It’s complicated….More on Sexuality and MRKH

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“It’s complicated….”

I find it somewhat unexpected to return to the topic of sexuality, sexual identity and MRKH.  But I want to pick up, oddly, near where I left off last fall in “Sex and the MRKH Girl…” A lot has happened since then, and I write today from a very different perspective. With a new understanding of myself.

MRKH is a pretty interesting condition because it “strikes” (i.e., we find out about it) just at the exact moment that our peers are developing their adolescent sexual identities into adulthood. They are learning to flirt, to kiss, to talk about sex and to experiment with it. To understand it, use it, enjoy it, control it – or be controlled by it. To play with it and to embrace it.

For many of us with MRKH – or at least for me – a diagnosis of MRKH meant much more than “you can’t have kids” (which is all I was ever told). It also meant freezing that development of an adolescent sexual identity. It meant shying away from flirting, talking about sex, kissing, making out….from playing and exploring and learning about a whole new side of my self as a young adult.

Now I am sure there are plenty of MRKH girls out there who don’t let their diagnosis stop them. Who go ahead on their sexual explorations anyway. And I am also sure that there are plenty of other ways in which adolescent girls’ sexual development can be stalled out or frozen or derailed. Everyone has issues – mine (besides MRKH) include: Catholic upbringing, a family life in which sex or sexual contact was not ever talked about, witnessing friends recovering from “bad” experiences (including date rape), working at a women’s shelter and witnessing other sorts of horror and sexual abuse.

So my hurdles include a mixture of those that affect many women and those that affect just us MRKH girls.

And in fact, I was actually still pretty reckless and bold – with my first sexual partner when I was just 15, only months after I found out about MRKH. And I met my life partner when I was just 17 – we’ve been together for 22 years. But the problem is, that I stopped pushing after that. I stopped exploring, testing boundaries, learning about what an adult sexual identity might look like. It became too terrifying to push – what if I wasn’t “right”? What if my body betrayed my deepest darkest abnormalities? What if my body was not capable of doing “it” right? What could I trust? And the more that I let my sexuality languish, the more desperate I became to hold onto my partner – because who else would ever want me?

So what it comes to at this point in my life is this: my next leap forward in my own personal development is to move beyond a frozen adolescent view of sex and sexuality and to come into womanhood as a full adult sexual being. I’m not sure how to go about doing this. But I plan to share some of my thoughts here.

I want to stress the importance of making this part of the journey to adulthood – of integrating the sexual side of one’s self. I think there are many reasons that women don’t make this journey. I encourage you not to let MRKH be one of them.

Finally, in case I have any teen readers (which I hope I do!) or their parents – please know that I don’t intend this to be an “erotic” blog. I don’t intend to be explicit, but I do intend to be direct. Remember, I also write from the perspective of the parent of a beautiful daughter. And that is a big part of why I am doing this: I know that unless I make this journey on my own, I will never be able to guide her through it in the future.

I also hope that others with MRKH are able to travel this path much earlier in their lives than I am. And I know that the fact that I am only now finally able to begin doing that may strike some as odd….but that’s ok. We all do this at different times in life. And my time is now.

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Happy 1st Birthday to My Lovely Daughter!

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To all my lovely readers: Sorry to disappear for a while. A lot has happened, but I’m not going to post the blow-by-blow here. Instead, I’m posting a piece I wrote a month or so back but never got around to posting. It’s about me and my daughter:

***Originally Written December 19, 2012***

It’s official! I’m a real woman and I have MRKH!

Some of you may think this a strange way to reenter to the blogosphere…So…I have a confession to make: until yesterday [December 18, 2012], I was fairly sure that my condition was MRKH, but I had never had that confirmed by a medical professional.  (Read my posts above for description of my rather traumatic initial “diagnosis” — which did not include any naming or labeling of the condition — and the complete refusal of anyone in my family to talk about it afterward.)

When I started blogging about this a couple of months ago (at age 38), it was the first time in my life that I had any inkling that there were other people like me out there – that this was a condition that affected lots of women, and wasn’t just some freak abnormality that I suffered alone. And then there were all sorts of doubts about what it could mean: because I had no official diagnosis, there are a number of different syndromes that it could be, each scarier than the last (…which was another reason that I resisted looking into it.)

But there is power in knowing that you aren’t alone. So I reached out and started this blog. But before I could continue any further, I needed to know that MRKH is what I have. Without confirmation, I felt like a fraud.

And so, about a month ago, I went to see a doc who specializes in MRKH. I had to track her down off of her web bio – I figured that searching the local research university hospital faculty would have the best chance of turning up a doc familiar with this.  I really lucked out. She is kind, sympathetic and reassuring – this isn’t some freak accident of genetics or whatever else – there are many women affected by it and science is only just beginning to understand it. She had a plan. And that was reassuring, too.

I had blood work done: kidney function normal; chromosomes register a solid 46-XX (with a few 45-Xs thrown in, because I’m nearly 40….as you age, some of those Xs just seem to drop out…all pretty normal). I had a full MRI: looks like I have two kidneys and two functioning ovaries. Whoo hoo! For the first time in my life, I feel like a “real” woman. It’s an amazing feeling to think that I actually have this in common with my sisters, when for nearly 25 years I have shied away.

So. To those of you out there who are young and are just learning about this (and to their parents): please, get the tests done. Talk to someone about MRKH. Do not feel alone. You’re not weird or abnormal. You’re just you.

Oh! And since tomorrow is my (adopted) daughter’s first birthday, I will share with you what the doc I met with said to me: “Think of it this way,” she said, “If it weren’t for MRKH, you probably wouldn’t have her in your life.” And with that, for the first time in my life, I am actually THANKFUL for my MRKH.

With much love to all my sisters out there,

Have a Merry Christmas and a Very Happy Holiday Season!

 

Sex and the MRKH Girl

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Ok, so several of you have asked about sex and MRKH. So let’s get to it. I have a lot of other crazy stuff going on in my current life, but rather than vent all that here….I’ll proceed with a post I started a few days back:

First, let me explain a few things: I was raised by plump, Midwestern, meat-and-potatoes-and-canned-peas Catholics who had sex twice in their lives, resulting in me and my sister. (Of course, let’s not talk about the fact that I was born just 6 months after my parents were married. (And no, to my knowledge, I wasn’t some sort of miracle child that survived after only 6 months gestation.  And also never mind that my mom was already 30 and my dad 41.)

I went to a Catholic girls’ high school. Enough said. Also, in case it matters, I’m hetero and I’ve been sexually intimate with exactly two men in my entire life (one guy in high school and my husband). I also define sex as much more than which body parts go where – to me it’s about intimacy, vulnerability and joy.

So. Back to it. I suppose knowing that there is absolutely no risk that you’ll get pregnant could be extremely liberating to a healthy, sexually active young woman. As RS says: “We should be f—ing all the time! When I found out you couldn’t get pregnant, I was like “Wow! This is Fantastic!”

I mean, look at it this way, ladies: this certainly is one thing we have over all the women out there who have functioning uteri: we can have all the sex we want and never worry about getting pregnant!

And I suppose that’s one way it could go. Maybe I’ll get there one day (but see above for the other hangups I might possibly have to deal with first…).

But don’t get me wrong – there have certainly been times where I am thankful that I’ve never had to deal with a condom or the pill. (Someday I will post about the extremely awkward 2.5 hour car ride I took with a young intern who apparently thought it would impress her boss to ask all about which brand of the pill worked best. No, I am not kidding. I did fire this young woman later for being completely incompetent, but I hardly think the topic work-appropriate, even if you do think your boss has a uterus.)

So my experience? Hmmm. It’s complicated.

The Power of a Secret: Part 2 – Friendships

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If you’ve followed along, I went off to college at age 16 to start over. I had to escape an all-girls’ high school where, even though no one had any idea anything was “wrong” with me, I felt so outside – so different – that it was all just too painful. 

I’ve said this before, but it bears repeating: I really never connected my need to escape and my diagnosis. I was told I didn’t have a uterus and wouldn’t have kids. I put it in a box and shoved it away. I didn’t have a name for it or any resources to learn more about it. I just thought I was a freak and, well, that’s life. I could just hide it from everyone (including myself) and move on with my life.

So I went to college. I somehow figured out life in a dorm with a roommate. Luckily enough, she was a very private person and we each kept a polite distance. I can’t say whether she sensed the walls around me or whether she had enough walls around herself, but we somehow managed to live together without her asking too many personal questions. (Like: Where do you keep your tampons in this tiny room?) I wish I could have connected with her on a more fundamental level, because she’s an amazing person.

Around guys, I was one of the boys, always trying to out-do them, rarely giving them and excuse to think of me as potential girlfriend material. RS tells me now that most of his friends have at one point or another thought that I really didn’t like them. That I was snobbish or standoffish. (I probably was, frankly, but only out of my own insecurity.)

As for RS, himself, I met him during this period in college and somehow, the first time I saw him, I knew I wanted to marry him. Sounds completely insane, but I just knew it within my soul. It took me almost ten years to admit that. But this deserves a post of its own…..more later…

I also started gravitating toward other people with secrets. My friends included quite a few who had survived date rape or other forms of abuse.  And gay men. (I mean, think about it: who is the LAST person on earth who is going to want to talk about vaginas or ask to borrow a tampon or advice on birth control? Gay men. Excellent qualities in a friend for an MRKH woman!)

I’m pretty sure that most of my friends who are survivors of abuse at one time or another assumed that I was also a survivor. (I’m not. But it’s almost like I wanted to be included in a supportive community so badly, one where you could have secrets and it was ok, that I started and ran a rape crisis line in college (after a friend was date raped) and later spent several years working at a domestic violence shelter.)

Most of my gay, lesbian and bi friends report that at some point in our friendship they have assumed that I was gay, too. (So far in my life anyway, the people I’ve been attracted to have all been men. Nothing wrong with your gaydar, folks!  I just fooled you by having a different kind of secret!)

People with secrets are likely to assume that if you’re holding something back, you have a good reason. And the power of a secret is that if you hang with others who have secrets, they will assume you have the same secret. It’s easier for everyone: we all feel together and accepted.

But I’m not sure it helps us grow.

If this stuff remains secret too long, it just eats away at your soul until you don’t recognize yourself.

I think I’m nearly ready for this to stop being a secret anymore.

The Power of a Secret: Part 1 – Self-Image

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Until very recently, I don’t think I even realized how MRKH has affected a number of aspects of my life. But I place before you the following thoughts:

1. Self-Image.

For years, here’s what my inner voice has told me about relationships: “Who would want me anyway. I’m a freak and I’m lucky to have anyone love me. And since apparently I’ve been incapable of reciprocating that friendship (or love or enough physical pleasure) is further proof of how damaged I am and that no one in their right mind should love me.”

My self-image, however, is of this free and fierce woman, loving her life, spinning a shining web of social connections, laughing a lot, and doing the impossible. That’s my Alice in Wonderland. But I could only become her by putting on a shit-ton of armor – or maybe more like a space-suit — to make the world on the other side of the glass inhabitable to me. So for years, I cultivated a tough personality. A strong woman who wasn’t going to depend on anyone. I went out wearing my space-suit and did accomplish a lot in that alien world.

But deep down, there’s me on the other side of the glass….hoping desperately to walk through the glass without the space-suit and just breathe the air.

An important step on my journey this far has been to start taking care of myself and being the person who I think I am – being Alice in Wonderland.

A few months ago, I began to realize that I had a habit of saying to myself “Oh, I could do that if I felt like it. I don’t need to prove it by trying.” I think I have done this a lot and it’s left me feeling like a fraud. So one of my first steps was to complete my first triathlon. I had spent years dreaming about the challenge of it and just never found the time or couldn’t convince others to train with me.

So finally, I just signed up and did it myself. It’s been a first step on a journey toward integrating my Self with my Alice in Wonderland.  It’s just one step and (despite a lot of other pain I’ve expressed here) I am feeling better about myself than I have in years, reminding myself that I am a beautiful, desirable, sexy woman who is capable of being in the world.

Just breathe.

Next: Part 2: Friendships

I am not my MRKH and other relationship issues

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Last night my husband (let’s call him RockStar or RS for this blog – because deep inside, he is a strong, beautiful rock star. That, and he’s always wanted to be one. J) said to me:

“You know, I think it’s great and all that you’re doing this blog, but you can go through all this and deal with the MRKH and you’re still going to have your issues.”

Huh.

Ok…deep breath. So at the time, the whole thing pissed me off like a big ol’ slap in the face. But let’s pick this apart, because sometimes, we all need a little slap in the face to wake us up.

So before I totally dismiss the comment, let’s look at it:

I don’t disagree with an underlying idea embedded in the statement: I know that of course my issues aren’t “just” MRKH. Each of us is more than just what happens to us or what conditions we face. We are all something much more than that. We all bring to our experiences something indefinable that is the essence of who we are and contains the tools we have to deal with those experiences.

But that doesn’t mean we can ignore our experiences. For about 25 years now, I’ve basically pretended that MRKH didn’t matter. It’s what I wanted to believe. It’s what my Alice in Wonderland (as opposed to the one stuck on the other side of the looking glass) would believe, because it doesn’t exist for her. And I have constructed a damn fine life for myself, for years telling myself that I was blissfully happy.

Problem is, there are always problems. Just little disappointments, doubts…but if you don’t deal with them…well…  But ok, that’s probably a different post. Signing out for now…..

Aside

Sometimes I feel like I have lived a lot of my life from the other side of the looking glass. On one side is me. On the other side are people having a glorious time at the mad hatter’s tea party. They laugh. They flirt. They make raunchy jokes. And I press my hands to the glass, and at times, I can convince myself and others that I’m in that place, but I can’t really break through.

Today, I feel like I’ve stepped through it.  Maybe it’s a temporary feeling, but for now, I’m going to soak it up.

Even before my visit to the doctor in 1988, I think I had begun to think of myself as different. Not THAT different, mind. I mean, it was still theoretically possible that I was just a late bloomer. But then…suddenly…I really I WASN’T like those other girls. I would never again be able to giggle at a slumber party about getting my period, fantasize about getting married (‘cuz who would ever want damaged, abnormal me?) or having kids.

I have a distinct memory, from a year or so before my diagnosis, of a babysitting job. I was sitting in a child’s room, reading her a book before bed. I had a vivid fantasy of looking up at the open door and seeing my future husband standing in the doorway, silhouetted against the light from the hallway, looking on lovingly.

And then fast forward to the words “no uterus…blah blah blah…never have kids…blah blah blah” ringing through the air. That fantasy slammed shut. It was too painful and costly to keep that dream alive. I became very good at pretending I didn’t want it at all. A glass wall began thickening around me. I stood on one side and peered through at all I had once known and thought would be a normal life.

Now, I was not a giggly, girly-girl to begin with. I was, by all accounts, a pretty serious kid. But after 1988, I gave “girl talk” a wide berth and steered clear of any remotely potentially awkward social situation, which, of course, included any situation in which someone might possibly mention: boyfriends, flirting, kissing, making out, sex, marriage, babies, birth control, periods, tampons, cramps, PMS….

(Just as a reality check here, I ask: Can you imagine high school without talking about any of these things? Can you imagine constructing a life in which you can at all times avoid even the possibility that someone would mention these things? Now add to this that I was at an all-girls high school. Now try to imagine….)

So it’s no wonder that a few months after my diagnosis, after a brief flirtation with suicide, I decided to get the hell out of Dodge. I went off to college in another state – at age 16.

Of course, I have to note that it has only been in the last few months that I have actually put those three pieces together in my mind: MRKH diagnosis, suicidal thoughts, and (essentially) running away. It seems incredible to me now that I never connected the dots. But there it is.

Since I’ve started down this path, I have started to feel whole. Like pieces of me that I never understood are starting to fall into place. Maybe I’ll get to eat the teacake after all.

Through the Looking Glass

Hello world!

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Let me begin at the beginning. I was 15 when I was diagnosed with MRKH.

Wait. Back up. I was 15 when I was unexpectedly whisked off to a surprise visit to a gynecologist to find out why my 13 year old sister had started her period and I hadn’t: Getting into the car to go to school one morning, my mom announces a little “detour.” A visit to a doctor.

(Really, mom? THAT’s how you do this?)

And then, because I balk…because I’m already traumatized that my baby sister is a “real woman” already and I’m not…my mother decides that threats will work best.

(VERY clever, mom.)

If I don’t get into the car, I’m told, she’ll call the school and tell everyone my secret. That there’s something wrong with me. That everyone else I know has gotten their period by this time and I haven’t. It felt like some sort of topsy-turvy, through-the-looking-glass version of that scene in Yentl where they hang out the sheet to prove she’s bled on her wedding night. As if it wasn’t enough to hide in gym class already and pretend to empathize when the girl in the next locker complained about cramps and asked to borrow a tampon.

(It should also be noted here that I distinctly remember a slumber party, around age 11 or 12, at which I sighed and said wistfully “I can’t wait til I get my period!” Really. I said that. Oh, I also might note, just for context, that around that time, I had to ask my mom to drop me off at Sears because I wanted to buy my first training bra. She said ok, relieved that she didn’t have to be the one to buy me one.)

So. Into the car. Off to the doctor who sticks a cold speculum up my vagina. Ok, well it didn’t take him long to realize that it wasn’t going very far. So off to the hospital across the street for an ultrasound.

(Isn’t an ultrasound a test for pregnant women? I can’t be pregnant…I’ve barely even kissed a boy. And I haven’t gotten my period yet. Great. The only 15-year-old on the planet to get an ultrasound.)

After that, back to the first doc. And I hear this: “Blah blah blah no uterus blah blah blah never have kids blah blah blah.” That’s it. That was the full and complete extent of my medical knowledge until many, many years later.

And that’s pretty much the last time my parents and I spoke of it. Except this one time, when I was 25 and getting married. My mother said: “Your dad and I feel really bad about the…ummm…well…you know, if you and T ever want to have…umm…kids…you know…well, we’ve set aside some money to help you out. Ummm…We feel really bad about it.”

Yup. That’s it.There’s more to the story, of course….but that’s another post.

(And just for the record, my therapist, hearing that story a few months ago pretty much fell off her chair. Aren’t you angry she asked? Ummm. no. Not really. Just sad. Just very, very sad.)

So to the MRKH girls out there: If your mother did better than this, feel blessed. And to the Moms out there (I’m one too, now): Please try to do better than this. If you can’t, please send your daughter to me. (or try www.beautifulyoumrkh.org for resources.)