….Was named in 1838 (and again in 1910) for the men who discovered physical commonalties in an unusual situation.  This is a condition that involves congenital absence of the vagina, fallopian tubes, cervix and uterus.  Some women have uterine remnants, or horns.  External genitalia are normal.   Chromosome karyotype is 46XX (normal female). The incidence rate is approximately one in 5000. Other symptoms involved can include kidney abnormalities, skeletal problems and hearing loss.   The cause is somewhat unclear, but the Syndrome occurs sometime during the 4th-6th week of fetal development….





A questionnaire was offered to an MRKH support group of 250-300 women.  Twenty-one women replied.  I found it nearly impossible to summarize the data collected.  It became even clearer to me that this is such an individual experience for the women involved.  I was hoping for similarities.  Common answers to questions in my life that this experience has raised for me.  I did find similarities, but this report will differ greatly to the reports I have read by 'medical professionals'.  MRKH is more than a medical condition. Society and culture play a major role in how MRKH affects us.  Even though there are variations in the answers I received, there is the common loneliness, pride and strength voiced by the women. Some answers are listed below the questions.


This report will not be your typical survey report that wraps it all up.  This is not a typical situation to report on.   I felt the most honest way to express the replies was to share the direct answers.   This is purely a collection of thoughts and experiences. This report should not be used for diagnostic information or medical advice.  I didn't bother with a 'control group' comparing our needs, reactions and situations to women who were born with vaginas.  It has bothered me to read about my body and my life "as compared to normal women".


The only generalization I can make from the women who replied is that they represent a more positive, proactive group of women. First of all they know they have MRKH.  They have the support of each other. These women also have access to information through the Internet. For many women; worldwide and class-wise, information is not available.




How women get diagnosed with MRKH:

There is a difference between discovering the symptoms of MRKH and actually being diagnosed with MRKH.   The replies differ upon interpretation.


13 Women discovered they didn't have a vagina or uterus when they didn't start their periods.

1 woman learned from an infant hernia operation.

1 woman had stomach pains that led to hymenectomy.   The hymenectomy led to the discovery.

The remaining women listed ultra sound, laparoscopy, and pelvic exams for how they were     



Only 4 of the 21 women had Doctors who knew about MRKH from the start.    Two of those 4 had only heard about MRKH and not treated other women. Other women learned about it on their own many years later.   A 28 year old woman was diagnosed by an ultra sound technician who also has MRKH.


Age of Discovery :

Average age of discovery is 17 years old.

        15 Women found out at the age of 17 or

younger .

        3 Women found out between 18-25

        3 Women found out between 26-35


Current Age:

        The average age of women completing the survey is 29

        7 women who replied are 20 or younger.

        5 women are between 21-30

        5 women are between 31-40

        4 woman were older than 45

Did our doctors know anything about MRKH at the time of discovery

        Don't know.  I found out 20 years after surgery.

        Dr was shocked during pelvic exam and brought in another doc to see "what was up".  Other doc ran to his office to look it up.  Found a paper with RKH scrawled on it.

        Not the 1st one-referred for 2nd opinion.

        No name for it-but another patient has it.

        Maybe-not told until 2nd visit.

        No-called in several Drs to discuss my case.

        Yes-but only 1 page study in medical school.

        Yes-very knowledgeable.

        Treated 1 other patient but definitely wasn't well read on subject.

        All they told me was "It" had to be "corrected’’.


The countries represented by the participants…

1 woman lives in Canada ; 16 women live in USA ; 1 woman lives in Israel ;

2 woman live in Australia; 1 woman didn’t answer



Types of vaginal surgery/treatment

14 women have had treatment or surgery including…

        McIndoe Surgery Procedure (6 women)

        Dilation.  (2 women)

        Boyfriend who was patient/kind created vaginal canal.

        Chose my own method of selecting gentle patient lovers who enjoy oral sex when vaginal sex is painful.

        Laparoscopy to determine lack of uterus and kidney. Didn't know about the slit for self dilation

        4 surgeries.

        Many different surgeries.

        Just the laparoscopy.

        No treatment / has vagina but no uterus.

        Tried intercourse method-now dilating.

        2 women are currently dilating.

        Labia flap vaginoplasty


Ages that women had surgery/treatment

9 women had treatment at 20 years old or younger.

2 women had treatment/surgery between 21-30.

2 women had treatment/surgery between 31-40

1 woman had treatment/surgery at 40+

        My 1st surgery at 22 years old.    The 2nd surgery

        at  36 .

        Imperforate anus at 1yo-   partial hysterectomy at 14yo – vaginoplasty at 22 -  colostomy at 25.   All mrkh related.

        Age 18-exploratory laparotomy to "take inventory".   Vaginoplasty was 'threatened'.

        1 woman will start dilation soon.

        1 woman didn't answer.


Do we want vaginal surgery/treatment or do we feel it is required…

        Required for me to be sexually active- didn't like dilators.

        Wants to share a sexual relationship with the man I love.

        Knew it was the only way to ever be sexually active.

        Sexuality was never discussed.

        Need surgery to have heterosexual intercourse.

        Not sure if I was given a choice on the slit-before self dilation.

        Husband gave me a choice.  I wanted it for us.

        I wanted to be as normal as possible.

        I wanted it to feel normal, not just for sex.

        Required for me to be sexually active.

        Correction was a given.  Nobody asked me what I wanted.

        Told to arrange for surgery when I plan to get married.


Are there regrets about having vaginal surgery/treatment

6 women answered simply no.   Other comments include…

        Not so far except for the pain.

        NO WAY !

        No regrets, but wish I didn't have to go through this experience.

        Glad not to have surgery, no regrets w/ boyfriend treatment.

        Just the 1st one.

        Glad I didn't have Williams procedure.

        Regret that it was expected.


Do doctors tell us what to expect after surgery/treatment and are they accurate?

2 women answered no.

        Yes but not accurately.

        Yes, accurately.

        He did-hope he was accurate.  He gave me other patient’s phone numbers.

        Not the 1st one-that’s why it failed.

        NO!  Didn't tell me how much pain I would be in after surgery.  Or that I would have pain during

Intercourse for the rest of my life.   Told me I would be 'normal' after surgery.

        Fairly accurate in physical information.  No one could prepare me for the emotional aspects.

        Yes, accurately.

        Yes, and yes.

        Yes. But didn't prepare me for inserting dilator.   Caused setback / shrinkage.



Do doctors explain the various methods of vaginal surgery/treatment?

3 women answered no

4 women answered yes

        Dr referred to metal dilators as "like shoe stretches". Then suggested I become a nun. He told

me "If someone marries you - you will need these dilators".

        Don't know much but they're trying.

        Thought McIndoe and bike seat were the only options.

        Encouraged to come back to discuss it.

        Neither of them did.

        Not completely.

        Absolutely not-his focus was on creating vagina to have sex w/men. And finding Y chrom.

        Not the 1st time.

        Not discussed.

        Yes, but he felt non-surgical treatment was best.

        Explained Williams and McIndoe.   Joked about bicycle seat dilation.

        McIndoe and dilation.



Who decides what to do for surgery/treatment….

4 women had a prescribed treatment.

3 women chose on their own-1 with help of counseling.

2 women followed their doctor’s recommendation.

        Told the DR to take a hike. Chose my own method of selecting gentle patient lovers who enjoy oral sex when vaginal sex is painful.

        He let me decide with limited information.

        Will insist on dilation, if possible.

        He advised-I agreed

        Not given the option of surgery- I was given dilators but never use them.   I chose my boyfriend.

        He did what he usually did.

        He decided the 1st time. The2nd time I took control.


Doctors opinions about whether surgery/treatment is successful…

8 women were told there surgeries were successful by their doctors.

        Yes.  I was unwilling at 1st.  Dr supported me.  Later he thanked me for being his greatest victory.   I was his 1st successful dilation.

        He never followed up.

        He said, "That should be sufficient"

        He thinks so.

        Progress was "satisfactory".

        Never went back.  Internist told me I was a little small-but not noticeably.


Our opinions about whether surgery/treatment is successful…

9 women answer yes

        My own method of selecting gentle patient lovers is successful.

        Yes. I recommend McIndoe.  The Drs were amazing.

        When I was dilating regularly. I took a break and have shrinkage.

        The 2nd one.

        Dilation is certainly helping.


Did surgery/treatment leave women with other physical problems that they didn't have before?

9 women answered no.

        Gyn said labia were normal size-but I had plastic surgery to make them the size I wanted.

        High dose of estrogen before and after surgery caused a reaction to an undiagnosed   syndrome that caused

tumor development.

        Just those darn scars.   3 other women mentioned the scars from skin graft donor sites.


Complications involved with surgery….

5 women of the nine women who had surgery reported no complications with their surgery.   The question didn’t get answers from women who had dilation treatments.

        I was constipated in the hospital-when I finally did go I pushed the mold out 2-3 inches which was horrifyingly painful.   Not sure if that was a complication or just what went w/surgery.

        Closed up completely and bled for months.

        Addicted to morphine in hospital.

        No.  But they didn't prepare me for inserting dilator. 


Do we ever consider not having vaginal reconstruction

Five women simply answered no

        Sure of wanting it since I found out.

        I definitely want a vagina.

        No.  Wanted to correct it ASAP.

        Still considering not having reconstruction.   Depends on whether future partner(s)want me to.

        Yes.  Husband gave me a choice. I chose it for us.

        Not really-just which one.

        Seemed a given.



Are other symptoms of MRKH adequately cared for

        No other symptoms (4 women).

        Yes.  I have a single pelvic kidney.

        Yes-painful infantile uterus removed-facial surgeries, hearing loss.

        Yes (5 women).

        Only since changing Drs.

        After 14 years of hiding in the dark.

        Not really.

        No answer (3 women).

        No attention needed for missing kidney.

        Never knew about symptoms until now.  Knowledge of MRKH could have prevented other problems.

        Single kidney gives me no problem.  Very healthy.





13 women are sexually active.

7 women are not sexually active.

        Not w/other person     




Sexual preference/orientation…

14 women are heterosexual

4 women are bisexual

1 lesbian

1 no answer

        heterosexual –asexual (I had no sexual identity once treatment was over.)


Do doctors talk about alternative sexual activities other than vaginal penetration

7 women answered no;  

3 women answered yes.

        No-they don't talk to me about sex.

        No.  Doc did mention that w/a clitoris I could be sexually aroused.

        Glad they didn't.  Still would have wanted to have a 'normal' sex life like any other woman.

        Absolutely not-my pleasure was not an issue.

        No-but would dilate anyway.

        The 2nd one did.

        He cornered me and told me how men like oral sex. He told me about different positions.  He

humiliated me.  I didn't trust him so I didn't ask him.  Would rather talk to a woman anyway.

        Yes.   The whole conversation embarrassed me.

        No. But I knew.


The hardest sexual issues we deal with because of MRKH…

        Acceptance.  Not so much now, but I wonder if I feel different by comparison.

        I used to wonder if I felt normal to my partner.

        Wondering if I'm worse than a normal woman.

        No matter how much sperm and semen get in me I will never be pregnant.

        Knowing I can never bear children.  Wondering if any man would love me if I couldn't give him a son.

        Felt almost like what's the point-I can't have children-didn't feel very feminine for that.

        Explaining shorter vagina and scars on butt.

        Being asked flat out why I was "so shallow".

        Rejection raises all my insecurities about being good enough sexually.

        The 1st time with a new partner.

        Haven't gotten to be able to tell men about it yet.

        Having to push guys away w/o telling them I didn't have a vagina.

        Being truthful with my boyfriend.

        Telling partners.


Treatment or surgery

Sexual Frequency

Frequency of vaginal penetration

Other sexual activities

The most pleasure…

Gentle, patient lovers

Several times a month


1 or 2x a month

oral sex, masturbation

hand clitoral stimulation from partner


At least 2x a week


at least 2x a week

anything but anal



3x  a week or not for 2 months.


3x a week or months


oral and penetration

Slit w/dilation

2 or 3 times a month

2 or 3 times a month

No answer

No answer




Several times a week-sometimes more

Manual and oral stimulation

ORAL!  Intercourse is more mentally stimulating than physical but enjoy it.   Still feel like I'm missing something


No answer

1x every few weeks

oral, dildo, vibrator, manual

Intercourse.  The emotions more than the act

Hymenectomy , followed by dilation

<1x a month


<1x a month

oral and masturbation



2-3x a week


most times

No answer

No answer

labia flap vaginoplasty

2-4x a  week



oral, masturbation, anal

oral and intercourse

Born with vagina

5-6x a week


5-6x a  week

oral, anal

Intercourse. Oral and clitoral stimulation


1-2x a week


1-2x a week


oral / manual



4 or 5x a month


fingers and tongues FOREPLAY!

fingers and tongues

Cancelled Williams surgery. Now dilating

Not often enough.

Approx. 30% of sexual activity

Mutual masturbation, oral sex

Oral sex


Is sexual intercourse/vaginal penetration painful?   (Thirteen women are sexually active.)

6 women answered no

1 woman answered yes

        No.  Full penetration is not possible.

        Not usually.  Problems with lubricating.   Easier for me to be on top.

        Extremely painful after 1st surgery.

        It was before I knew I only had a 'dimple'.  

        Generally no.  But only in the beginning if we haven't been active for more than a few weeks.

        Sometimes-when I go for couple of weeks without penetration.


Using dilators…

        PROPOSED-all the time for the first 3-4 months.( except when showering or bathroom).  Then only at night..

        Not had to since the original course of treatment, even after not being sexually active 1 1/2 years.

        Vibrator is more pleasurable.

        Not needed.

        Supposed to use it 1x day

        Try to 2 / 3x a week.

        1-2x a week.

        Use my husband.  Used glass stent until marriage.

        Not enough- approximately 1x week.

        Use sex.  Off and on when not having sex.

        I couldn't use the last one because it hurt too much.   I hid them in the attic.  My mom found them 20 years later.


How long it takes to create "acceptable depth" with dilation treatment…

        Less than a year.

        6 months

        2 months.

        No answer.

        Approximately 18 months on and off.

        Approximately 6 months

        Reached what is considered acceptable length but not had sex since then.


     The "Big O" …..





Selecting gentle patient lovers






Foreplay before intercourse. Being open/honest with partner helps




Concentration.  Orally-mostly rubbing during intercourse




Oral or manual stimulation



Yes.  Vibrator helps with pain.

Penis, dildo, masturbation, vibrator


Hymenectomy , followed by dilation


masturbation or oral






Labia flap vaginoplasty


Receiving. Being in the mood


No treatment / has vagina


Vaginal penetration. Clitoral stimulation





Not to my knowledge



Fingers and tongues



Cancelled  Williams surgery. Now dilating





Sex Partners…..




None have reacted negatively

no answer

Tab A went into slot B and they were none the wiser.

Slit w/dilation

Surgery was minimal-no problems


Somewhat surprised.  Most couldn't tell.


Husband loves that his wife has a "made to order" vagina

Hymenectomy , followed by dilation

Once asked why I was   "so shallow" , but very few knew.


1 partner called me a "freak" and walked out.   Next one was loving and supportive-still together.

labia flap vaginoplasty

Ok.  Still scared about telling


Men weren't bothered by it


Mostly ok- one guy asked "Can't you fix that thing?"



How we took the news, and our parents reactions…

        I was in shock.  Parents devastated.

        I knew all my life-but it was hard.   I blamed my mom.

        Mom feels responsible.

        I suddenly felt abnormal, inadequate and angry.

        I felt robbed. Parents felt guilty.

        We were all happy to have the puzzle solved.

        Don't think it affected my parents much.  Now hitting me now @ 34 years old.

        Father made me feel I caused it myself.

        Wanted direction and support from parents-mother insisted I "behave because the Dr was saving my life".  Dr was clinically abusing me.

        Sure family had a hard time coping but I thought I would never stop crying.

        I was in denial at 1st.  Family felt for me but didn't ask.

        At first it was harder on my mom, but now it's harder on me.

        Never discussed it with my parents.  Think we all tried to pretend it wasn't happening.   It has taken me 20yrs to begin to accept it.


Is self-esteem threatened without a vagina?

        Not really-I look like a woman.  Am just as much a woman as anyone else.

        At first, not now.

        Yes-in the beginning.

        YES.  It's just not fair that some people have to suffer like this.  I'm lucky to have a short vagina and a huge ego with a few well hidden scars.

        YES.  Feel like everyone who knows thinks "Yikes-she has no vagina." Feel 'normal' women would view me as less than a woman.  A gender caught between womanhood and nothingness.

        Not because of vagina-because of no uterus and only because I can't carry a child.

        Yes-to some degree.


        Absolutely not. Being presented as an anomaly and having a Dr who was adamant about finding a  Y(male) chromosome killed any sense of self or sexual identity. I don't think that the 1st person to tell you that you may not be female should be a strange man with a release form in his hand. I had no sexual identity once treatment was over.

        Because I can't have children.

        Because of the missing uterus.

        Very much so.

        I didn't think any man would love me-but I never doubted that I was a real woman.

        Don't feel attractive because I don't have a vagina.   Missing part of my femininity.

        Sometimes I still feel abnormal.

        Have a vagina.  No uterus threatens identity. Lost love for myself. Depressed for years.

        Society places so much emphasis on child-bearing and being "normal".


        Very much so.  Began to feel OK when I got involved with spiritual movement.

        Dr. told me, "Some species respond to overpopulation by producing sterile females."


The hardest emotional things about MRKH…

        Feeling like less of a woman.

        Not being able to have children and that sex life will prob'ly be painful.   Having to tell the man I love about it.

        Sometimes I still feel inadequate.

        Knowing I will never be able to carry a child.

        Not feeling like a complete woman.

        Never be able to carry my own biological child.   Never felt really 'normal'.  Felt left out as a teenager when friends started having periods.

        Feeling left out - something very valuable has been taken away.

        Not being able to have children. (4 women)

        Not being able to feel a being live inside me.

        Not having kids.  Not feeling real or complete.

        Seems like an extreme way to fit in.

        Not feeling like a proper woman.

        Feeling like an anomaly.

        Infertility-even tho I don't want children.   Feeling less of a woman, lack of self confidence.

        Not having a vagina is harder than not having a uterus. It could have a daily effect on any serious relationship.

        1st it was sexual -now it's children.

        Old boy's network can get away with anything.

        Feeling imperfect and worthless as a woman.








wasn't suggested

no surgery yet

Yes. Ask people online, and articles

just a really great friend.



Have a tough time finding anything

just the support group

no counseling suggested

no surgery/ treatment


No.  I need to deal w/myself before getting professional help

doctor suggested it as an aid for coping



no .  Drs made me feel normal. Bothers me now because I can't have children

Gyn suggested it along with family

better because I would have a normal sex life


no answer

refused it @16.  Don't need it now

no surgery / treatment yet

Every article I could find

4 yrs of therapy-antidepressants

Found therapy on my own

no surgery / treatment yet



didn't trust 1st Drs recommendation-I later found therapist



heart to heart talks w/mom

No answer

No answer

Yes-before seeing a doctor

Issues that come up in marital counseling. great friends


no surgery


very little

sought on own



wish I had. 

not about mrkh



from the GROUP

found on my own

At the time dilation made me feel worse

yes !

family and friends

Dr suggested it but I wanted to see if I could get thru it on my own




not until I found the MRKH website.  Learned more in 2 months than in the last 15 years

no answer

no answer

no answer

not much.

yes . Very helpful

Dr. recommended.  I initially opposed


the group

last 6 months

my own

no treatment / has vagina

read many articles

No. but I wish Dr recommended it

no counseling

better .  Felt like a freak when sex was impossible

just recently

just recently

slightly suggested when 16.  Wish mental health was as important as surgery


Yes.  Most of my information I found myself.

What else we have to say…

         Dr. told my mom not to tell me.

        Learned to respect myself.  God gave me a small defect to be a big part of my life because he knew it would help me.  Not a burden but a blessing in a weird twisted way.

        Peeved that Drs ask if husband has pleasurable sex because of my small vagina and never asked me if my clitoris works for me. Pisses me off that Drs just want to know if my "receptive hole" provided enough for a penis to fit in.

        This condition does not allow you to live 24 hours without tapping you on the shoulder as if to say remember me?   I'm here and you are different-you're odd.    Tampon commercials that tell me how to enjoy being a woman give me a queasy feeling.  I have learned to be positive about what I have been born with.   MRKH women are just that -women-We're not mistakes.   We're not worthless.  We're not typical...and that's what makes us strong.

        Completely positive about surgery.  Owe it to Drs knowledge and acceptance.

        Statistics would be nice.

        We need more research and publicity so we can find out the about other symptoms and reactions.

        Appalled that Amer. Dr use invasive surgery before dilation. It disgusts me that mostly male Drs decide how women's vaginas must look, feel and be formed. 

        no answer  (2 women)

        Get the word out there.  Went thru very important years feeling all alone while all along there were others like me.  Cannot explain the feeling of understanding and belonging when I found the ultrasound tech .(@28)-now my friend.

        Never give up.  I found an inner strength I thought I never had.

        Thank you for doing this. MRKH defines a large part of who I am for better or worse.  It has taught more compassion and respect for others that don't fit the 'norm’.   I struggle with not fitting in because I can't have kids.   I do wish Dr's would learn more.  I had a horrible experience. If this article helps 1 woman or teaches 1 Dr then it's worth it.

        This has given me the most direction and taught me the most about myself

        Wish Dr's were more informed.  Will never forget when I had genetic testing when a nurse told me 'In case your doctor didn't tell you, this test is to see if you should have been a little boy."   Hopefully distant insensitivity of ignorant professionals will be a thing of the past.

        I want personal information, not abstracts.

        MRKH is a difficult condition and memories and reminders infiltrate everyday life.  Difficulties discussing it with sex partners.  Feeling it's negative impact on my sense of womanhood at times.   I almost died in a car accident and I realize that things could be worse.  I am now disabled.

        It would be good to meet a doctor who knew something about it!


   Statistics we've heard regarding how many women have MRKH…

        1/2500 to  1/25000

        1/1000 women can't have children.  1/5000 have MRKH

        Numbers hold no value to me

        20% of women w/o uterus also have no vaginal canal, F.Tube.

        1/10000 to 1/million

        1/5000  (5 women)

        1:4000 or 1:10000-depending on the country

        Many different stats


        Anything from 'rare' to 'more than I think'

        Rare but not as rare as I thought when DX.   I think the problem is that Dr's don't know

        More than I ever thought (2 women)

        1:4000 and 1:10000

        No idea but at least now I know I'm not the only one.


Other physical symptoms, whether MRKH related or not.....

        No other problems (2women)

        Bladder infections. Born premature with underdeveloped lungs.   Blind until 4mos old.  Back Problems

        Single pelvic kidney.  Suspect 2 cervical vertebras are fused.  Pinkies are very crooked.

        Legally Blind w/o glasses

        Glasses.  Right hearing aid.   Webbed pinkies.  Deviated septum.  Born 1 mo late.   Prozac and Buspar.  

        Basal cell nevus Syndrome.  Medullary sponge kidneys. Amblyopia


        Discovered one Kidney@28,   Kink in renal artery. Bad heart valve due to unfound kidney problem.  Childhood hearing loss-ok now.

        Early menopause.  Nearsighted.   Rosacea (skin disorder) ulcerative colitis. 1 kidney

        Borderline High blood pressure. Severe allergies.   No Anal opening.  Colostomy- AutoImmune system kicks in with full body reaction to bowel movements.   Fused lower back.

        Single pelvic kidney. Glasses and dentures.   Thyroid destroyed from iodine.  Scoliosis and spinal arthritis.

        Scoliosis-back disability-wear two hearing aids. Circulation condition with pigment discoloration called Morphia.   Enlarged thyroid.


Esther  Morris

Copyright  October , 2000