Cryptomenorrhea

[neko]

I have a question for those who have no vagina but get your period.

I was born with fairly normal-looking 'boy' parts, so basically I was left to figure out the monthly thing on my own when it started in my early twenties. Basically I get the usual PMS symptoms followed by cramps and lots of 'crud' coming out in my urine. There is never any fresh blood, it just looks like very dark pee. Something like the color of beer or apple juice, except more opaque/cloudy. Anyway the first time this happened I didn't realize what it was, so I kinda freaked out and went to a doctor who did a blood test (check for hepatitis) then told me I was fine, and tried to convince me it was irritable bowel syndrome. Yeah, well, pretty soon my "irrritable bowel syndrome" started repeating every 3-4 weeks. Anyway I found another doctor. He has several TS patients but doesn't seem to know what to do with this. He ordered an ultrasound but they couldn't find my uterus. I've been on antiandrogens (for hirsutism) and it makes me feel better (less moody) but it makes my cramps worse. I tried taking birth control pills and it makes the cramps lighter but I hate how it makes me tired and makes my breasts constantly sore.

Anyway what I am really wondering is how bad is it if I keep getting my period and bleeding internally. And how do I find a doctor who can deal with intersex issues? There seem to be several who work with GID but really don't know what to do with intersex cases.

[Sofie]

Hi Neko
and welcome

I don't know how bad it is to bleed internally but knowing that the blood somehow "diappears" inside me is kind of weird. I don't think it's healthy.
I too had cramps and 'crud' coming out in my urine. The cramps stopped when I was about 27yo. At that time I got ill, started having chronic pain in my joints and muscles, lost most of my hair in only 3-4 days and started growing some facial hair. Still, I'm not sure if there is any connection.

If you tell us where you live, other board-members may be able to help you find a physician.

Sof i e

[neko]

Well the blood doesn't really disappear, it breaks down and makes its way out after a while, turns my urine dark, sometimes turns my feces yellow too.

I am 29 now, and it doesn't show any signs of stopping. I am not sure it would be good if it did - when I was a teenager and not having my period, I had hot flashes, insomnia, and my testosterone level went sky high. I was pretty miserable. I also got rapidly sick (headache, joint pain, dehydration) if I ate anything containing calcium or vitamin D - milk, cheese, even bread with calcium in the baking soda. I haven't had that problem in a long time, in fact now I crave cheese when it's my week.

I don't know what would cause you to lose your hair in 3-4 days, doesn't sound like a typical hormone problem.

I live in Pennsylvania so if you know of any doctors in the USA I'd be grateful. I am tired of wasting my time with clueless physicians who don't help.