Making up the medical balance, or: please help me find a surgeon

A number of months ago I set out to once and for all get the matter of my intersex condition diagnosed and treated. Or die trying, if you want to be dramatic.

Results have been mixed, with some of the (expected) negativity from physicians, but also some unexpected positive events. I'm frankly completely sick of my gynaecologist's attitude towards my case, treating me more like a confused if not crazed patient instead of a human being in need of real medical help. This also in light of the unexpectedly positive outcome at the radiologist, who not only went the extra mile by having a second MRI scan ordered to confirm some nagging doubts, but to also have this scan performed at such a detail level that it would be usable for a surgeon to plan a surgery with.

Summarizing the results: the gynaecologist ensured me that the blood tests showed only normal values for all hormones and markers. The radiologist confirmed the presence of a vagina and indicated both that a tumour might be at the root of my symptoms and that I should talk with a surgeon about reconstructive options for this closed-off vagina, as well as to get some solid answers about my internal anatomy this way.

The current symptoms I'm dealing with are still pretty much the same as when I started this attempt for answers. The original lower abdominal monthly pains and cramps have subsided significantly with the formation of this linea nigra line on my lower abdomen. I also may have to start buying new bras soon if my breasts keep growing at their current rate. Pain in the vaginal area is still there, albeit less severe. Beyond these clear symptoms I also suffer from regular nausea, hot flashes, exhaustion and had to put myself on a strict diet to counteract the weight gain I was/am experiencing.

In short, my body still insists I'm pregnant and it's debatable whether this ~1,000kcal/day diet I'm on isn't merely masking the weight gain I was experiencing. I do feel better now that I have lost about 4 kg over the past weeks, though, aside from the exhaustion. My lack of energy might also be due to stress and the severe lack of proper sleep I have been getting over the past months, however. As far as diagnostics go, I'm pretty much still at the level where I was about eight years ago.

At this point neither my gynaecologist nor family doctor appear to be in any kind of rush in order to help me. With each passing day I find it harder to believe that I'll ever get an appointment with such a reconstructive surgeon, let alone receive proper treatment for my intersex condition. To me it all kind of feels like a reconfirmation of what I knew a decade ago already, yet without the hope that everything will be fine now.

Please prove me wrong.


Maya