Caitlin’s Story

Okay, first I want to say that this is very, very personal for me and that I am still very angry and sensitive about this. I am writing this to help myself heal and to educate and hopefully help others. We should not have to be ashamed and regularly hurt by people’s ignorance about intersex conditions.

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.

We found out that a doctor who performed the McIndoe surgery and specialized in MRKH practiced in Atlanta. I had decided that I wanted to have the surgery (at the time I thought it would be a quick and easy way to be “normal”) so my mom made an appointment with him. A close friend of the family who was also a doctor went with us for support and to advocate for me. When I went to see this doctor, he was very cold. He was not willing to treat me because he claimed that he felt I was too young to begin treatment. My mom and our friend assured him that I was mature enough to handle this if it was what I wanted. He was not supportive at all. He did not try and educate me about MRKH, ask me what I wanted, how I was dealing with things, or anything of the sort. I still to this day feel like he really just thought I was too young to be making my own decisions about my body and my sexuality and he did not want to participate in me being a teen who was having intercourse. It is funny because at the time I was not even interested in having intercourse with anyone or anything, I just wanted to feel normal. I wanted to be able to make the decision to have sex when I was ready and not have to make a doctors appointment so I could have a vagina to have intercourse with.

The 3 of us left his office angry. I was freaking out because there was no way in hell I would set foot back in his office and since I was told this was so “rare,” I was scared that there would not be any other doctors in Atlanta that would know anything about it. My mom made some phone calls and was referred to Dr. T. We were told that he worked mostly with couples that were struggling with getting pregnant, but that he was also familiar with the dilator method. At this point, as you could imagine, I was a little nervous with doctors because I had been made to feel like a freak and I had been poked and prodded numerous times in the past couple months. I decided to at least go in and talk to him.

We made yet another doctor appointment. When it was my turn to see the doctor, he called us into his office–away from stirrups, speculums, and examination tables. He was very friendly and warm and when we sat down, he said, “Ask me anything you want”. We talked for about an hour and he answered questions my mother and I had. I felt very comfortable with him because he treated me like a person and not some specimen. He said that he had worked with many other wimmin using dilators and that he would be able to work with me, if I decided to use that method. I decided that I wanted to get the dilators and try them out. When we finished talking he asked if he could give me an examination because he wanted to measure my “dimple” (the opening to where the vaginal canal would be. Some wimmin have larger ones than others). Because I felt comfortable, I allowed him to examine me. I never thought I would feel comfortable with a male gynecologist. He ordered the dilators and a few weeks later I returned to get them and learn how to use them. After that, I brought them home, tried them once, and put them in the back of my closet.

Over the next few years I rarely told anyone about having MRKH. I was embarrassed and I felt like a freak. When I would tell people, they would usually look at my funny and ask a few questions. I would pretend to relate to the complaints of bleeding every month (I honestly could relate to pms since I still have my ovaries) and I would bullshit when someone would ask to borrow a pad or tampon. Even in sexual relationships I would not tell about not having a vagina. I would try to avoid any type of penetration by making up excuses (“I have never had intercourse so it hurts”) or by non-obviously preventing my partners from penetrating me. To this day there are people I have been with who do not know that I have MRKH.

I suffered silently. Sometimes I would feel robbed of the right to decide if I wanted to make babies, even though I never had been interested in having them. I would read feminist books that would talk about loving to bleed every month and bleeding at the same time as friends and using the moon to follow their cycles and I would feel robbed of this celebration of my body.

In September 2001, I told the partner I was with I had MRKH. She did not make me feel like a freak and I guess it made sense to her why I had been weird about certain topics in the past. In October, we flew to San Francisco to attend a radical queer conference. For the most part, the conference was not that great but at a workshop that some trans men and wimmin held to discuss surgery, an intersexed womyn mentioned that they use dilators to make intersexed children vaginas if their penises are deemed too small. In my head something went off. I knew there was a workshop the next day about intersexed conditions and activism. I decided I had to attend it.

I sat through the workshop and listened to the stories of the people there. One had been mutilated as a young child, one who had been put on hormones their entire lives to assure that she appeared a “normal” female, and another who grew up with her large clitoris intact. The whole time I felt like I was going to start crying. I was scared and confused. Afterwards, I pulled aside the person who had brought up dilators at the trans workshop and had spoken at this one as well. She had never heard of MRKH but said it may be an intersex condition. She was supportive and told me to call her before I left the bay area. I never did, but talking to her got me researching intersex conditions. I was pretty shocked and I honestly felt kind of stupid because I had been involved in the queer and feminist communities for some time, I had done some reading (definitely not enough) about intersex conditions and I had not had a clue that I could have been intersexed!

When I got home, I started to research and found out that I was indeed intersexed and I started to read everything I could find about MRKH. I have started to talk some about being intersexed, but I am still extremely angry, hurt and confused. My partner has been extremely supportive and that has been very helpful. But, I am hurt on a daily basis by people’s lack of understanding of what people like myself and other intersexed children go through. People who claim to be radical, who claim to think genital mutilation in Africa is wrong, but support genital mutilation in the US, people who are sure to include gay, lesbian, bisexual and now trans people in their mission statement but could not define intersex if you asked them. I am sick of people assuming that if I am womyn identified and not trans, that I have a vagina, and a uterus. I am sick of people assuming that if we are sexually involved and they are touching my genitals that they can put a finger inside of me. I am sick of feeling like I have a condition that needs to be “fixed”. I feel more confident talking about my experiences because I know that there are others like me. I do not feel so isolated. However, I am disappointed in the queer communities lack of knowledge about intersex issues.

Being born without a vagina is not inherently dangerous. I do not need any surgery or dilation to have a happy sex life. Some people choose to have a vagina made and I support 100% their right to make an informed decision to get one. At this point in my life I am choosing to keep my body the way I was born. I have major problems with the way myself and other wimmin with MRKH are treated. No thought is given to our psychological state after being diagnosed–only to making us “normal” wimmin with vaginas that we can use in heterosexual sex. I have read so many horrible stories about MRKH wimmin’s experiences with doctors. And I totally relate to them. I should not have been sent for surgery before my doctor made sure that I had a hymen. This could have saved the physical and possibly some of the emotional trauma of my diagnoses. The first “specialist” I saw should have respected my wishes and given me information about the various treatments and let me decide for myself if I was old enough to handle surgery or dilation.

I am still struggling with accepting myself and my body. Don’t get me wrong, some days I wish that I had been born with a vagina and I wish that I didn’t have to deal with all this shit. However, the thing that hurts me the most and threatens my self-esteem the most is other people’s attitudes and ignorance.

One of the major reasons I have written this is to make the queer and feminist communities more aware of MRKH specifically and intersex issues in general. Just as people have started to learn about trans issues and be careful about language and assumptions made about gender, people need to educate themselves about intersex issues!! There are many people who have MRKH and even more that have other intersex conditions. I am sick of being ashamed and invisible and I now KNOW I am not the only one.

Please also read “the Missing Vagina Monologue” By Esther Morris at www.mrkhorg.homestead.com/tiles/ORG/AdditionalMonologue.htm and visit isna.org to find out about some of the activism going on to educate people about MRKH and other intersex conditions.

There is a lot more that I could say. I would like to see dialogue happen about this. I reserve the right to not answer any questions that I feel are offensive or make me uncomfortable.

Caitlin

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