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April 09, 2012


Dammit! That sucks. I'm sorry you got bad news.

What did you think of the IUD while you had it?

Well, I liked it sometimes and not others.

It was awesome not to have to worry about pregnancy or hormones. And until the bleeding started (which I may not be able to blame on the IUD!) I didn't really have many problems with it.

BUT! That little string? Does NOT "soften" with time. It is plastic fishing line and it stays there with its poky little end and it WILL jab a dick once in a while. That turned out to be more of a problem than I anticipated.

But it may also have had more to do with my particular anatomy blah blah.

So: I don't know if I'll get another one put in now that it's out. We'll see what the insurance company says. ("Fat chance, dumbass." -Aetna)

Well, that stinks. I'm sorry.

I feel the same way about my cyst-ridden ovaries. It sounds like you're doing everything right already with regards to protecting your overall health. I'm curious to see if the RE encourages you to continue the met in the hopes of avoiding diabetes. That's why I take it, though I wonder if that's still thought to be The Best Plan.

Maybe I'm missing the back story, and not to throw a wet blanket on your pity party, but your health is very good compared with many people I know. Your BMI is outstanding, heart-lung-cardio is outstanding, and everything seems to be in good working order. Polycystic ovaries doesn't translate into "Jo's health sucks and she's in danger of Future Terrible Health Problems because of it."

I'm just a wee bit confused why, after relatively easily conceiving two healthy children, then getting yourself healthy (and off metformin,right?) and buff, why you are panicking now. There is and has been no real true cure for PCOS, but it's not exactly life threatening.

So what am I missing?

Not understanding the verklemptedness.

No need to be disingenuously "confused" when it's obviously a matter of what-the-hell-is-her-problem-itis. Not sure if you intended a snide tone with "pity party" but I'm going to take it as such.

I'm completely stunned that you would say I "relatively easily" conceived two children. If you think that, then yes, you're missing the back story. I am the veteran of lots of injectible fertility drugs and all that leads up to that point, a couple of early pregnancy losses including an ectopic pregnancy, and ultimately five years of good old TTC before we finally scored a keeper.

You know, the good things in life don't mean the bad things just get whiffed off. Yeah, I got some prizes. Doesn't mean I'm any less entitled to be bummed about a setback.

And why is this a setback? The whole point is that the no-more-metformin is a lie. There are plenty of thin women with PCOS who have insulin abnormalities that lead to cystic ovaries even without weight gain. And those little cysts? They mean that I'm NOT fertile. Nope, not trying to conceive, BUT fertility is the ultimate downstream measure of health in PCOS. It tells you that everything is working right.

I have good blood sugar control, but then I always did, in my labs. The fact that my ovaries were able to become cystic tells me that there are hormonal imbalances that were not detected by a basic metabolic panel. The fact that they're cystic now means it'll be that much harder to get on top of those hormonal imbalances.

I would guess my testosterone is high right now. Which is most emphatically not a good thing for a lady. Estrogen and progesterone out of whack. No, these things won't kill me, but they will make for compounded risk a little down the line, PLUS they'll make life in the present a lot more unpleasant. Extra body hair, mood swings bad enough to require meds, acne (it's starting up again, actually), and probably some weight gain issues as well, honestly, as time goes forward. It's already started happening, actually.

In short: something huge and life-affecting that I thought was under control is NOT, and there's no easy way to know how to proceed. It sucks and I get to be sad about it.

You've done a lot of good hard work, and it's frustrating to feel like it was all for nothing. But it's not, not, not. Do you know what would be going on if you hadn't been doing all this? I've seen it, and it's not pretty. (And I'm not just talking hair and pimples.)

Try to think of your body as perfectly fit to be running around the forest or laboring in the fields at a near-constant point of starvation and STILL being able to reproduce. It's not your body's fault that you're in a much safer situation.

I know - believe me I know! - that it's hard to accept that medication might always be in your future for you to be at your healthiest. But there is good medication, as I know you know. I love metformin. I mostly love OCPs too, in that they give your body a chance to approximate the state that women's bodies were meant to be in (and I'm speaking medically, not socially): either pregnant or lactating, ovulating maybe only a couple dozen times their whole lives rather than grinding one out hundreds and hundreds of times - hence the lowered chance of ovarian cancer. (I notice you're also working on the "barefoot" part of that cliche as well :-) )

I know a fair number of skinny PCOS women who lived throught the pre-metformin and ART time. None of them were able to have more than one child in their whole lives.

Hey did I tell you some historical medical sleuthing I did? I figured out that the Ingalls women from Little House? All PCOS, every last one of them. Ma did get pregnant five times in 30 years, but she was starving for most of the time.

DoctorMama, that was actually a *helpful* way to guide me toward reframing the situation. Thank you for that.

I am softening toward BCPs, but I still feel like I need a specialist prescribing -- I don't want to take the chance of half-assed suppression that leaves me with lots of follicles.

And that is absolutely FASCINATING about the Little House/PCOS thing!

I like thinking of it as a now-maladaptive adaptation. I suppose it makes sense, as I come (as do we all!) from a long line of women who managed to reproduce during times of stress and starvation.

Sorry. Phooey. It sounds like it might be the metformin being lowered.

I know about the body going awry thing. It stinks. But I could never say I was being amazing and good. It's always a bit my fault--which is way hard to stomach. So it kind of sucks either way. I guess if it is your fault you feel very guilty but if it is not then you feel powerless.

I hope it gets figured out soon. Really sorry.

Thanks, y'all.

The blessing is that not so much is at stake -- I'm not trying to get pregnant, I'm just...tantruming, a bit, I guess? But this thing, it pushes all my old buttons, you know, the ones I've had installed over the past decade?

I have a referral for an RE, and the radiologist said possible adenomyosis. Which is not a huge deal in and of itself, and blah blah ovaries, and FEH. It looks like somebody will be giving me hormones -- but not after a serious workup.

I'm so tired can't I just go to sleep for the next two weeks.

Thanks for doing all the footwork to show me something, Jo. I started Metformin a year ago, after having gone a year without a period. I got a period EXACTLY 2 WEEKS after starting the metformin, and have been around 35 days ever since -- seemingly my most fertile ever.
But now I know . . . it's not reversible, and it won't wear off.
And, like you -- even though there are no babies in my future -- I'm still Not Pleased to realize this.

Jo and Doctor Mama... how does one go about being diagnosed with PCOS? I mean, I have SOME of the signs, but not all of them. I have a (freaking) 24 day cycle that even Demulen 35 - which seems to be the high dose BC - doesn't fix. I have the serious waist circumference issue, have only gotten hairier as I get older (but assumed it was because I was getting older), really oily skin, skin tags that are also getting worse, and get ovarian cysts all the time even on BC. I've stopped with the BC for now, because a) it's not stopping the 24 day cycles which is why I started it again, and b) my husband had the big snip.

I did have a doctor tell me that I had "saved" my fertility by being on BC pills for 13 straight years, but I didn't ask at the time what she meant - I assumed it was because of the cyst issues I was having. Because, on the "not PCOS" side, I got pregnant VERY easily both times.

So, is there a test that conclusively would tell me one way or another?

I'll jump in on that one, and it's just my perspective as a molecular biologist/MD who has "PCOS secondary to androgen excess."

While PCOS can result in infertility, and it's (sadly) treated too often as 'just' a fertility issue, infertility is not the defining feature. PCOS is a phenotype and PCOS is a syndrome, a collection of clinical presentations, and you don't have to have all of them to have what would be some state of excess androgen (or poor receptor control. It's primarily a metabolic disorder with potentially troublesome sequelae if it's not managed conscientiously. Some women with PCOS can get pregnant, but the odds are often lower. Some women are insulin-resistant, some are not (I'm not, but took Metformin for years for protective purposes, so that I didn't become so). Some women have cystic ovaries, some do not (I do, even on the pill, Metformin, and various other androgen blockers and insulin sensitizers). Some women have elevated androgens, some do not but STILL manifest the clinical signs of androgen excess (hair growth, acne, hair loss, elevated lipids, triglycerides, hypertension, diabetes, etc) due to increased androgen receptor activity in response to normal levels of androgens.

PCOS is a diagnosis of exclusion and requires much more than one definitive test, in part to exclude other sources of androgen excess (including adult onset or non-classic adrenal hyperplasia, pituitary disruption, etc). Improved fertility could be an outcome of proper treatment, but in my view it shouldn't - at all - be the only one. One could still get pregnant and have a baby but still have serious metabolic derangement. Does that make sense?

This is just my recommendation, but I'd see an endocrinologist. The pill can be utilized well, but many doctors tend to throw it at the problem in hopes it will help and without assessing and aggressively managing/preventing other longer-term impacts to overall health.

Okay, this is way late to the discussion, but isn't it (also) likely that the Ingalls women had some sort of X-linked issue? Didn't Ma lose a few sons? And Laura lost one as well.

wow, Maura! awesome explanation.

Brooke - hard to know, but probably not; I think Ma lost one, but he was healthy until 9 months or so - not typical for most X-linked conditions - and Laura's was soon after birth - pretty standard for the time & place.

Jo - love you!

The Ingalls women thing is FASCINATING. So if the infertility part of PCOS gets worse the more cycles it goes on, does that mean women with PCOS who have their first pregnancy very young, like Caroline and Laura Ingalls did, are more likely to have have subsequent conceptions? As their ovaries have had less time to get cystic?

Jo, were your early losses related to the PCOS? Or was it unfortunate happenstance? Not that we ever really know why miscarriages occur, blah blah blah (maybe it's the DES-caused malformations? maybe it's the homozygous MTHFR mutation? maybe it's the antiphospholipid antibody syndrome, oh wait, you don't have that anymore. yeah, we have no idea, either).

So the sort of general recommendation for PCOS is to get it checked out and then be on metformin...forever? To keep other aspects of the syndrome in check? Does metformin have side effects?

Note that I don't have PCOS, I'm just a medical hobbyist with a fake specialty in infertility issues.

Thanks, DocMama! :)

Mary, re: your question about Metformin to manage PCOS - sometimes. Other times it's not enough. The usual go-to is the pill, and typically Met if you're TTC. Note I'm not saying that's the correct way to go for everyone, because it might or might not be; it's just what's often done. Some women gain relief from lifestyle changes. Some take finasteride, spironolactone, which are both androgen blockers; some (like me) take Crestor and Lovaza because PCOS can seriously screw with your lipids/triglycerides. Some take Met, of course, and/or the pill. And some do/take all those together, yo. None of the above - except Metformin and lifestyle changes - go really well with TTC, however (understatement of the year). And then there's ovarian wedge resection surgery and even removal (controversial). My point is that if you're not pursuing pregnancy, there are more options, maybe.

I confess to not being up-to-the-minute in the state of research in the field (am otherwise tasked these days with really weird shit), but I'd be curious if anyone's looked at if the level of intervention required is directly related to the point in time at which one's diagnosed vs. the point in time it actually developed. I shall do some sleuthing.

Also, Jo: last checkup with my endo, she noted the latest guidance from the good research is that no benefit was realized in women who have PCOS without insulin-resistance. Neither here nor there in your particular situation, and I LOVE MET, but I just thought it was interesting.

Fascinating, though. Appointment tomorrow. I shall advise.

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