The “I” is often added to our community’s acronym of LGBTQI, but what is it, what causes it, and how is it related to sexual preference? A lesbian shares her experience of Congenital Adrenal Hyperplasia and genital surgery.
From the moment I can remember, I knew I was different. I knew this when my parents would take me to the doctor every 3-6 months. I knew this every day, when I took medication morning, midday and night. Growing up, I knew I had to do these things or I would die. This is because I was born with Salt-Wasting Congenital Adrenal Hyperplasia or CAH; a life threatening genetic adrenal gland disorder affecting the body’s ability to regulate blood pressure, blood sugar and infection response.
Because of CAH, I also knew my vagina was a little different than other females. I knew this because I had two genital surgeries when I was a kid. Two surgeries, I am glad I had. Two surgeries, that opened my vaginal canal and allowed me to menstruate without the risk of pain or infection. Two surgeries that were for function not appearance.
As of late, there has been a growing discussion concerning children born with conditions classified as Differences in Sex Development (DSD). The discussion has turned into a movement to ban genital surgery until a child is old enough to decide for themselves. On the surface, this seems very straight forward. I agree, parents or doctors should not be electing genital surgery purely for cosmetic reasons. And yes, many people have been hurt by early genital surgery. But because the movement is not being led by CAH individuals there are many facts regarding my condition that have been purposefully left out. Facts, that I believe bring context to what CAH is and its relation to genital surgery.
The most important fact I often see left out is how CAH is a rare medical condition affecting the body’s response to infection. In CAH kids and adults, any time we get sick it is harder for our bodies to fight an illness and we can go downhill very fast. For CAH girls who are born with a vaginal canal that is fused externally, this can become a scary situation if there is no clear route for the menstrual cycle to exit. If a young CAH woman starts her period unknowingly, and her period can’t exit she could quickly become very sick.
Another misrepresentation, is the notion that parents elect surgery to make sure their child grows up to identify as a girl. From my own experience and from speaking with many CAH individuals this is simply not the case. My parents never forced me to be a girl. They couldn’t care less what gender identity or sexual orientation I identified with, as long as I was healthy. And this is still the case for me today.
Lastly, I always hear the opposition claim there are zero positive outcomes with early genital surgery. This might be true for some DSD conditions but it is simply not true for CAH patients. The facts are the vast majority of CAH women are happy they had early genital surgery and they would not change a thing. The vast majority of us are able to orgasm and have a normal sex life. Personally, I believe if I didn’t have surgery as a child, I would not be happy today. Surgery helped reduce the number of urinary tract infections I was experiencing. Surgery allowed me to have my period through my vaginal canal, without the risk of infection. Surgery allowed me to grow up in a body I felt comfortable with.
Today, as a lesbian woman, I am proud to be a part of the LGBT+ community. As I’ve watched the surgery discussion grow, I’ve seen CAH included under the DSD umbrella and the discussion of surgery turned into an LGBT+ matter with the term intersex. This is the term used by much of the LGBT+ community to describe DSD conditions, which has led to the notion that being “intersex” makes you gay. But CAH did not make me gay. The idea that a medical condition automatically makes someone gay, should never be pushed. Identifying as a gay, lesbian, trans or all of the above, is not a medical condition, period. This term intersex is not one that I identify with myself. Mainly because it is broad and carries a lot of confusion of what it actually means. And honestly, I have never felt “inter” sex or in-between sexes. Just because I was born with an enlarged clitoris does not mean it was a penis, nor will it ever be. I prefer to state exactly what I have and not create extra labels that bring confusion. I prefer to tell people I was born with a medical condition that led to an enlarged clitoris. Plain and simple. If people who have CAH or other DSD conditions want to identify as intersex and part of the LGBT+ community I think that is great. But I do not believe just because you are born with a medical condition means you are automatically labeled a term a person may not identify with.
As a person with CAH and a member of the LGBT+ community, I ask us all to take a step back and try to understand CAH. It is a complex adrenal condition, that I myself learn more about every day. When discussing any medical condition, I believe it is vital to include all relevant information when deliberating changes to care and medical access. I ask, instead of pushing for a broad ban on surgery, we look at each individual condition and think about the medical implications of CAH. I ask, the LGBT+ community to embrace our inclusive spirit and listen to the voice of the CAH community.
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