Intersex Peer Support::Bodies Like Ours

Caitlin is a couple of years older now and does some speaking for Bodies Like Ours.  She was a teenager when she wrote this.

When I was 15 and I still had not gotten my period (although I had been fully developed for some time), a friend talked me into going to her doctor. After an attempted pap smear, the doctor said she thought I had an imperforate hymen--a common condition where the hymen can not be broken under the usual circumstances and it also prevents blood from coming through the vaginal opening. She sent me to a gynecologist. The gynecologist very coldly examined me and told me that I did indeed have this condition. She brought my mother in and I was scheduled for a routine, in and out surgery where they would make a small incision in the hymen while I was under anesthesia. I was not that freaked out because it sounded so routine and I was assured that many other girls needed the same surgery.

The morning of the surgery I showed up at the hospital and I was pretty relaxed. They prepped me and moved me into the room, put me in stirrups, and put the anesthesia in my IV. I remember them telling me I would start to feel funny and the next thing I remember I was lying in a bed in a different room in a gown with a big pad between my legs. The gynecologist was standing there with me. I remember asking her if it was done and she very coldly said "yes". Then I asked her if everything went okay and the next thing I remember was me asking "...so I will never have children" Once again, she said simply, "Yes". I asked "...and I will never get my period?" and she said "Yes". I started to cry and asked for my mom. My mom came in and I don't remember much but I know they told me that I may experience some bleeding and to wear pads until it stopped. I got dressed and we left. I was in shock.

I had been diagnosed with Mayer Rokintasky Kuster Hauser Syndrome (MRKH), sometimes referred to as vaginal agenesis. This means that I was born without a vaginal canal and with either remnants of a uterus, or none at all. External genitalia appear "normal" (I don't like using this word, but I will get into that later) My chromosome type is 46XX ("normal" female). Some other symptoms associated with MRKH are kidney abnormalities, skeletal problems, and hearing loss. They still have not figured out the causes of MRKH. There is not much writing on MRKH except in medical journals and the articles usually focus on how to "fix" the wimmin affected, how to give them "normal vaginas" and "normal sex lives". Although people diagnosed with MRKH are told it is extremely rare, the truth is it affects one in five to ten thousand wimmin.

There are several ways to make a vagina for wimmin with MRKH. The most popular are the McIndoe surgery, where through painful and involved surgeries, a vagina in created with a skin graft and must be "maintained" for the rest of your life by either intercourse (to keep the vagina from closing up) or by inserting dilators regularly. The other popular method is through dilation. With this treatment wimmin are given plastic dilators that start small and gradually get bigger to put pressure on the vaginal opening and stretch a vaginal canal. This option, because it is not as invasive is usually tried first and if it is "unsuccessful" then surgery is usually the next step. (If you want to learn more about MRKH and the various treatments, please visit www.mrkh.org or www.mrkh.net)

My mom had to work that afternoon and arranged for my best friend's mom (who lived around the corner) to check on me to make sure I was doing okay. My mom and I were both upset and I ended up going to work with her because I didn't want to be alone. I remember bleeding and being sore for the next couple days. I guess that is what happens when you are given surgery for something you do not have.

When I got home that night I looked on the internet and found a support group for wimmin with MRKH. I sent an email out and a very kind womyn sent me a packet of articles about MRKH. I honestly don't think I read any of them. I gave it to my mother to read. I initially was not that upset to find out that I would never have children because I never had any interest in making my own babies. My family was devastated. Family members I was not close to and rarely talked to were calling to console me. I felt like I had just been told I had a week to live, the way they were acting. I was confused and still in shock.