What I have is PCOS.
That's what they call it, anyway.
What's happened is, I've never had anything approaching a regular, 28-day period in my life. As a teenager, this didn't bother me at all. I'd get a period maybe four times a year, and I was happy about that. I think then I saw menstruating, disdainfully, as a girly thing, something that would bring me down (I thought the same thing about having kids, then, too).
At doctor visits they inevitably asked me when my last period was. And when the date was two or three months before, they'd give me the raised eyebrows and ask if I was pregnant. When I said no they'd pause, lean in closer and ask, "Are you sure? What birth control are you using?" Seventeen-year-old, self-righteous, nerdy me would answer, "Uh, abstinence?" Sometimes it took several rounds of this to get out of there without having to take a pregnancy test.
Every health care professional I encountered between puberty and age 25-ish seemed quite concerned that I might be hiding a pregnancy.
But no one ever, ever seemed concerned about naming or fixing the problem of my infrequent menstruation. I'd occasionally hear, "Oh, we'll worry about that when you want to get pregnant."
When, in my mid-twenties, my periods became even less frequent and I started to worry about my fertility, it took visits with three ob/gyns and a great deal of insistence on my part to get anyone to even attempt a diagnosis.
PCOS is a syndrome, not a disease. Which means we don't know what causes it, and in fact it's likely that as the syndrome becomes better understood, docs will break it down into a couple, or several, different diseases, each with different causes.
For now, they toss everyone who has certain symptoms into the PCOS bin. I don't have some of the more common symptoms, like extreme acne and hairiness, high body mass, insulin resistance, or thyroid problems. What I do have is infrequent ovulation and a nice set of cysts of different sizes on my ovaries.
The PCOS diagnosis is firmed up by the fact that I seem to respond somewhat well to the drug metformin, which seems to help a lot of folks with PCOS ovulate.
Yep, that's right. It made me ovulate. I think. Not once, not twice, but three times. The story is:
Last September, after five months off the pill with no ovulation and no period, I did a cycle of Clomid. No egg.
November: Clomid cycle two. No egg.
January: convinced my ob/gyn I should give the metformin a try despite my lack of the "classic" PCOS symptoms. Started the metformin.
End of February: ovulated after having given up on ovulating.
Mid-April: ovulated again, had tons of well-timed sex, spent thirteen days in a state of complete obsession over the fact I might be pregnant, then got my period.
Late May: ovulated again, on cycle day 30, same as last cycle, but my husband was away the entire fertile window.
Mid-June: met our RE for the first time, and, all cocky and convinced I was on a regular 44-day cycle, elected to put off treatment and see if one last "natural" cycle would work.
And did I ovulate on cycle day 30 as hoped and expected? Of course not. Did I ovulate at all? Of course not. Day 40 - almost three weeks ago now - I threw in the towel and demanded Provera. Took the pills for seven days as directed and waited for the promised period. And waited. And peed on home pregnancy tests (well, one). And huddled in the corner of the conference room at work to have furtive phone conversations with the nurses at the RE's office about the precise color of the spots of blood that every now and then eek their way out of me, and the stunning increase in breast size that the fertility gods have granted me in the past week.
I am still, in fact, waiting for my period to start, now eleven days after finishing the Provera. And I would really, really, please, like it to come so I can go ahead and take the Clomid (which is supposed to be extra-super-powerful when taken in combination with metformin) and commence the regular ultrasound viewings of my ovaries, and get with my husband at the right time, and become all round and glowy and pregnant and pop out a lovely baby, et cetera.
But for now I am waiting to bleed.
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Did the health professionals discuss diet as a way to deal with PCOS syndrome? There are a couple of new books on this topic. Some people (like with diabetes) are able to control the imbalance by making dietary changes. I find that doctors sometimes leap to writing the prescription without mentioning the other approaches that might be helpful.
ReplyDeleteYeah, that diet question is a funny thing. Some folks swear that fewer carbs and more protein will correct the insulin resistance that's part of the syndrome. I know lots of people have had some success with this, both for weight loss (which can be a huge, hard issue for many people with PCOS) and for ovulation.
ReplyDeleteI don't have the macro-level insulin resistance that many PCOS women have. That's to say, I went in for the glucose tolerance test, drank the oversweetened Orange Crush, and my glucose and insulin levels all came back normal in every sense.
However, the fact my ovaries seemed to kick in upon taking metformin likely means there is some hidden insulin resistance ... like maybe just certain kinds of tissue, or just my ovaries, are processing insulin in a slightly weird way and therefore (through some process I'd love to have explained to me well) not doing their job.
Last summer, before taking any clomid or anything, I read the book, The Insulin Resistance Diet, which has you be vigilant about balancing carbohydrates with proteins. I was pretty dedicated about following that for a few months. And still didn't ovulate.
So I went back to eating the occasional bag of orange Milanos.
The bottom line is, I'm not willing to do anything more extreme, diet-wise, than I did last summer. I still limit my consumption of simple carbs (which is healthy for *everyone* to do), and in the grand scheme of things I have a pretty darn sensible diet.
But, damn it, I have a need for chocolate from time to time, and I'm not going to blame myself for sabatoging my ovaries every time I give in to that craving.
Thanks for asking, by the way. Was that way more than you wanted to know, or what?
The story of your teenage years are so familiar to me....I can't count the number of times I had to tell the doctor that no, it was impossible that I might be pregnant, and still he would send me off for a pregnancy test. When I went off to college and was concerned that I hadn't had a period for 6 months, the doctor told me not to worry and put me on bc...it wasn't until I was 28 that finally I doctor listened to my concerns about saving my fertility, diagnosed me with PCOS and started me on Met...
ReplyDeleteAnyway, that is more than you probably wanted to hear..just wanted you to know you are not alone..I am rooting for you!:)
The story of both of your teenage years remind me of mine too and my Dr diagnosed me with PCOS and started me on metformin and i have had my period every 28 days ever since i started taking it and now me and my husband are exspecting our first child due in April i didnt think this medication would work but it proved me wrong just thought i would give u some hope
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