[LondonWish]

I haven't met anyone else with the issue I have, but I have too much testosterone. For all of puberty and my teenage years and into my 20's and 30's, I have had male pattern facial hair, horrible irregular periods and weight gain. I was on birth control pills for most of my 20's (except for when I was trying to get pregnant) and actually lost weight while on the pill since my hormones were normal and regular dieting worked. Once I went off the pill, I would gain 20 lbs, then get pregnant. I couldn't stay on the pill indefinitely and my blood pressure was high every time I would get above 190 lbs., then I ended up having a hysterectomy last year, but my dr. insisted I keep my ovaries or it would make my problems worse. My periods are gone, but I still have the facial hair and weight issues. There's nothing I can take to reduce the testosterone, I was told I would need to lose weight for the level to go down, but the high level is what is keeping the weight on me and making it so hard to lose. I was told this by a dr. I would have to do something "drastic" to lose the weight. I went on Medifast and lost 35 lbs in two months, but after that, I couldn't afford to stay on it and then got pg w/ my third baby. I have been off and on MF for the last few years, and cannot stay on it long enough to lose all I need to lose (costwise and just can't stomach it after a while) and I need to be able to eat normal for the rest of my life without yo yo-ing forever. It was one thing when I was much younger and had never had kids, but now I am in my late 30's, had three c-sections and a hysterectomy. My body is not at all the same!

Anyone else dealing with this? It's been so frustrating and I am SO tired of it taking over my life.

[beerab]

So were you ever formally diagnosed? It sounds like you have PCOS (polycist ovarian syndrome).

Yes I've been dealing with it my whole life. The only thing that has worked for me is the South Beach diet, with PCOS it seems that lowering your carbs is the only thing that works to alleviate symptoms. That and exercise.

Also medication may help, such as spironolactone for the excess hair and metformin if you have high blood sugars. Ask for a referral to an endocrinologist, they can give you more information and the proper medication if you would like to go on them.

Basically my understanding is our testosterone is too high, then it causes our ovaries to enlarge, then through some connection this causes us to have issues with insulin resistance in our cells. The insulin resistance makes it much easier to gain weight but harder to lose weight. Hence why a low carb/right carb diet really makes a difference in our weight

I have a link to my PCOS blog below- try looking up some of my first posts.

We have a section for people with PCOS here as well- good luck!

Oops my blog link is gone: www.pcosgirl.com

[spixiet]

You might want to check out the PCOS boards on this site... a lot of women with PCOS deal with excess testosterone (hence excess hair and acne), in addition to insulin resistance which creates many obstacles with weight loss.

Also, have you discussed spironolactone with your doctor. It's an anti-androgen (which can help with excess hair) and it helps with high blood pressure. I originally took spironolactone with a standard birth control pill to help with symptoms and to regulate my period, but my doctor switched me to Yasmin when it came on the market because it's a birth control pill which already contains an anti-androgen.

Good luck

Beerab beat me to the punch by three minutes

[LondonWish]

I looked up the PCOS symptoms b/c I thought it sounded like I had it too, and maybe I do, but when I was going thru all of the testing before my hyst, my dr. said my ovaries look really good, one of them had a small cyst, but it was my uterus that was the real problem. I saw an endocrinologist when I was 19 and was told at that time, and then again by a hematologist that it was too much testerone. My blood sugar has always been normal.

I will check out the PCOS board b/c it does sound like a lot of the same stuff and I am wondering if I could have this, but never got the right diagnosis. I had so many problems and so much crap for so long, and it's not as easy as it would seem to go to a dr. and just get the diagnosis and treatment.

[Rana]

I have to chime in an say that I think it's also PCOS.

The problem is that doctors don't always know everything! And especially general practitioners and gynecologists don't necessarily know it unless they've dealt with it.

If you can make it to a reproductive endocrinologist, you might be able to find a doctor that knows about PCOS.

Your blood sugar levels don't have to be off in order you to have PCOS. The other symptoms that you're listing seem to be clear indicators. I don't think there's anything wrong with your uterus, because your uterus doesn't manage testosterone levels.

This page explains really well the options there are for treatments: http://pcosfaq.com/

There's other websites, of course, and the PCOS board here too.

[beerab]

Haha sorry spix!

Not everyone with PCOS has cysts. I've gone through periods with my ovaries covered in them and other times with none (like now) but I still have PCOS.

I agree you need to see an endocrinologist- until I saw one I never found a doctor who was really knowledgeable except to say "oh you need to lose weight to help with that..."

I don't take metformin because my blood sugars are controlled very well with diet. I'm currently not on spironolactone either because it makes my blood pressure too low.

The best way I've found to control my PCOS is with the south beach diet and staying away from breads and pastas and other carby foods like that. If I do eat bread or pasta it's ALWAYS whole grains or multigrains. I get most of my carbs from veggies. I also eat very little fruit but I take a multivitamin each day to help with any missing nutrients.

Good luck.

[Ive Had Enough]

What was the diagnosis regarding your uterus and why you had to have a hysterectomy?

Why I ask is because when I sought out help for PCOS (I self-diagnosed myself because doctors....), I had my uterus biopsied as a first step. It came back questionable so I had to have a full, outpatient hospital biopsy of my entire uterus (happy to be asleep for that). It came back that I had complex endometrial hyperplasia with atypia present (basically a 40% chance of it turning into cancer if left untreated). If I was older and not worried about having kids (since I haven't, yet), they would've done a hysterectomy, hands down. But because I'm only 31 and DO want kids, I've been treated with Megestrol for the last 3 months to reverse the precancerous conditions in my uterus. Just had another in-office biopsy done yesterday to see if it's working and won't know for a couple weeks what the prognosis is.

Now, as was explained to me, not having a menstrual cycle for so long caused by PCOS led to the complex endometrial hyperplasia.

That's why I asked what your diagnosis was.