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BBC interviews woman "born without a womb, cervix and vagina'

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Dalek

Member
'I was born without a womb, cervix and vagina'

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When we first saw the doctor, my father put on a brave face. My mother, on the other hand, didn't take it so well. She blamed herself for the past 10 years. It was really heartbreaking to see her like that.

We didn't talk about it much for the first five years. I wasn't able to talk about it. I felt destroyed and incredibly weak. My mother believes she may have done something wrong in her pregnancy. I've explained to her that she didn't do anything wrong, it was just genes.

It's a condition that is stigmatised. The most hurtful thing was when I was abandoned after my former partner found out.

I was engaged when I was 21, living in Athens. When I told my fiance about the condition, he broke off the engagement. That all belongs in the past and I am OK now. For the past five years, fortunately, I have had a stable and loving relationship. He knew from the beginning that I have this condition and he chose to stay with me. He knows that maybe the future will be without children. He's OK with it. I'm also OK with that. I am one of the luckiest.

My mother took me to our family doctor when I was 14 because I still wasn't menstruating. He didn't examine me because he wouldn't touch my private parts and when I became 16 he sent me to a hospital to be checked out. They realised that I didn't have a vaginal tunnel and I had Rokitansky syndrome. Because I was born without a functional vagina, the doctors had to make one in order for me to have sex.

It went well, really well. I stayed in a hospital for about two weeks, in order to recover. Then I had to be about three months laying on a bed - I couldn't get up. I did vaginal exercises in order to expand my new vaginal tunnel. The first sign of it is you have primal amenorrhea - you don't have any menstruation at all. Apart from that, you cannot have sexual intercourse. That's why I had major surgery aged 17. The doctors made me a new one. It was a revolutionary procedure in Athens.

The new vagina the doctors made was narrow and small, and it caused me a lot of pain while having sex, and I had to expand the perineum by doing vaginal exercises. It's a small area underneath the vagina. It's skin, it's tissue, and they had to cut it more in order to expand the entrance, as I call it.

After that I was OK physically, but I was not OK emotionally. It's a burden, like something that you cannot get rid of it. I had partners who emotionally abused me about this condition. I couldn't have a stable relationship for many years because of that. It is a haunting and unbearable situation. It steals your happiness, your mentality, your chances of having a good and stable relationship. It leaves you with a huge void that cannot be filled, it fills you with anger, guilt, and shame.

What is Rokitansky syndrome?

A condition referring to women who are born with an underdeveloped or absent womb, cervix and upper vagina

Women with Rokitansky syndrome have ovaries and external genitalia (vulva) and they still develop breasts and pubic hair as they get older

Often the first sign of Rokitansky syndrome is that a girl does not start having periods. Sex may also be difficult because the vagina is shorter than normal
 

ApharmdX

Banned
Wow, that's a pretty terrible disorder to be born with. I feel sorry for her. Glad she's found someone who's happy with her no matter what.
 

Platy

Member
"Funny" how this story has lots of parts that feel almost the same to the history of trans women ... except for the part that nobody ever denied her gender, of course
 

SummitAve

Banned
She didn't tell her ex until after they were engaged? .....

I don't think it would be a deal breaker for me. Doesn't seem like it would change a whole lot tbh the heavy stigma has to be religious.
 

studyguy

Member
The new vagina the doctors made was narrow and small, and it caused me a lot of pain while having sex, and I had to expand the perineum by doing vaginal exercises. It's a small area underneath the vagina. It's skin, it's tissue, and they had to cut it more in order to expand the entrance, as I call it.

Ah fuck dude, I'd feel guilty as shit if my girl was getting nothing but pain from just routine sex. That sounds like a bummer all over. I wonder how the tissue they cut into reacts to having to expand and contract vs regular vaginal walls. Would it be similar to a post-op trans person's experience I wonder?
 

old

Member
A little off topic, but when I saw it was called "Rokitansky" syndrome I had to look up Mad Max's last name because I remember his last name being similar.

Rokitansky vs Rockatansky...so close. Will make this easier to remember in conversation though.
 

HStallion

Now what's the next step in your master plan?
A little off topic, but when I saw it was called "Rokitansky" syndrome I had to look up Mad Max's last name because I remember his last name being similar.

Rokitansky vs Rockatansky...so close. Will make these easier to remember in conversation though.

Before he was the Road Warrior...
 
These conditions that strike at many levels of identity are really interesting, the idea that they don't just challenge what healthy is but also many other aspects of being an individual in its context of gender, intimacy, and other big aspects of the human experience. Glad to hear that she's on the good road of self acceptance.
 

Nivash

Member
Her doctor examined hear for not menstruating at age 14 but... didn't actually examine her? I'm not sure if he's an idiot or just too awkward to be a doctor but that's pretty damn bad, close to malpractice territory. At the very least refer her immediately if you can't cut it, don't wait another 2 years.

Also, fun fact: the full name of the condition is Mayer-Rokitansky-Küster-Hauser Syndrome. Usually shortened to MRKH syndrome, for obvious reasons.

EDIT: I guess he might have decided to wait (the usual cut-off for investigating a lack of menstraution is 16 years) but the article made it sound like he did everything except a pelvic exam. Maybe it wasn't that weird after all. Still odd that it went undetected for so long but I guess it's possible.
 

m0dus

Banned
I read stories like this and I wonder that, (on a slight tangent), if the mountain of poorly drafted and hastily ruled anti-transgender legislation, which seeks to define gender based on 'what your are born with' could legally be used to discriminate against people with this condition, regardless of whether or not they have had reconstructive surgery.
 

jwk94

Member
She didn't tell her ex until after they were engaged? .....

I don't think it would be a deal breaker for me. Doesn't seem like it would change a whole lot tbh the heavy stigma has to be religious.

Yeah, can't really blame him for breaking off the engagement. That's not something you keep from your SO until you're engaged.
 

border

Member
So......is it possible for her to actually enjoy sex? Are all the nerve endings and such in the right place? I get a bad idea that since they kinda just tunneled out a cavity for her that it'd be mostly perfunctory rather than pleasurable.
 

kadotsu

Banned
I read stories like this and I wonder that, (on a slight tangent), if the mountain of poorly drafted and hastily ruled anti-transgender legislation, which seeks to define gender based on 'what your are born with' could legally be used to discriminate against people with this condition, regardless of whether or not they have had reconstructive surgery.

In this case the legislator would just require her to have a notarized DNA test result with her at all times. It's really the most dignified approach. /s
 
I guess her first fiance did not want to consider adoption? On her end, if she was getting somewhat comfortable with her body, that was a huge blow. Awful guy. As a gay guy, adoption is the only option I consider. I know for some that's a big deal. I'm glad she is with someone who finally appreciates her.
 

Wellscha

Member
fortunately, I have had a stable and loving relationship. He knew from the beginning that I have this condition and he chose to stay with me. He knows that maybe the future will be without children. He's OK with it. I'm also OK with that. I am one of the luckiest.

Man what a fucked up disease.
 

Ferrio

Banned
I guess her first fiance did not want to consider adoption? On her end, if she was getting somewhat comfortable with her body, that was a huge blow. Awful guy. As a gay guy, adoption is the only option I consider. I know for some that's a big deal. I'm glad she is with someone who finally appreciates her.

It sucks, but it's hard to blame the guy. That's a *huge* thing to drop on someone that late into a relationship. Also some people really want kids of their own, and that'd be a big blow to someone like that.

Good she found someone who doesn't care, I don't think it'd be that big of a deal for me.
 

Jokergrin

Member
It would be interesting to pose this case to transphobic people and ask if they would feel sympathy for her or if they think she's not a valid woman just cause she has no vagina and womb
 
I guess her first fiance did not want to consider adoption? On her end, if she was getting somewhat comfortable with her body, that was a huge blow. Awful guy. As a gay guy, adoption is the only option I consider. I know for some that's a big deal. I'm glad she is with someone who finally appreciates her.
We can speculate about what her former fiancé did or did not want to consider, if he's a religious fanatic, or whatever, but keeping such a condition from them until after they've asked to get married is a breach of trust.
 

my6765490

Member
Putting the physical pain of sex aside, wouldn't the fact that she can't physically have children be very attractive to (many) guys? At least if GAF is to be believed...
 

blakep267

Member
I guess her first fiance did not want to consider adoption? On her end, if she was getting somewhat comfortable with her body, that was a huge blow. Awful guy. As a gay guy, adoption is the only option I consider. I know for some that's a big deal. I'm glad she is with someone who finally appreciates her.
How is he awful without knowing so many things

- sex is a big deal in a relationship and if just having it puts her in constant pain, I wouldn't want to deal with that for her sake

- maybe he wants kids. Also can't fault him for that

- was this kept a secret the whole time from him before they got engaged?
 

davepoobond

you can't put a price on sparks
Putting the physical pain of sex aside, wouldn't the fact that she can't physically have children be very attractive to guys? At least if GAF is to be believed...

some people want to have biological children with the person they marry.
 
Putting the physical pain of sex aside, wouldn't the fact that she can't physically have children be very attractive to guys? At least if GAF is to be believed...




Mmh... no ?
Why would it be attractive ? I mean, I'm not saying it's off-putting or repulsive, but attractive ?
 

riotous

Banned
Putting the physical pain of sex aside, wouldn't the fact that she can't physically have children be very attractive to guys? At least if GAF is to be believed...

Sure, lots of guys don't want kids. Literally zero chance of pregnancy isn't a bad thing.

However considering she was engaged without having sex first she probably is quite conservative and/or religious herself; and anyone running in those circles usually has the expectation of children.
 
Sure, lots of guys don't want kids. Literally zero chance of pregnancy isn't a bad thing.

However considering she was engaged without having sex first she probably is quite conservative and/or religious herself; and anyone running in those circles usually has the expectation of children.


I'm bad at irony. Is that irony ?
 

CDX

Member
So......is it possible for her to actually enjoy sex? Are all the nerve endings and such in the right place? I get a bad idea that since they kinda just tunneled out a cavity for her that it'd be mostly perfunctory rather than pleasurable.

If what I read from quickly googling is correct.

Women with this condition have a clitoris, so they have at least that.

some people want to have biological children with the person they marry.

also according to what I googled.

Women with this condition have ovaries, and are able to have biological children via IVF and surrogacy.
 
Sure, lots of guys don't want kids. Literally zero chance of pregnancy isn't a bad thing.

However considering she was engaged without having sex first she probably is quite conservative and/or religious herself; and anyone running in those circles usually has the expectation of children.

The toast prophet has spoken!

What a shitty thing to go through. Have to feel for all involved, except the doctor.
 
Wow. I feel so sorry for her. Those guys who treated her like shit are real scumbags.

The partner that broke off the engagement was in a tough position. If he wanted to have kids, he couldn't stay with her. It's tragic because obviously it's going to make her feel completely devastated, but you can't stay with someone out of pity. If it was my wife though, I would have stayed but at the time I had no desire to have children, I just couldn't imagine life without her. Maybe in the long run it was for the best they split up.

Fuck those other shit bags though.
 

Kettch

Member
It's understandable not wanting to tell your partner something like that, especially at that young age, but it's also not fair to the partner. Having biological kids is a big deal to a lot of people, and I wouldn't deride someone for wanting that. I think it was just an unfortunate situation all around.
 

riotous

Banned
I'm bad at irony. Is that irony ?

No; if you don't want kids then being with a woman who can't get pregnant might be seen as a plus. At the very least that aspect wouldn't detract from the person for a guy who doesn't want kids.

What is confusing about this?

Generalizing that men don't want kids based on some things said on GAF is a bit silly though; GAF is full of parents who clearly wanted kids so it's not even a great generalization of GAF.
 

Linkyn

Member
She didn't tell her ex until after they were engaged? .....

I don't think it would be a deal breaker for me. Doesn't seem like it would change a whole lot tbh the heavy stigma has to be religious.

I can only speculate, but it can't be an easy thing to admit to, and you're looking at a young woman who's not fully completed her mental and emotional development (21 is definitely too young to get married, imo). Obviously, she didn't want to marry him before putting everything out in the open. As far as he is concerned, the only real impact of her condition is the fact that she can't bear children, which is inconsequential if they don't intend to start a family together. In that sense, one could argue that there's no point in her telling him unless she thinks the relationship is serious enough to warrant such plans.

It's a terrible situation. There's not much she can do about her condition, and while either alternative on his part is understandable, leaving someone because of a medical condition is horribly awkward (to say the least), although I don't want to exclude the possibility that him leaving was about breach of trust (ie her waiting so long to tell him).

That aside, I'm with you. The fact that sex is more uncomfortable and / or painful for her certainly makes things more difficult, but many people have their own physical and sexual peculiarities that a couple has to play to. And as for the fertility issue, there's always adoption (I know I would be devastated if my partner decided to leave me because of infertility). At the end of the day, she is still the same person. (Obviously, this last part is just my personal opinion, so no offence intended to anyone who disagrees)
 

Cimarron

Member
I guess her first fiance did not want to consider adoption? On her end, if she was getting somewhat comfortable with her body, that was a huge blow. Awful guy. As a gay guy, adoption is the only option I consider. I know for some that's a big deal. I'm glad she is with someone who finally appreciates her.

It's terrible but she knew this from the very beginning. Some things you need to disclose to a partner when things begin to get serious so that they have the option to opt out. It's unfair to drop a bomb like that when they are already so emotionally invested.
 

Amirai

Member
1 in about 5000?? I'm really surprised I haven't heard of this before recently.

The good news is they've found a way to make lab grown vaginal tissue for people with this condition. I don't know all the details, but this article describes how they tried it on four teenagers and it restored their vaginal sexual function: http://www.scientificamerican.com/article/lab-grown-vaginas-implanted-successfully-in-4-teenagers/

Data from these yearly follow-up visits show that up to eight years after the surgeries, the organs had normal function, including normal sexual functions, such as desire and pain-free intercourse, according to the study.
 
The partner that broke off the engagement was in a tough position. If he wanted to have kids, he couldn't stay with her. It's tragic because obviously it's going to make her feel completely devastated, but you can't stay with someone out of pity. If it was my wife though, I would have stayed but at the time I had no desire to have children, I just couldn't imagine life without her. Maybe in the long run it was for the best they split up.

Fuck those other shit bags though.

This is something you tell someone about before you get engaged.
 

MUnited83

For you.
Sure, lots of guys don't want kids. Literally zero chance of pregnancy isn't a bad thing.

However considering she was engaged without having sex first she probably is quite conservative and/or religious herself; and anyone running in those circles usually has the expectation of children.
Wut. Maybe in a world where contraception methods were never invented . otherwise your point makes no sense.
 
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