I am very happy to have to. No pregnancy & period pains and its side effects. I do not have to suffer like other woman with “ healthy wombs “. Its strange that woman cry - when they have womb and also when they do not have one. Also adoption is nice and world is overly populated to bring child through ivfs and suurogacy ( where mostly child are not even born healthy ). Blessings to all beautiful woman.
I just discovered my MRKH diagnosis this week. I am turning 63 on Saturday. It has been quite the journey and it is amazing to hear others identical stories to mine. I was very good at faking everything through high school with my friends. My story was a bit torturous with a quack for a doctor, but my life now is happy and full. I will continue to learn and read and hear stories. I will also mention my diagnosis if I ever visit a gynecologist in my future.
You are not alone sister! I was also diagnosed with such condition at 16yrs of age. I was shocked and depressed but lukcly enough your story calm me down.
The pain of being unrecognized, unseen, unacknowledged -- for whatever reason -- is summed up succinctly by a woman wise beyond her tender years: Understand this if you understand nothing: it is a powerful thing to be seen -- Akwaeke Emezi
Alone.....such a terrible condition added to my diagnosis . AND how wonderful was the power of connection, of community with others who live in my world.
One of my conditions occurs in 1 in 100,000 people. In real life I would never meet and share with others who really know what life is like for me. My immune deficiency requires to me to have a 4 hour infusion of IVIG every four weeks, for the rest of my life.
Thank god I was supported every step of the way by others, around the world, who knew my fear and uncertainty. Now, 8 years later I can do this for others.
The on-line forums sponsored by the foundations dedicated give us support and to sponsor research seem like a miracle to those who first find them.
I have found care and compassion, vital information, and the ability to laugh through tears. And I am humbled to be able to offer my support to others.
1
I too was born with this condition. As a teenager, I felt like a fraud because of it. I had the surgery. Relationships, even a marriage, dissolved because of my inability to conceive and bear. I hid my tears whenever a friend or relative announced a pregnancy. For years, I went through it alone, unconnected to anyone else born this way. Early menopause meant I could not avail myself of in-vitro and surrogacy. I too am now too old for uterine transplants.
Beautiful You MRKH Foundation and the online support networks they've helped build have given me a community and a voice. I'm grateful to them for providing that safe space, that I no longer have to perform alone in my head my very own Missing Vagina Monologue.
More, the notion that gender and sex are on a spectrum has given me a joy in my physicality that I did not have for 58 of my 61 years. I am complete in myself, regardless of what parts may or may not be "missing". If others have not recognized it in the past, that is their problem. It is no longer mine.
29
@ESH what surgery did you have? My daughter is newly diagnosed this week and I’m lost!
@Kjohns19 usually its cure is hysterectomy.
I turned 16 last month and I was diagnosed last week. After years of walking with questions I finally asked my mother to see a gynecologist. The day before my appointment I googled what my diagnosis could possibly be and Mrkh was one of them but i didn’t consider it being the most likely option. I walked into the hospital very positive that this problem could be fixed and it turned out to be exactly the thing I do not wish upon anybody. They always say that doctors are very chatty (Mostly to comfort their patients), and If they don’t speak it’s because something is seriously wrong. While my gynecologist was performing an ultrasound she was completely silent, that already said enough for me and I started tearing up. When she finally diagnosed me I broke down completely. My family knows me as the girl who never cries but that day I cried and I didn’t stop crying. I feel devastated and ashamed, I’ve always struggled with my self image but this destroyed my self esteem completely. I do not feel normal. I feel so alone. I have nobody in my surroundings who could possibly understand what I’m experiencing now and how I feel. I cannot blame anyone or anything for this. That might be the worst thing about it, it has no trigger, it has no cause, I just happens. But out of all people...it happened to me. I can only cry, I can’t sleep, I can’t eat. I came here to share my story. To all the girls who’ve recently been diagnosed, I know what you are going through and I’m sorry.
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@C you are not alone. There is a Facebook group called MRKH experiences, advice and support. If you are on the platform, come find us. You have sisters all around the world, and we are here for you, always.
35
I'm so sorry you're going through this. You are not alone. There's a Reddit sub and Discord server. It may help to talk with others.
9
I was told at 19. No name, just the facts. At 25 I was told if was never going happen in my lifetime. Finding my community online was a major blessings.
10
I'd more say I cannot imagine the thoughness ladies with mrkh have to face every day!! This makes me sad for them, for that they were born with the issue and have no other way but live with it somehow..The thing's not chosen..not wanted..not expected..I'm sure the main concern though is about having kids..Though the symptoms may be too uncomfortable too - like abdominal pains or sceletal problems..Still the main question remains 'How do I have kids?right?' Blessed we are to have all those ART technologies around! Be it IVF or surrogacy - all are aimed at one and the same - bringing a kid to a loving family. I read quite often ladies suffer 2nd type mrkh which I believe is horrible. Women are born without wombs or have other malformations which make carrying a baby on the own just impossible..Surrogacy turns out to be the only way to beat infertility in such cases.
@Rebecca, how is your friend doing? Has she ever considered surrogacy? How's your research going?
1
@Middie
Yes, some women and young girls can also have kidney involvement as well as other organs involved.
1
I believe such articles are really helpful. Firstly, I've never thought I'd come to places like this and ask people on how I can help my friend to beat the misery she feels now. It's about her MRKH diagnosis, which, she says, causes her so much emotional pain and ater reading all these articles I do believe her so much. Not so much time ago she met her Mr Right and they both deided to create a family. I think she wasn't too open with him them about her ''special condition'' But after she finlly told him, seems he understood and wasn't angry or sth like that. He just said they have to look for the ways out TOGETHER. This story made my heart melt. Now I'm sure she's in the best hands ever. As far as I know, they're currently looking onto possible med help, ART options. But my friend's husband insists more on surrogacy. See, I don't know the details. I don't want make her upset with any sorts of questions..From what I've read there are 2 types, both are challenging, one should be strong to deal with them. I came here to talk to you, lovely people, and ask for suggestions. How can I support and not intrude much into their lives? I just wanna be helpful. And please, anybody, who've been through ART options, do share your thoughts/experiences if it's ok to ask. My heart goes for you. God bless you all, you must be brave people.
5
I'm 31 and was diagnosed at 15. I'm still angry. Reading this made me angry. That's all.
1
@L. I do understand!!!! I hope that as your life proceeds you will find some ways to make peace. Thank you for your honesty!
2
@L Omg, dear that's tough to hear. As I've told earlier, this is hard even to imagine the amount of pain you're going through! I'm so sorry the issue has turned your life upside down..so unfair! I know a young lady with MRKH, who's currently struggling to have a little one..She's using mitochondrial donation with surrogacy..Sounds complicated but seems she really leans upon it..I'm hoping you can still produce healthy eggs, so that you could use them when time comes..God bless you, dear!
4
@L
You are very brave to be so honest. I hope you find someone in the support groups that you can relate to.
Dear Susan, Your story is so important not only for those who have M.R.K.H. but for all who suffer with conditions that they feel must be hidden. Your message of the power and healing properties of community speaks to all who suffer from differences. Thank you for putting yourself out there for the benefit of others.
17
@Anne Shollar, a good post of yours. Thank you. This is so much important for ladies facing MRKH to know they aren't alone. Girls with MRKH have normal ovaries and fallopian tubes. From what I've read, there are 2 types of the condition. The latter is more serious. In this type the abnormal development of the uterus and vagina may be accompanied by the deffects in the fallopian tubes. As well as the kidneys and spine..The kind lady I've known all my life faces MRKH. Currently she's going through really tough times. She met her second half, both are seriously considering having kids..She knows she cannot on her own. Moreover, she's known this since 18 yrs old when her doc diagnosed her on MRKH..As she says erlier she didn't take the issue for serious. Or just didn't want to, but now when she's absolutely ready to create her own family this dx is a constant stab in her chest..I feel so hopeless too. I'm trying to find ways to support her. I'm looking for others' stories, blogs, and how they manage to deal with the issue. I'm looking for all the possible comforting words..But currently I fail..I'm afraid she's getting irritated with me now..Am I overthinking? All I know it's not always easier to hide behind the screen. But connect with others and ask for help. This article is definitely a good reading. Ladies with MRKH are brave worriors, no doubt. May god bless all of them. Also a special thanks to the author of the article. Much has been done for others' benefit.
4
@Anne Shollar You are a brave women and beautiful by all means! MRKH is not an easy issue to beat..My heart goes for all of you.
I'm going to start a new cycle in Ukraine soon. I failed two cycles home. I had a hard time but my friends and family encouraged me to go abroad. We heard many success stories through the website mother-surrogate.info. We've contacted the clinic and are going down the mitochondrial donation route..Hope to share some good news soon.
1
Thank you for sharing your story. I'm glad you have reached a resolution with this condition.
I knew a young woman with Turner's syndrome, a genetic anomaly which causes many symptoms. She had a uterus but no ovaries. It also caused her growth to be stunted, but fortunately human growth hormone helped her achieve a reasonable statuture, after which she had to begin hormones so she could develop as a "normal" girl. (quotes not because she's not normal but because normal is a construct)
I'm glad that people with these anomalies can now support each other.
2
@Barbara
Turner's syndrome can affect growth and the young girls who are 18 looks like they are 12. It is very hard to deal with. Many are born without ovaries but had a uterus. Very hard to deal with. I am proud of all of these women posting here today.
1
I’m happy for you persevered.
1
Our first child (a daughter) was born with an invisible birth defect that made having BMs impossible unless she was standing up or lying down. Toilet training was a dismal failure. Two intestinal blockages and years of daily mineral oil followed.
Age 2, 3, 4, 5, 6... Friends, doctors, psychiatrists, psychologists--everyone blamed US. We were too stupid to toilet train a child, and she was so "bad" that she refused to do that simple thing. One doctor sneered, "If my daughter tried that, I'd lock her in the bathroom until she went on the pot."
Finally a new acquaintance said, "Oh, my son had that. A doctor at Mass General did surgery and he's fine now."
In 1982, just before 1st grade, our child had that surgery, and recovered well... except for the emotional results of all those years of terror that she might have a BM where she shouldn't, and a persistent sense of "failing."
The words "anterior placement of anus" were such a relief when we finally heard them spoken. A name--a diagnosis--turns an amorphous, shameful mystery into something one can deal with.
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@MLChadwick Thanks so much for sharing this!!! So wonderful t hear other similar stories of other conditions!!! I hope your daughter is doing well now!!!
11
At the age of 71 reading this brought me back to my similar experience with MRKH at age 16. Through the years the gynecologists who I had to educate then asked if their associate could examine me will always make me feel like a medical oddity. The feelings still still are very real and raw. Happy that young women have more options to have children today. Just reading this I know I am not alone. Thank you.
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@Anne Thanks so much for sharing this Anne. If you are on Facebook, you can find a wonderful closed page for people like us. Just search MRKH!!!!!!
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@Anne I'm sorry to hear you've been among..This is definitely a tough and demanding condition to live with. And you're so much right, young ladies have so many options nowadays to have a baby. A friend of mine is currently looking onto ART options. Her dh almost ''insists'' on surrogacy. But it's well known dr is the one to advise the best route..I'm just praying for them and all the others sailing in the same boat. God bless you.
1
@Rebecca I'm sorry to hear your friend found herself in this tough condition.. Here's a couple of things just for your general outlook, I'm just hoping this migt help somehow..Ukraine has explicit legislation supporting surrogacy contracts for heterosexual married couples. Embryo donation is legal. Egg donation is regulated by law. In addition Europeans and Americans do not need a special visa to enter the country for the purpose of surrogacy. Under Ukrainian law the child is considered to belong IP from the moment of conception. Once the baby is born the birth certificate is issued with the names of the IP. Surrogate is not awarded any parental rights. She has no standing to keep the baby or claim any rights. This is true even if egg and sperm donors were used so there were no biological relation between the child and IP. Their names remain on the birth certificate. Under the guidelines Ukrainian surrogates must be: Between 25-35 years old. The natural mother of at least one child. Mentally and physically capable of becoming a surrogate mom. Surrogate may have no relation to commissioning parents. The marital status of the surrogate is irrelevant..
I hope things will go to their places soon.
1
Hi Susan, We knew each other in our 20's and 30's, and I remember your sharing this with me. I also remember how straight forward you were and that did not seem embarrassed or ashamed. I am glad to read your article and know that you are well. Mary Anne
20
@Mary Anne Cohen Wow! so happy to hear from you. Hope you are well.
8
Entirely different condition, but after a spinal cord injury at age 20, I was left with a drop foot and blamed myself for not having the will power to NOT walk on the outside of my foot. It was a matter of nerve connection (lack of) to the relevant muscles. After corrective surgery four years later, it helps me to stay conscious of putting my foot down flat whenever possible, but it really is not about my lack of will power!
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@Julia Thanks so much for sharing!!! NO it has nothing to do with will power!!
2
One in 4,500 does not sound THAT rare. If that figure is correct, we should all know about this.
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@Elise As I said rare but there!! Whenever I have told people, it was the first time they heard of it. And yes, we should know about it!!!!!!
thank you!!!
9
@Elise Unfortunately.. this is not rare!! I've never thought I'd investigate on this point one day..Hardly could I imagine a close friend of mine would suffer the same issue..Poor girl she is. She met her man. She feel in love. They both want kids so much!! They're looking onto med help and all the possible ways out. They are strong and don't seem to abandon hope though it's extremelly hard at times. I just want to see the joy in her eyes again like many yrs ago, when she didn't know she had MRKH....
2
God bless you, My Sister, Daughter, Child. You are fine and good. Never, ever doubt that.
17
Something similar (without a clinical name) was a subplot on Call the Midwife recently.
10
@Greater Metropolitan Area
Yes, and it was dealt with in a way that was honest and understanding. Here's an Old Male who loves that program!
7
@Greater Metropolitan Area
One of my favorite shows. I love it.
I am really sorry to hear about Ms. Rudnick experience but things have to be set in context. I guess she was correctly diagnosed with vaginal anegesis around 1980. Still the first research papers widely available about MRKH syndrome were not published until 1994. In fact, my 1997 Taber's copy does not even mention MRKH.
So you cannot really blame the first gynecologist she consulted for not having named the condition, even if he identified it. Pre Google years...
Think there is not even a correct ICD-9 code for MRKH (maybe 752.49); we have ICD-10 ones.
Wishing very sincerely the best to Ms. Rudnick and other patients.
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@--Jack Maybe the first research papers were not published. But the syndrome was named by the 4 doctors who discovered it 100 years ago!!!!! Look up when those doctors lived. And even now women have a similar experience to mine.
12
@Susan Not arguing here but it was not until 1961 that Hauser coined the MRKH syndrome term before it was commonly used in 1995.
I still maintain the term was virtually unknown from the medical community when you had your first consult around 1960...
"Hauser, a Swiss gynecologist born in 1921, presented in a paper
(Hauser and Schreiner, 1961), a personal review of 21 cases of MRKH
syndrome and gave accurate historical accounts as well as a completed
definition of the syndrome (including symptoms, psychosocial aspects,
and internal genital structure). Like Küster (1910), Hauser also advocated
the association of urogenital and skeletal defects in vagina agenesis
patients (Hauser and Schreiner, 1961). He was also supportive of the
need to classify patients with testicular feminization syndrome from
patients with uterovaginal defects. He pointed out the problem with
differential diagnosis and treatment of this condition (Ghirardini and
Popp, 1995). Hauser gave this disease its current name, i.e., ‘Mayer–
Rokitansky–Küster syndrome’. In 1970, Vecchietti wrote a book on
this syndrome and proposed the addition of “Hauser” to the description
of the syndrome (Vecchietti and Ardillo, 1970). Eventually, the
name was further extended to the current eponym — ‘Mayer–
Rokitansky–Küster–Hauser syndrome’ (Ghirardini and Popp, 1995)."
Please cite this article as: Patnaik, S.S., et al.,(MRKH) syndrome: A historical perspective, Gene (2014), http://
dx.doi.org/10.1016/j.gene.2014.09.045
7
@--Jack
wow Jack -- that's alotta mansplaining there.
22
My brother has Klinefelter syndrome. Most doctors don’t know much about it either. He was born fertile, but recently it has been discovered that sometimes their sperm could be used via IVFs. The mental weight of such rare conditions is huge and depression is an unspoken reality. I am looking forward to reading your memoir.
8
@Helene Brenkman Thanks so much!
1
@Susan
Please write your story about this. I would so buy this book. I worked in the OR for five years taking care of young women with endometriosis, (this can also form in the lungs even) and how horrible that disease can be.
Without facebook and ancestry.com, there are slews of us that would never have found each other. There are tons of FB groups for those with unusual conditions (I have one) and ancestry.com has helped some of us find family members that we would never have found any other way. Cheers to being part of the internet age!
6
My niece was diagnosed with MRKH just a few years ago at the age of 16. I remember researching online for more information & finding support groups. I also know that her Dr. was able to give her loads of information about the disorder as well as point her in the direction of resources available to her as far as the support groups and such. I know that it helps her to be able to see that she is not the first person on this path and is not alone in her journey. Fortunately today, the medical profession is more open in communications when it comes to women's issues than they have been in the past (at least from my point of view). 24 years ago I was told "dont ever get pregnant, your uterus won't be able to carry a baby full term" and that was the end of it. I assumed it had to do with complications that had been ongoing following a minor car accident 15 months earlier. I beat myself up (mentally) for so many years because I felt my inability to have children stemmed from my not seeking proper medical treatment for my problems sooner. It wasn't until 15 or so yrs later that I learned my uterus had never properly formed - arcuate septate was the term used. it didn't help take away the pain that I would never be able to have a baby - but it did free me from the guilt I had placed on myself for over a decade. knowledge is power and having a name for something enables us to gain the knowledge we need.
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@Jeanea thank you so much for this!!!!!! How often we assume things are our fault!!!!!! I'm glad your niece has support!
2
The beauty of those shows, beginning with Phil Donahue and then Oprah Winfrey, was how many people were freed from enduring private confusion and pain when a random guest would appear and describe their own private mysterious secret-- I mean a secret of their own that was mysterious to them. A friend of mine discovered from Phil Donahue that she wasn't the only person in the world who, after eating, would stand in front of the toilet and magically the meal would come back up and disappear again, relieving her of a load of guilt. And when I heard a woman describe the care she took to cheer up her suicidal son, it dawned on me that my family was unusual in treating my depression as proof that I didn't belong, and the best cure would be to add hardships anresponsibilities to my daily life. Phil Donahue, esp. kept the focus on his guests and the sheer unexpectedness of his guest's stories. That was what was such a gift to so many who suffered in just the way Susan Rudnick describes-- less from her syndrome than from her isolation, and from having no sense of her own reality.
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@ginger wentworth I love this because it helps us remember Phil Donohue’s show, such a trailblazer for exactly this kind of thing.
6
“We hug to feel our connectedness. And in earlier years we counted the blessings of our children through adoption. In my late 40s I remember crying with joy at reading how extracting eggs through laparoscopy could lead to parenthood through surrogacy. And within the last few years, our community has shared amazement at the miracle of uterine transplants resulting in successful births.”
This all-consuming desire to have children- no matter the cost and pain involved. I just don’t get it. The planet is already over-crowded.
16
@Belle
It is about wealth and ability to pay for legacy
- good or bad. Poor women and men have to move on.
4
@Judy
Oh, come on! The wish to have children when physically unable has nothing to do with money.
11
@Belle I think for some people, the desire to have children IS all consuming, while for others it is less pressing but still important. I am not one of those people, but I think the desire is very real, and to some degree, genetically and culturally programmed. It is also intimately connected to a sense of self; of sexuality, feeling whole, not being an outsider or "different," of not being "defective." It is easy to disparage when you are not one of the few for whom this seemingly natural act is impossible.
For many people bearing children is integral to what they think of as the human experience. I sometimes marvel at the painful lengths to which people will go to have their "own" biological children, but again, while I do not share that drive, I cannot discount its importance to so very many people. It is what keeps the species afloat, after all.
20
Like many rare disorders, this one is not well or widely understood, leading to all kinds of misunderstandings no doubt.
You don't mention when exactly you were given this more exact diagnosis, but I expect that it was not long after the advent of internet groups for many medical disorders. Likely you could have found it yourself online after that.
My daughter has a rare form of a rare brain malformation, and when she was born 31 years ago it was not often diagnosed right away. Now it's usually discovered in utero or shortly after birth, but we all lived with its effects for 17 years before finding out the name. And I agree it's been empowering for me, although she doesn't really care much.
Best of luck to you now that you have a name for something you have dealt with seemingly well before and since.
15
@Susan Its great to hear from someone with a similar predicament , although different syndromes. I was given the description of the diagnosis, but not the name, which would have made all the difference.
thanks so much
5
Having a correct name for symptoms or for a condition is essential to dealing with it, particularly when so much misinformation is available online.
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@S. Mitchell I totally agree!!!!!! It still boggles my mind, that the diagnosis was named 100 years ago, and the doctors failed to tell me.
12
Thank you so much. My boyfriend’s daughter was diagnosed with this about 35 years ago. I will share it with him in case she was never given the name.
I continue to be appalled at how inadequately medical professionals treat women’s health matters.
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@Quin
Yes, while I think this could happen with other rare conditions, not limited to gender, I also speculate that somehow women's health issues may be more of an issue.
Good for you to check with your boyfriend. Hope she has it!!!
thanks Susan
7
"Never having to worry about getting pregnant, I could revel in my sexuality."
This is why women continue to be objectified by men, and forced to be labelled according to men's sexual power and preference.
Women having sexual and reproductive power terrifies men for some reason, and this fear is a pall that hangs over the entire world.
11
@deb
Yes, for me being able to be sexual was something I did have, as opposed to what I didn't. But being judged for my capacity to bear or not bear children stigmatized me.
Thanks
11
I knew someone in college with what was probably this condition. I'm not sure she'd ever been given a name either. I hope she's found this community.
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@Spaypets
I hope so too. There are close groups on Facebook, should you ever have an opportunity to connect.
Thanks Susan
2
@Spaypets I hope so too. The thing she's never mentioned the name of her disease is understandable though..No one wants to be ''judged'' or ''blamed'' People might hide the truth for the own peace, so I understand this. Another thing is to look for ways out. To search for ways of feeling better and finding happiness in life. I know sb with MRKH who's undergone surrogacy and is currently nursing her little one. She seems to be the happiest in the world even though she was born without womb and this issue will remain with her always..
Thank you for your story.
24
Awesome Article. I too was in your shoes when diagnosed. Now 37, found MRKH community and helped me so much learning about it. Being in Rural Northern Canada, must doctors don't know anything about MRKH.
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@Robin
Hi Robin,
So glad you found the article. Maybe now you can share it !!!
Susan
3