Okay, I'm coming out: I was born without a vagina. No uterus either. No Fallopian tubes. I do have a dandy pair of ovaries. But... thirty-four years after diagnosis and thirty-three years after corrective surgery, there are days when I still feel like a freak.
And that's my fucking problem, every day. It'll stay my fucking problem until I'm dead. And that plain sucks.
WYFP is our community's Saturday evening gathering to talk about our problems, empathize with one another, and share advice, pootie pictures, favorite adult beverages, and anything else that we think might help. Everyone and all sorts of troubles are welcome. May we find peace and healing here. Won't you please share the joy of WYFP by recommending?
It's not my turn to do WYFP tonight, but I don't see it up, and this has been such a sucker punch in the ovaries today, I just had to write and post this. Apologies to whoever was to host/ess tonight if I jumped the gun.
It's called Muller-Rokitansky-Kuster-Hauser Syndrome. I'm one of the luckier ones -- I don't have kidney or urinary tract problems.
I'm not the only one. According to MRKH.org, this occurs anywhere from 1:5,000 to 1:1,000,000 women. If you've got two X chromosomes, you might have this birth defect. But, here's the thing: there have been only about 20,000 cases of this reported worldwide. And yours truly here is one of that 20,000.
I'm not one of the luckiest ones, you see. Mine was severe enough to require surgery. Some MRKH women, I've recently learned, have just enough vagina that they can stretch it using dilation techniques. And these women might not necessarily report it, or their families might not report it, if the patient is young.
How did I suddenly come by this information? Well, it was the healthcare reform issue that sparked it. I was going to write a letter to President Obama and his chief of staff about this pre-existing condition of mine and why public option would help me. I decided I needed to do a web crawl for statistics and links to show how much of an healthcare FP this really is. Well, I found it, all right. I started around 2 PM, have been at it all day, and I haven't cried this much, hurt this much over my diagnosis in years. Come to think of it, not since my previous husband ripped into me for not wanting to go through in vitro and surrogacy.
A lot is known about this syndrome, and a lot isn't. There are some indications that there might be a genetic component, but no-one's really sure. If there is, then I really made the right decision to not go through IVF/surrogacy -- I would never wish the heartbreak of this syndrome on any daughter or granddaughter of mine.
I could write more about this, but I want to get this up now. I've been hurting all over again all afternoon, and I'm sure I'm not the only one.
Addendum:
I was diagnosed at 14. I wore a 34B, had the start of acne, and looked years older than I really was. But I wasn't having periods, and it made my mother really nervous. I had to have a physical prior to a trip to Europe, so off I went to the GP. He couldn't feel my uterus through palpitating my abdomen. He told my mother to get me to her OB/GYN pronto. That doctor ordered a laparaoscopy. BINGO! Two beautiful ovaries, and nothing else. Nada. Zippo. Zilch.
Here's the funny part. I didn't ask questions. I jsut thought it was part of the physical stuff. If there was a problem, they would have told me, right? Wrong.
A year later, my mother took me for a drive. She told me about the diagnosis. Stunned, I asked her "Does this mean I can't have children?" When she said no, I burst into tears. I wept and I wept and I wept until I couldn't breathe. She sat like stone, driving. I did not know that she was involved in a slow guerilla war with Blue Cross Blue Shield. She had become a school teacher after my father died, and that was our new carrier in 1971. Surgery was indicated, and BCBS didn't want to pay.
The McIndoe surgery according to BCBS, was "experimental." Bullshit. It had been done for close to 25 years. They claimed this was a pre-existing condition. Actually, it was a birth defect that didn't even come across our radar until I hit puberty.
Mom won. In 1977, I had the surgery at Johns Hopkins. I had three weeks of hell in the hospital. They doped me with morphine and codeine -- they had to, I had to be constipated throughout the recovery. I wasn't allowed to move for two solid weeks so I wouldn't pop a bleeder. When I think about all the blood vessels down there...... And I had mild complications. I had to have a catheter for urination, and I developed blood clots. I woke one night in a small puddle of blood, and the doctor had to come syringe the clots out of my urethra and bladder through that damned catheter.
The surgery was a success. My life has been a good one overall, but it hasn't always been happy. I've been treated like a toy, as something inferior to women who can get pregnant, and thus disposable. Other women can really be cruel when they know, or suspect. Some people are just clueless: when they ask if I have kids, I say, "No, I can't," and they don't have the sense to drop it. I bruise internally, I narrow if I'm abstinent, and, trust me, the stretching forms are unbelievable sometimes. MRKH is literally a fucking problem!!!! And always, always, there is this sense that I am a bit of a freak.
But I am a woman. I have always been a woman. And what I went through isn't much different surgically than what Robyn went through -- less extensive, but still difficult and traumatic. And goddamnit!!, she is every bit my sister. My condition needs to be covered and protected fromteh insurance company bean-counters just as much as transgender operations, cancer, heart procedures, you name it. BCBS damn near denied me my sexuality, and every other insurance company out there will try to do the same to any other girl born with this syndrome in this country. And this, Mr. Rahm Emanuel, if you are reading this (I doubt it, you're just too smug), is why I am not fucking stupid when I say we need a robust public option at a minimum. My body, my choice, my fucking right to be as much of a woman as I desire!
Update: Rec list??? Holy cow, guys, thanks!