M AYER- R OKITANSKY- K USTER- H AUSER SYNDROME

….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….

INTRODUCTION:

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.

THE BASIC STUFF:

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

diagnosed.

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.

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'.

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.

♀ Yes.

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.

SEX, SEX AND SEX

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
McIndoe	At least 2x a week	at least 2x a week	anything but anal	oral
boyfriend	3x a week or not for 2 months.	3x a week or months	oral	oral and penetration
Slit w/dilation	2 or 3 times a month	2 or 3 times a month	No answer	No answer
McIndoe	Frequently	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
McIndoe	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	masturbation
dilator	2-3x a week	most times	No answer	No answer
labia flap vaginoplasty	2-4x a week	usually	oral, masturbation, anal	oral and intercourse
Born with vagina	5-6x a week	5-6x a week	oral, anal	Intercourse. Oral and clitoral stimulation
McIndoe	1-2x a week	1-2x a week	oral / manual	oral
McIndoe	4 or 5x a month	Sometimes	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…

The "Big O" …..

*METHOD OF TREATMENT*	*HAVE ORGASMS WHEN HAVING SEX?*	*HOW WOMEN HAVE ORGASMS*	*VAGINAL ORGASMS?*
Selecting gentle patient lovers	Yes	Clitoral	Never
McIndoe	Yes	Foreplay before intercourse. Being open/honest with partner helps	Yes
Boyfriend	Sometimes	Concentration. Orally-mostly rubbing during intercourse	Yes-rarely
McIndoe	Yes	Oral or manual stimulation	Never
McIndoe	Yes. Vibrator helps with pain.	Penis, dildo, masturbation, vibrator	Yes
Hymenectomy , followed by dilation	rarely	masturbation or oral	No
Dilator	Yes	Yes	Yes
Labia flap vaginoplasty	Yes	Receiving. Being in the mood	occasionally
No treatment / has vagina	many	Vaginal penetration. Clitoral stimulation	Rarely
McIndoe	usually	Clitoral	Not to my knowledge
McIndoe	Yes	Fingers and tongues	Contractions-yes Orgasms-no
Cancelled Williams surgery. Now dilating	Yes	Clitoral	Rarely

Sex Partners…..

*WHICH METHOD*	*SEX PARTNERS REACTIONS*
McIndoe	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
McIndoe	Somewhat surprised. Most couldn't tell.
McIndoe	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.
dilator	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
McIndoe	Men weren't bothered by it
McIndoe	Mostly ok- one guy asked "Can't you fix that thing?"

THE EMOTIONAL STUFF:

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.

♀ Yes

♀ 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".

♀ Yes.

♀ 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.

Counseling:

EMOTIONAL COUNSELING	EMOTIONAL COUNSELING RECOMMENDED?	DID SURGERY / TREATMENT MAKE YOU FEEL BETTER OR WORSE?	HAVE YOU DONE ANY RESEARCH ON YOUR OWN?
no	wasn't suggested	no surgery yet	Yes. Ask people online, and articles
just a really great friend.	none	better	Have a tough time finding anything
just the support group	no counseling suggested	no surgery/ treatment	No
No. I need to deal w/myself before getting professional help	doctor suggested it as an aid for coping	N/A	Yes.
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	Yes.
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	Yes
yes	didn't trust 1st Drs recommendation-I later found therapist	N/A	Extensively
heart to heart talks w/mom	No answer	No answer	Yes-before seeing a doctor
Issues that come up in marital counseling. great friends	yes	no surgery	no
very little	sought on own	better	much
wish I had.	not about mrkh	better	little
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	Better	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	Better	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	Both	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…

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

♀ Glasses.

♀ 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

www.MRKH.org

info@MRKH.org

6 women answered simply no. Other comments include…

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

9 women answer yes

Five women simply answered no

No answer

No answer

McIndoe

Frequently

Several times a week-sometimes more

No answer

No answer