see with MRKH is the inability to have children, but from what I've read it's not impossible?

I'm currently in the process of getting diagnosed with MRKH and if I have it my Mother is planning to donate her uterus by the time I'm 21 because she'll be 50 by then and I want to have children by my mid 20s and I have a questions.

How long can the uterus stay in me? How can I keep it healthy? would sex change?

I f20 recently got diagnosed lol(like a month ago). After the initial week of finding out things just kind of went back to normal. But like sometimes i just sit and think that like there are so many things that woman are told about their bodies through medicine, society, the media, etc. and like it’s left me feeling so hollow. Like bc of MRKH i’ll never be enough of a woman and i think that feeling has been the worst through it all. I was wondering do any of you feel this type of way? I am currently working through it with my therapist, but i just hate feeling so alone with this way of thinking.

I have been thinking for a long time that the fact that I have MRKH did not affect me in my day-to-day life after the first years but I think I have never connected my struggles to it.

For clarity; I have been diagnosed since 16 (rn 24) and after three years of shame of my diagnose and the break-up with my boyfriend from them, I thought I should start dilation to create a vagina. It was horrible; I felt so ashamed to do it but on the other hand really wanted to be normal so no one would ever notice anymore that I would have this issue. I managed to create more depth and got into a relationship as well. From then on I have always assumed that MRKH did not affect me anymore, as I was normal for the outside world and I could provide men penetration if they would like that. The talk about children remained hard, but in my mind it did not feel like a problem to worry for now since I do not want kids. However, over the years I have always had issues with sex, especially my libido. After a few months my libido just crashes and I feel pressured to still have sex, even if my partner does not force me at all. I thought in the beginning this was due to the partners that I chose (which made a big deal about it). But now I have a relationship with a great guy who is so patient, and still I feel so much pressure. There is this feeling within me that if I cannot give a man what he wants (sex), then there is nothing else about me that would interest them in having something to do with me. I realized this because even though how many times my bf tells me he does not want to force me and just wants me to feel okay about doing stuff, I still hear this voice in my head that I am worthless if I do not want to have sex, which repulses me even more because I feel like an object. I do not know what to do with this and feel kind of lost. I think this is because of the whole reason why I wanted to start dilation, because only then people would care to love me or something. Idk Is there anyone that maybe has experienced the same emotions?

would “minimal vaginal tissue” mean i have an opening? i was diagnosed in 2016 and haven’t heard anything else from the doctors to do with sex and stuff, I want to start dilation by myself

I'm turning 17 on the 14th of September and I never had a period before. I live in Ireland so my Mam and I went to the rotunda and they suspect I have MRKH and explained it to me and I felt so scared I didn't show it on my face till my mam and I got out. I feel terrified knowing I might never be able to fully enjoy sex and it makes me so scared getting into a relationship or having sex at all. It also makes me so upset that I can't have a baby or have a period and never feel like a truly normal I feel so disgusted and ashamed and even worse that I can't do anything about and this will effect me forever. I'm getting an MRI scan and my anxiety is building up and this really effecting especially now because I'm in 6th year of secondary school and I have my leaving cert which is a really important exam and this MRKH thing is making school so hard for me and I dont know how I'll get through this school year it feels impossible. I'm getting comfort from my family but that doesn't really help at all because they don't understand how I feel. Please help me out

Any tips to deal with hormonal acne with MRKH? I feel like I have a sterile and great facial routine as I have no other acne on my face besides on my jaw, chin, and lower part of my face, so it’s not my products causing these issues. It’s not like I’m going to go on any type of birth control since I don’t need to obviously.

What have you guys done to mitigate the factors of hormonal acne? I feel at a loss & it takes a toll on my confidence having clusters of acne on my face.

Hi I'm 15 and was just diagnosed. From what my mom has told me I'm getting referred to get a cervix MRI and a transvaginal ultrasound. I'm terrified of the transvaginal ultrasound because even a tampon hurts. Because of how mine is it looks to be pushing on my bone which are pushing on my hip bones, which makes it harder for me to walk even short distances or stand still. Like I'll fall and won't be able to get up.

My mom and her friend in med school want to put me in physical therapy and won't even let me get a cane. The MRKH isn't the only thing that makes it hard for me to walk, I also have chronic gastritis and show symptoms for POTS.

We have no clue how no one has seen this because this was my third pelvic ultrasound. Also I basically have 2 unteruses that are partially fused and each side has its own menstrual cycle.

I feel like I finally have an answer for my pain yet no one is listening to me about my pain and mobility problems.

Hi all, So I was diagnosed with Mrkh at 15 and it was confirmed with an exam at 17. I’m 24 now and am struggling with lots of things that I thought did not bother me. I know I am a woman but struggling with lots surrounding the “normal” woman experience of getting a period, having a baby, etc. I don’t know why but I feel like these are big topics of conversation whenever I’m around women. I never feel like I fit in. I don’t exactly feel like a guy either but feel I’m neither? I also am exploring and finding I feel sad that I had no care/inclination at the time of diagnosis about not being able to have sex until I dilated or had the surgery. Background: when I was 19 I started dating the man I’m married to and started dilating around then because it was the first time I was into a guy. I’m now finding myself feeling lost and confused and sad about realizing that I never found people just sexually attractive. I already feel not “normal” because of my mrkh and now these feelings are popping up. I’m uncomfortable talking about sex and these issues. I think I may be demisexual and honestly it just saddens me that I feel like no sexual part of being a woman for me is normal. Which is in turn making me feel like I’m non binary but I am just overwhelmed by all of this and I tried to share some of this with my husband but he doesn’t understand, which makes sense. Anyone else feel similar or have any advice or tips on how to work through all of this.

Hi, I got diagnosed when I was 14 and they said to contact them or something when I want to be sexually active. I told my GP and they referred me to the gynaecologist in my city, however they said they were not able to handle a case like MRKH and referred me to the place where i got my diagnosis in London, however it’s been two years and i’ve received no contact at all, and I want to be in a relationship right now so idk what to do

Hey Everyone, this is my first time posting on reddit, but I've had it for a while and I love referring to it when I have specific questions. I was diagnosed with MRKH back in 2012 or 2013 my freshman year of highschool. I am now 27. At about age 19 or 20, my tummy started to become increasingly sensitive, and it has just continued as the years go on. I used to be able to eat everything with no issues, but I first had to cut out dairy, then alcohol, then all meat except fish, then it was super acidic foods, spicy foods, and most recently gluten. Stay with me guys!

I was seeing my gastro very regularly and he ran a bunch of tests on me and could not diagnose me with any specifc tummy things. I hate to say but I kinda gave up on going back. It's so triggering sometimes to go to these docs appts back to back, just for them to shrug me off. I dealt with this alot while trying to get diagnosed with MRKH and I still have alot of unresolved medical trauma and anxiety surrounding docs offices.

Recently I was also diagnosed with an overactive pelvic floor triggered by stress and anxiety. Most likely due to my constant stress over wtf is going on with my tummy. Regardless, I am stuck in this cycle now, when I'm having tummy issues I get upset and anxious and depressed and it triggers my pelvic floor. But if I don't know what is hurting my tummy, HOW do I fix it??

SO sorry for the long read. Moral of the story, I even cut out marijuana, I thought I was self medicating but now I'm not sure. I don't think I'm mentally strong enough to keep going to docs after docs tryna find a diagnosis, and trying not to have panic attacks. My diet is the bare minimum, and my love language is eating and food, so my mental health has been on a scary decline all year.

I don't have a bunch of money, and right now I am out of work due to pain and anxiety, so I'm trying to get financial assistance through Prisma Health so I can at least continue seeing a therapist.

When I have tummy pain, I also feel it in my back, I get nauseous and irritable. I feel exhausted physically and mentally and I just cry and cry.

Not tryna be a debbie downer I promise. I feel like I'm a burden on everyone and everything. Including myself. I feel a lil stuck and I just need some advice and maybe insight, and I wanna know if ANYONE has had anything similar to this so I don't feel so alone?

I've never had a conversation with anyone else with MRKH, I've been really yearning to get to know others who understand my struggle.

Thank you so much in advance!

Hi everyone. like in the title i recently got diagnosed with MRKH this past week and have never heard of it before. While my doctor went over some stuff with me I was wondering if anyone had any links to any good articles that could introduce/help me understand this a bit more bc it is a little bit of a shock to me and i’m still learning to grasp the reality of it.

Hi everyone, on thursday I had a transvaginal ultrasound and I had immense pain afterwards is this normal for us MRKHers? I also had a urodynamic procedure on friday and now I’m having a hard time determining what is causing my pain. I’m practically bedridden and taking lots of tylenol and I’ve got a heat pack going.

Side note: should people with MRKH even get transvaginal ultrasounds due to our different anatomy? They asked me to insert the “wand” and I did. I said that I inserted it as far as it could comfortably go and they immediately pushed it further…

Hello So as the title says my gynaecologist said something thay doesnt sit right with me

So my question to her was

"I'm wondering where I have a vaginal opening, and if u can confirm that for me?"

I followed this question up with

"It hurts when I try to figure this out myself, Is it possible if u can take a look and give me some advice on how to proceed"

She said at first "You'll only know if a man tries to insert himself into you"

and I was not very happy with that answer

I asked if it was possible to do a visual examination and confirm

She did confirm it with a visual examination

And then she followed it up with saying that Ill properly find out the depth and what not when im sexually active with a man. Unless I want to go into surgery and figure it out that way.

I have had a think about it, and i'm not sure that answer sits right with me.

So now I'm in this situation of whether I find a new gynacologist (this is already my 2nd one) or just wait it out and find out when im sexually active with a man or should I have changed the way I ask my questions and queries to the gynaecologist.

Just some extra context: I had an MRI which said that I have a no uterus or cervix but I have part of the vagina, I just wanted more clarity on this and what this would mean for me in the future.