FTM with PCOS seeks advice on TX options

[misterandyindiana]

Hi, I'm new to this site. I've been seeking out individuals with similar medical problems but haven't found any in the "real world". Hoping someone on here can give me some advice.

I'm a genderqueer/trans-masculine/female-bodied 30 year old student in the United States. I have never undergone HRT and am pre-surgery of any form. I am unsure of whether or not I will ever take testosterone as I am a professional singer and am worried about some of the side effects (hair loss, clitoral growth, etc).

For the last year I have been suffering from extreme fatigue, frequent viral infections, and sleep disturbances. My physicians have found that my thyroid has innumerable cysts, that appear to be benign after multiple ultrasounds and biopsy. All of my blood tests, for thyroid and otherwise, have come back within normal range. Some of my more intermittent symptoms (back pain, very heavy and irregular periods, and night sweats) seemed hormonal in nature so I went to a reproductive endocrinologist who performed some tests and diagnosed me with Poly-Cystic Ovary Syndrome and Endometriosis. These issues are typically treated with estrogen or birth control supplements, which I am nervous about taking as I don't want my body to become more feminine. PCOS results from high androgen levels in female-bodied individuals, so I have heard it is very common in FTMs but can't seem to find anyone who shares my experience.

My doctor knows about my gender identity and is aware of my aversion to female hormones but I simply don't want to feel this bad anymore. My periods are often debilitating and I simply don't have the time to deal with that nonsense! He has prescribed me Aygestin, which I am willing to try for now. Worst case scenario, I don't like the way it makes me feel and I can stop taking it. We have also discussed hysterectomy, but I know many cisgender women who have undergone medically necessary hysterectomy and do not recommend the procedure at such a young age. My doctor says I can take a small amount of estrogen after the surgery and not go through menopause prematurely. My friends advise me that this is not true, and it sounds worse than just dealing with my current symptoms. I went to an LGBT health center and didn't seem to get many answers there either. Just feeling very frustrated and confused.

Please forward this info along to anyone you may know who has had similar experiences. I would greatly appreciate it.

- Andy

[roady]

Hi Andy,

Hope you're doing well in the TX heat. I wanted to make one suggestion about working with your PCOS. I have a friend who was diagnosed a few years ago, and due to her aversion to taking meds, decided to work on it on her own. She changed her diet to be more whole foods focused, eating more veggies and the like.  I don't know about your eating habits, but hers were not great at the time, so I think this helped her to feel a bit better.  She also started exercising (just walking regularly). The symptoms haven't been interrupting her daily life as much, anymore, so far as I know.

As for my own experience, I was having symptoms of PCOS (extremely painful menstrual cycles, often I couldn't go to work because they made me sick). I was tested however (ultrasound), and they didn't find evidence of cysts. I found that as far as dealing with the pain, naproxen sodium tablets worked best for me (brand name is usually Aleve or something like it). Obviously, though, these did not alleviate all symptoms, and yours sound more severe than mine.

I ultimately decided to go forward with HRT, and after my first month taking T I never had a menstrual cycle again. So that was one side benefit of T for me, but I totally sympathize with your uncertainty regarding it. I worried over the decision for about 4 years, and it was a very difficult one in the end.

I hope you feel better and that you find a solution that works for you.

Best,

Kesed

[Robert Scott]

I have pcos -- it sucks.  My doctor put me on Depo proveria - a non estrogen birth control.  It made my periods a lot less but still happening.  I started t and have been on it for a year and half.  Still having cycles just a lot less.  A week ago I had a full hysto - I would do it over in a heart beat!  First time in years that I haven't experienced pain in that region and my back.  I didn't even need the pain medication.  That was my personal experience

[Jeremy]

Hello, I realize this is an older post, and hopefully you have found a solution by now,but thought I would share from my expirience of my husbands dealings with PCOS before and after T. 
He was diagnosed with PCOS a couple years ago, when we were having trouble conceiving. I don't know a lot of the details of his doctors visits/tests etc, but I do remember the irregular and painful cycles he complained of pretty much since we originally met. After the first shot of T, I don't think he has had a menstrual cycle since, and is one of the bennifits he tells me about all the time. I know each person is different, but I though I would share.