Unanswered Questions

[Guest adanie46]

I had my first appointment with an endocrinologist a couple months ago. My school was able to hire one so all of us uninsured students could have access. I was intending to get the order for my blood work to start HRT and begin the physical aspect of transition. Unfortunately she looked at me a while and spouted all of her worries about PCOS and the dangers and told me to get some info on my medical history. I've never been to doctors or had any appointments outside of young childhood so I called my mom to figure out how to get that info. When I explained my symptoms (body hair, menstrual irregularities, low blood sugar, low blood pressure etc) she said she didn't think it was PCOS.

She said when I was born I had horrible body odor and when she asked about it the doctors told her I had been exposed to high levels of androgens in utero and that had affected me. Apparently she had no idea what it meant but was informed that there would be other effects. I spoke with the doctor about this and she thinks its reasonable to get some tests done to see if I'm intersex. I did some research based on what my mom told me and the endo agrees its likely that I have non-classical CAH.

Unfortunately I do not have the money for the blood tests nor any other tests she'd like to see to rule out other conditions. I also don't have insurance. I can find a lot of information on the web. Its even better that I do a lot of social justice work and I'm a student in biological sciences. So I understand what I'm reading. The problem is mainly that al lot of what is written out there is not by people with intersex conditions. Its by doctors or therapists trying to "fix it". I understand that I may not know the truth for another 10-20 years, but I'm not sure what that would mean. Besides the answers to multiple questions throughout my life what comes with a diagnosis?

Is anyone here undiagnosed but without any other diagnoses to "explain your symptoms"? In other words is anyone on her sure they are intersex but not confirmed with a doctor? Why?

Thanks,

Angie

[VickySGV]

Just a suggestion here, but there are programs at major universities studying human development who could do the actual testing for you as part of a research population. I believe UCLA out here in California is doing something along that line. There are probably places there on the East coast doing the same. Your clinic at your college could draw a genetic sample for you, and then send it off to the research team who can check to see what your genetic pattern is. They will do the work, and will give you the results on the condition that you be in their data base as a statistic or case study.

[Guest Paradox]

I am not intersex, but I am diagnosed with issues involving the Adrenal gland. Recently they have locked me on the estrogen side of the fence after several years of bouncing between testosterone based and estrogen based blood chemistry, so I do have empathy for you.

One good thing that I can tell you is that with a little research, you will quickly be up to speed with the doctors and will be able to feel more confidence in talking with them. You are lucky to be finding help early in life.

Since you are somewhat close to Maryland, may I suggest that a starting place for your needs might be: http://www.nih.gov/ .

I qualify since they have been trying for over 10 years to get 2000 people studied for one of my conditions. They have not even come close to the number needed for my condition, and that is true of many studies they offer. You may well qualify for help also. Endocrine conditions are always something that seems to interest them.

That said, I have not taken them up on their programs. They put you in their hospital and pay for everything, but you still have to pay for travel. Also, once in their program, you have to go back every few years for their followup. So it is not without costs to your body and soul.

My best, most heartfelt wishes for you. Endocrine issues are difficult for doctors and for us, but we live. We exist; given enough time and understanding, we can thrive.

Debra