cacophony

I went to the mountains;
I looked to the children, I drank from the fountains.
There’s more than one answer to these questions,
Pointing me in a crooked line.
–The Indigo Girls, “Closer to Fine”

I went back to see my RE (reproductive endocrinologist — read “fertility doctor”) yesterday. It has been over four months since he confirmed what I’ve, really, known for a long, long time — that I have PCOS. I remember the very first time I read about this disorder, I thought “Holy shit. I have this.” But it took me over a year to make it to a doctor to ask about it, and another six months to find a doctor who would, instead of smiling and nodding, actually run some tests and do something to treat it.

PCOS is polycystic ovarian syndrome. It’s the most common endocrine disorder in women, and I’ve seen it estimated that as many as 10% of women have it. It’s a metabolic “disease,” of all things. Basically, it means my insulin is fucked up. Now really, no one should be surprised that I have fucked up insulin — the history of diabetes in my family is very, very strong. I have believed, in a fatalistic way, pretty much all my life that I was doomed to get diabetes and there was nothing I could do about it. What I didn’t expect was that I could start having problems with my insulin long before I had diabetes.

So my insulin doesn’t work very effectively, and my body reacts to that by releasing much more insulin than I need — biological overcompensation. (This tendency will eventually cause my insulin to work less and less well, which essentially means that yes, I’ll eventually become diabetic.) The combination of the poorly working insulin and the overproduced insulin does VERY strange things to my body. It’s a little surprising, in reality, to realize all the things that it has an effect on.

It causes my body to produce too much testosterone. Too much testosterone, in people with girly parts, isn’t a good thing. It leads to things like: hair on the face, extra weight around the midsection and a body shape more like a man than a woman, acne, and a slew of other things I’m forgetting right now. While I don’t (luckily) have all those symptoms — my level of testosterone is not terribly bad — I have a couple, the most notable being that I carry my extra weight in my midsection. It can cause high cholesterol.

It causes my ovaries to essentially go batshit insane. Basic biology lesson: when a woman is born, she already has all the eggs that she will need for a lifetime — she never produces anymore (unlike men, who are constantly “reloading” their supply of gametes). Ovulation is the process of releasing those eggs. In a “normal” woman’s cycle, several follicles (which contain egg cells) begin to grow in the ovary toward the beginning of the cycle. As the cycle progresses, ONE (and occasionally more) of those follicles continues to grow larger and mature, while the others essentially disintegrate. (I have no idea how the lucky follicle is chosen.) That follicle accumulates fluid and grows quite large, until a surge of a particular hormone (lutenizing hormone, to be exact) causes the follicle to reach maturation and burst (along with the wall of the ovary), thereby releasing the egg. As you’ve probably figured out by now, this is not how it works in women with PCOS. Our ovaries get “stuck.” Instead of having several follicles which start to grow, and one follicle which completely matures, we have a LOT of follicles which begin to grow — and none that mature. Our ovaries are left with multiple small follicles that are going nowhere. On ultrasound, these tiny follicles show up as “cysts” — leading to the “polycystic” label. So — most women with PCOS don’t ovulate, and because we don’t ovulate, the hormonal cascade that begins with ovulation and ends with menstruation doesn’t happen. This means we tend to have very, very irregular cycles (a lot of us can go months and months without eveer having a period). I am completley unclear on the mechanism by which the problem with INSULIN leads to the hormonal problems with testosterone, estrogen, and other hormones involved in this process — but it is well documented that it does.

So there’s no real test for PCOS. They can check hormone levels, and free insulin levels (though from what I understand that’s a difficult thing to test), and they can do an ultrasound to check for polycystic ovaries — and if they see those things (particularly the cysts) then they can say pretty confidently “Yes, you have this syndrome.” But the reverse is not true. If they don’t see all those things, they still can’t say for sure “No, you don’t have it.” Even the polycystic ovaried are not required to be present for a diagnosis of PCOS. There is a quiz, that can help you determine if you likely have PCOS or not, and when I took it I scored sky high. Even though I was pretty confident that I had this disease, I was stunned when they did an ultrasound and one of my ovaries showed up with “lots and LOTS” of tiny follicles — as the doctor said, “VERY polycystic.” (Only one, though. The other ovary was normal.) I can’t say why it shocked me so much, but I was fully expecting to have totally normal ovaries — and nearly cried when he told me about the cysts. I can’t explain that reaction, but it was there.

So what’s the treatment for PCOS? Unsurprisingly, it’s the same as the treatment for diabetes — diet, exercise, and a medication called metformin which help your insulin to work better. The best treatment for it is to lose weight — though, as the doctor said, it’s like the ultimate cruelty — you tell a group of people that weight loss will help immensely to treat their disease, but in the same breath tell them the mechanism of the disease will make it very, very difficult for them to lose weight. It does kind of make me laugh. But if the metformin does what it’s supposed to do, and helps my insulin “behave,” then it should be easier to lose weight because I won’t be trying to fight my body every step of the way. And then he threw a number out there that stunned me. (I’m not going to get into specifics about what that number is, or how it compares to the number I see on the scale now, because I’m just vain enough not to want to — and embarrassed about being that vain.) A number I haven’t seen since I was in high school and my mother was calling me her “anorexic child.” And that has really thrown me for a loop– because I can’t imagine it. And I just don’t know how it’s going to be possible for me to achieve a goal that I can’t, even in the vaguest way, visualize. And then I get scared that if I can’t make it that far, to that number, it’s not going to do any good anyway and I’ll never get “well.” So I’m trying very hard to put the number out of my head, and just focus on the next baby step in this journey back to being healthy.

When I went in yesterday, I’d lost 18 pounds since the first visit, according to his scale. And he’s thrilled, and I’m thrilled — but it hasn’t helped yet. I’m still not ovulating regularly — occasionally, but not regularly. He laid out all my options for me — and there are so many. I can keep doing what I’m doing, and just wait — he says I’m still very young (it’s funny; I feel so very old to still be in this baby chase) and we have time to see if continued weight loss works magic. I can increase my dose of Metformin. I can do some more testing to see if there are other factors involved. I can start on an ovulation inducing drug (though with PCOS patients, particularly those on Met, that leads to a significant risk of multiples). More than one answer to these questions . . . And he is comfortable with whichever I choose, because he doesn’t think I need to be in a hurry. When my son is asking me every day “Is there a baby in your belly yet? Am I going to have a baby brother or sister? When is my baby brother going to be here? When I have a baby brother or sister I’m going to . . . ” then it doesn’t seem like I have much time. Every day that ticks away is a bigger gap between my children, and I’m struggling to accept that. But. But. That’s not a good enough reason to rush into things, because no matter how wide the gap — they will still be siblings.

In the end, we decided to increase my Met doseage from 1000 to 1500 mg a day.

So now I just wait, and see, and watch those days tick by without a damn thing I can do to stop them.