feliciakw | It's been a year (medical update) (Reply)

It's been a year since I started seeing the endocrinologist. I've wished more than once that I would have known everything I've learned, back when I was presenting these symptoms (as far back as high school). Alas, a lot of this stuff just wasn't known or understood. :-/

For those of you just joining this saga, I have PCOS. If you have questions, feel free to ask. That's why I'm posting this. If my experience can help someone, I'll share.

I've been on spironolactone, an androgen blocker, for almost a year. You all know that men have some estrogen, and women have some androgens/testosterone, right? Well, I have elevated androgen levels, which is a primary contributor to acne. The medicine cleared up my cystic acne 100%, which means that my acne is indeed endocrine related. All that stuff they tell you about preventing acne when you're a teenager? Not related to the cause of my problem. Mine is caused by elevated androgen levels, which is connected to insulin levels in the blood. So the doc put me on an androgen blocker, which blocks the androgens from my system, and the acne cleared up beautifully. But as long as I was on the spironolactone, I absolutely positively could not get pregnant, because it would interfere with the development of the baby (i.e., it would turn a little boy baby into a little girl baby, which just doesn't sound right or natural or good).

So a year of tests and scans and drugs later, we're beyond the diagnostics of my problem to the treatment. We're at a place where I can with reasonable accuracy test and predict my cycle, and we can actively try for a bebe again.

I'm making this post to share some positive news, if not on the bebe front, at least on my personal health front. I've been off the spironolactone since before the trip to the OBX. I was, quite frankly, scared to pieces to go off the med, and I didn't eat carbs for several days (carbs being a foremost raiser of insulin levels, and when insulin levels go up, androgen levels follow). But by following the guidelines I learned in diabetic class last autumn (I'm not diabetic--and I don't ever want to become diabetic--but I am insulin resistant, what used to be called "pre-diabetic," which goes along with the PCOS), I've been able to keep my insulin levels reasonably stable, and I haven't had any major breakouts like I used to get. (And for those new to my situation, the breakouts were painful. They would wake me up in the middle of the night with pain, and I felt ugly and didn't want to leave the house. It was horrible.)

Another positive bit of news that I got yesterday is that my most recent blood test shows my SHBG is up. What's that, you ask? It's sexual hormone binding globulin. In women, it's the stuff that takes the excess androgen out of your system. (I assume that men have something similar to take excess estrogen out of their systems.) When I first had my levels tested a year ago, they came back as almost non-existent. I was at the lowermost range of where it was still measurable. Now my levels are up, which means my androgen levels are down. Which is for yay!

Other heartening news is that Dr. E. says that what we're doing now (drugs, well-timed "encounters" aka "the rhythm method," olive oil ;-) ) is an acceptable course to take for the foreseeable future. The percentages are not in our favor (they never are, which makes me wonder at all the unplanned/unwanted pregnancies), and IUI doesn't increase the percentages significantly. Anything more drastic, such as in vitro, is out of the question financially, but I'm comfortable now with what we've been doing, and I'm delighted that continuing in this fashion is doable.

So anyway, just some encouraging, positive things I kinda wanted to share.

As you were.