Living with Müllerian agenesis
Müllerian agenesis, also referred to as müllerian aplasia, Mayer-Rokitansky-Küster-Hauser syndrome, or vaginal agenesis, has an incidence of 1 per 4,500–5,000 females. It is a rare disorder in which the vagina doesn't develop, and the womb (uterus) may only develop partially or not at all. This condition is present before birth and may also be associated with kidney or skeletal problems. It is most often identified at puberty when a female does not begin menstruating. Women with this condition have ovaries and external genitalia (vulva). Penetrative vaginal sex is complicated or impossible because the vagina is absent entirely or shorter than usual. We talked to one of our followers about what it is like living with this condition.
WHAT EXACTLY IS YOUR CONDITION? MÜLLERIAN AGENESIS COMES IN DIFFERENT FORMS, FROM COMPLETELY MISSING UTERUS AND VAGINAL CANAL TO THESE BEING ONLY PARTIALLY DEVELOPED BUT NOT MISSING COMPLETELY.
I have what I’ve been told is an extreme case considering my urinary tract and skeleton are normal. I have no reproductive organs besides one ovary. No Fallopian tubes, uterus, or vagina. Where my vaginal opening could be I have a solid, but elastic bit of flesh that has smooth edges and a spongy middle. The outside of my vulva is completely normal.
WHEN WAS THE FIRST TIME YOU FOUND OUT YOU WERE DIFFERENT?
I knew that something was different from a young age as my mother taught sexual education so I knew the anatomy and I knew that I couldn’t get inside. I thought that it was just a solid hymen. My mother took me to the doctor when I was 15 when I hadn’t started my period. That was easily one of the most traumatic days of my life. They put me in stirrups, then the very awkward nurse proceeded to try and penetrate me with her hands while making eye contact and not looking at what she was doing. The pain was extreme and I physically reached down and stopped her. Next was an ultrasound by a very confused tech who kept making me drink more and more water so she could see through my bladder to find a uterus that wasn’t there. Again, pain and a confused person who did not know how to respond to my body. Then there was an ultrasound and genetic testing. Finally, a diagnosis was made as I’m genetically female and ‘normal’. I didn’t know what the diagnosis was though, until my mother died in 2015 and I found her notes from a doctors visit.
HOW DID THIS CONDITION AFFECT YOUR RELATIONSHIP WITH YOUR OWN BODY?
Terribly. I grew up thinking that I was some deformed freak that no one could help or relate to. I didn’t even touch the bottom half of my vulva when masturbating until the last few years. I’m 36. The pain from that woman trying to penetrate me was still there. I stayed in a horrible relationship with the high school sweetheart because I knew I wanted to be with a man but I did not think a man could ever accept me and stayed with a woman that treated me poorly because I believed I was unlovable. I’m barely coming out of this now.
HOW DID IT AFFECT YOUR INTIMATE RELATIONSHIPS WHEN YOU WERE STARTING TO EXPLORE SEXUALITY?
I had a boyfriend when I was 16 whom I never even told even though he had his hands down my pants on a few occasions. My mother told me to tell no one because they would not understand so I lied to my peers and friends about it until she died. It made me not explore much at all in my teens and twenties and fell into a boring loveless marriage.
WHAT IS THE MOST CHALLENGING PART FOR YOU THESE DAYS WHEN STARTING A NEW RELATIONSHIP AND HAVING TO EXPLAIN YOUR CONDITION TO YOUR PARTNERS?
I honestly haven’t had very many partners. I’ve found a fantastic man who understands so I don’t think I’ll have to explain to very many more. Every other partner I’ve had has been a woman they usually just go huh and don’t really mind it’s just one less thing to have to work. When I told my current boyfriend, it was hilariously awkward because I started the whole thing off with “how good is your concept of female anatomy?” He gave me confused eyebrows to which I said “I promise I’m not a dude, but I don’t have all of my parts” to which he was even more confused and backed up a little (we were making out on the couch) and I laughed and said “just give me your hand I’ll show you” and I took his hand and put it down my pants and explained I didn’t have a vagina but was open to finding other things to do. He was confused but eager to see what was up. We’ve had a few issues but it’s really just about getting over the initial awkwardness.
HAS ANYONE EVER REACTED NEGATIVELY? NOT ACCEPTING?
HAVE YOU CONSIDERED VAGINOPLASTY, WHICH IS OFTEN PRESENTED AS AN OPTION FOR DEALING WITH THIS CONDITION?My parents took me to a few surgeons when we first found out. One was very creepy just kept talking about taking photos and all of the dilators I’d have to use and hadn’t even looked at the MRI that had been done. He just wanted to do exploratory surgery and made me feel like a piece of meat and is a reason I don’t trust doctors to this day. Thankfully, my parents agreed. We went to a second, female surgeon who wanted to take a piece of my large colon and move it down to be like a vagina. She said that it would have natural secretions but I’d always have to wear a pad because it wouldn’t have an off like normal vaginas. My mom asked if there would be any sensation on my part and the lady explained that no, there would be no sensation and it could even damage what nerves I do have. My mother responded “I don’t think my daughter needs a penis parking spot” and we left. It just isn’t a viable option. I’m very thankful I was not cut open I can’t even imagine what horror I would have ended up with.
ARE THERE ANY SUPPORT GROUPS WHERE PEOPLE CAN DISCUSS AND SHARE THEIR EXPERIENCE WITH THIS CONDITION?
I’m not a part of any groups. They do exist but I’ve only been able to find ones that are all focused on grieving not being able to have children and surrogacy and all about reproduction which is not what I would want support with. I would love to connect to other women talking about how their specific anatomy works for pleasure in different ways than typical females. Living with the reality of only anal.
WHAT WOULD YOU TELL A YOUNG GIRL WHO JUST FOUND OUT SHE HAS MÜLLERIAN AGENESIS? THINGS YOU WISH YOU KNEW WHEN YOU WERE YOUNGER AND DEALING WITH THIS.
Anal! Not even my sex ed teacher mother thought to mention that I have a very pleasurable available option. Sure, there is prep, but there’s so much joy inside. That you are not a freak and just as much a woman as any woman that has a vagina.
DO YOU ORGASM EASILY?Didn’t think I did until I stopped using my vibrator and learned to relax. And now I’m very easily orgasmic. I mostly experience clitoral and anal orgasms as I don’t have a vagina or cervix. I get a few different kinds of clitoral ones, my favorites are when my stomach feels like it drops out and I know I’m going to cum and there’s no stopping it. There’s an intense almost I’m about to sneeze sensation in my clit (mostly down the sides) that I love more than orgasm, honestly. I stay here as long as I can and then my body will explode with convulsions. I need a break after these. I also orgasm clitorally where it’s waves of intense pleasure where I squirt at the peak and then instantly go back to almost orgasm and orgasm and squirt again. This is usually when I’m getting eaten. Anal ones are not as intense and I can take back to back to back. They feel deep and ripple through my legs differently than a clitoral. Nipples won’t make me cum but they make me squirt and are essential to my arousal. When I’m with a man, anal is my only option. That being said, I absolutely love it. I wouldn’t fuck men for years thinking I would not enjoy it (I’d experimented with toys and fingers and did not enjoy), but now I feel like I have an advantage in that it’s very very easy to stimulate my prostate through anal because of my lack of organs. I love getting my ass grabbed, bit, and played with.
WHAT WOULD YOU LIKE PEOPLE TO KNOW ABOUT THIS CONDITION?
It’s fairly common! Just re checked and it’s 1 in 4500 now. I find it appalling that only one out of all of the medical professionals I’ve seen my entire life knows what I’m talking about. If anyone comes forward and wants to talk to me I’m ok with that (you can contact us to give you Z's contact details).
I really really appreciate you taking the time to think up some questions. I’m reading the Erotic Mind right now, on your recommendation, and it is helping me immensely. I’m able to relax with my partner now and actually receive. This is a first for me. And all thanks to you!!