"Just turn out the lights"

[Peter]

Today, I had an appointment with a urologist to discuss possible prostate problems. Since I generally avoid doctors like the plague, and would never have the courage to see a doctor directly about my history of genital ambiguity, I decided that I would ask him about the lips of my perineum.

My mother said that I was born with a vaginal cleft, and lacked internal female organs. I had infant genital surgery for undescended testicles. I assume that the vaginal cleft now forms my scrotum, as that is what would be expected under the general principles of developmental biology. However, I also have strange lips of the perineum, that are about 2 inches long, and unfold to about an inch and a half wide. In the past, a senior member of the ISNA medical advisory board had told me that these lips were probably the result of a minor form of cloacal exstrophy. I now have reason to believe that acampomelic dysplasia is probably at the root of my developmental issues, due to also having been born with severe hip hyperplasia, and a club foot.

In part, my renewed interest in this topic was brought about by a recent blog that I read elsewhere on the web, where it was held that it is possible to have two penises, but impossible to have both a scrotum, and a vaginal opening. So, with an amused smile on my face, I asked the urologist if he could take a look at the lips of my perineum, and tell me about the origins of my "impossible" features. He smiled, and said that he could probably not tell the the origins of the features, because "that is why they call them ambiguous genitals".

He examined the lips of my perineum, and said that they were a "fold". He advised that if sexual partners complained about my genitals that I should "just turn out the lights". He also said that it is best to "keep private things private". I found that last line really amusing due to my work with BLO.

Peter

[Kailana]

with that last comment.

"finding his comments funny do to your work on BLO".

I was wondering if that is what makes us so different? then what the vast majority of doctor's expect us to do?

Like why keep us or our bodies private?

I honestly think that once I started sharing then I found some semblance of normalcy. While keeping things private just seemed to get me further and further into despair and depression.

So I am curious now Peter, would you be well more open to discussing the many variations in developement that many doctors don't quite understand that there is nothing wrong with any of us just cause we had bits and pieces that are not so normal in thier opinions?

I think one of my big issues is with a technician who asked a simple question, "Why would you want any one to know you have those inside"?

My response. "Because it is a part of me that I identify with."

He did not seem to understand that simple fact and I wonder if perhaps this is the overall main issue with people, specifically the medical community being taught for so many years that we must be normalized into a gender that others can accept when the real trueth is that each of us has our own acceptance of what we are and sometimes it is in opposition to what others have chosen.

[Dianne]

I have been trying to live "out front" but I am also dating. The two don't seem compatible since the average straight guy dones't know anything about Intersex and immediately they imagine all kinds of wierd stuff and freak out.

[Peter]

I am open to discussing unusual anatomical features. Personally, I am glad that my mother told me that I lack internal female organs. I am glad that my unusual anatomical features are external. One doctors said that my external features are basically an anal abnormality Another scientist violently disagrees with the idea that the lips of my perineum are an anal abnormality. The features remains the same, even as there is disagreement as to the biological nature of my features.

If a person believes that they have internal anatomical features that are not recognized by the medical profession, then they are in a difficult situation. You mentioned in an on-line video that you think you have certain female internal anatomical features. I wish you all the best on clarifying your concerns. If you ever get to read Ludwig Wittgenstein's remarks on searching for hidden underground water, you will get a pretty good idea about what I feel about the requirements for understanding hidden features of the world. There may or may not be hidden underground water where one believes it to be, and it is important to be able to provide a plausible connection between actual underground water and the belief that there is water underground. I find your rare karyotype to be plausible, and am hoping for the best on your other features.

Peter

[Kailana]

hiya peter, I wasnt so much worried or willing to discuss myself in this thread. I was more well interested in your thoughts on the sharing aspect of having unusual anatomy that even doctors dissagree with.

I am not so interested in my own, as surgery in 2002 totally ruined what i had so for me it more of an issue of what is left, and the surcical after affects that they barely acknowledge and chose not to explain why they even mention in the first place if they are unwilling to explain why there are several vascular bundles that go to nothing now, and surgical scarring that they keep editing out even though it is easy to see even with some of the crappiest imaging, ie ultrasound.


So I was more interested in your comment on the "Some things should be kept private".

Do you really think that we shouldn't Share our private parts with the world or do you think it is a good idea that we do share with others are unique anatomy that makes us different then what people expect to hear or see.

Should we as activists Turn out the Lights and stay silent or Turn the Lights On, as we have been doing so that others like us can find themselves sooner with less doubts about being different?

[Peter]

Hi Kailana,

I could never go back to that shameful place of hiding, where I spent so many years of my life living in fear and confusion because I did not know other intersex people, or how to talk about my own life and body. It has been an enormous struggle to come to terms with myself, but is has been worth it every step of the way. This self-understanding has often come in the face of narrow-mindedness and rejection. Everyone has to determine their own comfort level about what to reveal about themselves. Today, I can only be comfortable when the lights are on.

Peter

[Kailana]

I guess that is what I so wanted to hear.

I agree, the being ashamed of being different interferred drastically with my life when it shouldn't have at all.

So I am very happy to see you write what you just did Peter.

I along with you will never go back to feeling ashamed, freakish, or anything else and hope others gain that same confidence to speak up about themselves and for others when people make jokes or misspeak about what Intersex conditions are and how they affect us.

[Dianne]

I am still struggling to figure out how open I should be. Being totally open has its cost, particularly if you would like to be partnered and aren't, and in the effect it has on some friendships. The costs are all personal. Being secretive also has a cost - not being there to help others or in a position to speak out when something should be said. These costs are born by others.

Since the book "Between XX and XY" came out, more and more of my friends know and I am comfortable with that but I don't know how I would respond if asked to do a TV or newspaper interview - something where everybody would know.

I don't feel like a freak - just a bit odd LOL! - but I have also been dating and when I try to share my medical history with someone, I get dumped. It's hard to hang on to some pride when someone you like just can't get away fast enough.

I admire those who are totally out. Maybe I will be more brave when/if I get a formal medical diagnosis ......

[Kailana]

you know I hate to say this but it is likely that because you aren't as open beforehand you are meeting people ie dating the people you shouldn't be.

See with me at least and my last short though valuable relationship, she knew nearly everything about me before we hooked up. Because I was open and upfront she understood me allready and the real issue with dating wasnt her not accepting me, but her being afraid of what her own family members would think.

Now I am just suggesting that perhaps you do need to try openness first, then look for those people that accept you and then draw from that crowd potential partners where you allready know that they count you as a good friend and someone they freely love hanging around allready.

Unfortunately many people do get caught up in the stigma of dating someone that others would judge as well not a real woman. Sorry all for saying that.
I am assuming your dating men, and sometimes men can be some of the most insecure people in the world. For some of them the whole idea of dating someone who is intersex throws in another aspect? homosexual and for many men, they run from any assumption they could be gay. Now this is a generalization but seriously men are fickle and yes some women as well. Any change to their so called assumption of their straightness is something they cannot handle at all.

My advice again, be more open. Let people know right off the bat, the ones that stick around and want to be with you, will be the people you are most likely going to have a respectable relationship with.

Do not repeat the same mistake and assume that if a person gets to know you as a woman, they will then accept additional information that their love will make them blind too. Real life seldom works in your favor this way. A surprise after meeting people can ruin any chance of a serious relationship so get rid of the possibility of a a surprise ruining your chances be upfront and let people know right away, they will respect you better, many will understand, some will be curious and want to know more and the ones that are the most accepting and understanding will become your trusted friends.

ie you will know they value you as a friend by their behavior. When they don't and run away right off the bat then you won't be as devastated because their won't be as strong of a bond when they dissappoint you.

just some advice. Sharing right away opens many doors to acceptance.

[Dianne]

Thanks Kailana.

I figured out most of that about men a long time ago.

I suppose you are right - I am unattached at present so what's to loose?

[Aseras]

I didn't come right out in my relationship. First I would never have gotten into one in the first place. I got asked out. My reasoning was that I wasn't doing anything else, so I might as well try one time. Plus the girl was different too, she had cancer when she was two and lost about half her face to radiation and surgery. I had known her before and done some small favors for her, but never thought about a relationship. I figured she would understand what it was like to be different when the time came. When we hit things off I finally broke down and told her everything and it nearly did cost the relationship. She was on a quest to be as normal as possible and I just didn't fit into that plan. We are still working on things. She really wants me to marry her, but I'm not ready, and not convinced she really knows how tough things are going to be for me, especially with my repressed gender issues. We are just going slow and keeping our comminication open as best we can. I tell her everything.

I certainly could have "hid it" and I did consider it. Aside from my breasts I look like a guy mostly. Only if you know what to look for do you see anything different. I can understand the temptation for many. I just felt that I had to let her know, especially considering the things I was going through and my medical issues. I sometimes regret it, but I'm glad I don't have the burden anymore.

[Peter]

Hi Dianne,

It has been over 25 years since I was last in a relationship, so I have no advice to provide you on finding a partner. Over the years, I have come to appreciate certain advantages to being asexual. Good luck on finding a really great partner.

Peter

[Laura Robison]

I have had a few relationships before I met my husband, but because of problems with the healing of my SRS from the previous surgery I had, I couldn't be sexually active. That, and the idea that I should be honest about myself to potential partners, made it necessary for me to tell about myself early on in the relationships, and none of them lasted after that. After more surgery I finally had a functioning vagina, so that eliminated that part of the necessity of telling about my past. I finally decided that there was no reason to tell anyone about myself for any other reason than the possibility of marriage.

My husband and I just started out as friends, and over the period of 5 years our relationship grew. After 5 years, the possibility of marriage became a real one, and I told him all about myself. That was one of the hardest things I had ever done because I was so afraid of losing him. The only thing he doesn't know is what my name used to be. I believe the strength of our relationship built up over the 5 years, and the fact that he knew my personality inside and out and could not doubt that I am a genuine woman, was what made him decide that he still loved me and wanted to keep me. We are still happily married and just had our 20th wedding anniversary.