Doctor keeps refusing tests

[Aviva]

I am a patient of the gender clinic in Holland since 2008 (when I was 15). Initially I was diagnosed as having "extreme GID". During the medical tests there where however some frowns. I had a micro-penis (which I never saw as a medical abnormality up until then), my testes were way too small, my build is more feminine and I had gynecomastia. These things were never mentioned to me during the tests, but made their way into my medical record.

My whole process went as for any other GID diagnosed person and I had no reason to doubt the intentions of the hospital up until then. I always felt different with my body not being as it should, but it was something that I felt was part of my GID.

Everything changed when I went to the surgeon in early 2011 to discuss my operative options. He told me that he couldn't work with the tissue I had and that I needed the colovaginoplasty. The surgeon was surprised when he found out that I wasn't aware of the notes regarding the differences of my body in my medical record. He strongly advised me meet with my endocrinologist again so he could test me for a possible DSD.

My endocrinologist wasn't having it and was minimizing everything I said. He told me I was making stuff up, that all boys can have feminine features and that the micro-penis was a variation on a normal scale of development as well. He was just waving it away (literally). For the record, this doctor is officially a gynecologist.

Without any answers or tests in sight, I turned to my medical record. I found everything confirmed right in there, but they just didn't listen to me when I kept asking for tests. I just left it alone while feeling extremely unsatisfied and uncomfortable.

One of the things that bothers me is the new view on gender issues in the DSM V. It extremely extended what can be seen as a GID and also DSD's can apparently be counted as such. I think the hospital uses that to brush me off because it isn't a directly visible issue anymore.

Now, five years after looking for answers, it is haunting me. I know something isn't right and I want answers badly. In the meanwhile I have done some research myself and I always come back to Partial AIS.

A few weeks ago I went to my family doctor and explained my situation. I asked him if a local endocrinologist could test me, but he wasn't willing to help either. In Holland we only have one specialized gender clinic and the family doctor doesn't want to refer me anywhere else then there. It makes me feel completely stuck in the middle.

I have no idea what I should do or if just need to leave it. I feel trapped and completely lost about my identity. Any suggestions on what I could do are welcome.

[Dena]

Welcome to Susan's Place. I am neither a doctor or an expert on intersex so all I can do is take guess. It sounds like you are intersex however there are over 30 possible causes. Some are simple genetic test, some are expensive genetic test, you may need an internal examination and it could be hormones. The simple place to start would be to look at your pre HRT lab test and see what your testosterone/estrogen/estradiol levels were. If your testosterone levels were normal male, AIS is likely. If they were low but estrogen/estradiol levels are higher, it would indicate other conditions.

Most of the time Intersex makes little difference in the treatment but the surgeon might like to know what is going on because there could be internal feminization that they don't normally see. This could be detected with something like an ultra sound examination.

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[HughE]

It does sound like you have an intersex condition of some kind. One possibility is that you've got an XXY karyotype, since it's the commonest genetic condition that leads to incomplete masculinization, and one of the hallmarks of it is that you have small, hard testicles. It's unlikely to be PAIS for the simple reason that PAIS is very rare, something like 1 in 50,000 births (whereas 1 in 500 male births is XXY). Another possibility is that you were prenatally exposed to synthetic hormones. There's plenty of us in the over 40s age group who were exposed to an artificial estrogen called DES, that was used for preventing miscarriages. Micropenis is one of the things that quite often happened with DES (as well as things like a feminine build, gynecomastica and of course, gender dysphoria). You're too young to have been exposed to that drug, however I think it's highly likely that other synthetic hormones still in use can have similar effects (in particular, members of the progestin class of hormones).

[AnonyMs]

I'd start looking for another doctor. There's got to be at least one in the country who will help.