Bewildered and whimpering.

Spending the entire day and evening all by myself leads to excess introspection (I’m grounded by the misbehaviour of my uterus. H is going to a work Christmas ‘do’ and won’t be back until midnight).

[OK, brief unpleasant interlude in which I realised I was leaking through my enormous sanitary towel and pyjamas onto the chair. Chair cushion had to be thoroughly sponged. Knickers and PJs rinsed in cold water and awaiting laundry. I am not happy about this. Really, I am not. Seriously, uterus, WTF?]

Where was I? Oh, yes. Introspecting.

See, I don’t know where I fit, anymore. (Apart from in the menstrual overachiever’s club). I used to be this PCOS girl with one ovary and anovulation. Given that Clomid not only stopped working but stopped my ovary from working, I thought I had a one-way ticket to IVF via the slow-route of weight-loss. I was told, I was told by medical professionals, that IVF was really my only hope. So, you know, anovulatory. Needs IVF. Has fat arse.

[Also, the cocodamol keeps wearing off an hour before I can take another dose. I am either off my face on opiates or in immense discomfort. Therefore I am not functioning brilliantly. This morning I carefully put a hot mug of tea in the fridge and took the milk carton back to bed with me. I only worked out this was a big hairy FAIL when I went to take a sip.]

And now, it appears, that I am not anovulatory. Erratically perhaps, but I do ovulate. My fallopian tube works beautifully, as all (yes, well, all is a big word for the count so far, I know) my pregnancies have landed, briefly, in the Cute Ute as per regulations. I can get pregnant, doing that old-fashioned sex thing they told us about in Biology lessons. I do get pregnant.

Do I still count as PCOS girl with anovulation? Is the PCOS irrelevant now that the only signs of it seem to be the size of my thighs, my upper-lip fuzz and Satsuma’s general inability to get it together before day 18 (though that may be within ‘normal’. Who knows? Who can be arsed to tell me?). Am I actually a habitual aborter now? (Charming phrase, eh? Bless the medical establishment and its boundless tact). Or is this a statistical glitch and I’m going right back to being a PCOS girl in a minute?

More pressingly, where does IVF fit in in all this? It it something I should still be doing? Can I rely on Satsuma to keep this rate of production up, and therefore will IVF be unnecessary? Will the NHS even do IVF on someone who can get pregnant on her own? Will they do it on someone who might keep on miscarrying?

I don’t know what the rules are any more. Or what I should be doing now, what my best chance of a healthy viable pregnancy would be, would involve. I know, I am supposed to ask Miss Consultant about that when I next see her, and she will have my blood-test results, and a medical professional will tell me what I should be doing next. Yeah, that really worked with her bright ideas about Clomid and (startling lack of) monitoring and communication last Spring. I harrumph in her general direction.

And you, Gentle Readers. Where do I fit with you-all? Stirrup Queens (hi, Mel!) has me filed in her super-wonderful list of blogs as PCOS, which is exactly right as that is what I exactly have. How do you file bad luck, anyway? Because, as Senior Doctor said, there rarely is an actual cause for miscarriages. My only actual diagnosis is PCOS, and chances are that is what it will remain.

It’s just, having miscarriages feels so different from PCOS and anovulation. I daren’t say it is worse. God knows how I’d feel if I’d never got pregnant at all in these four years of trying. But it feels worse right now.

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14 responses to “Bewildered and whimpering.

  • Melissia

    May,
    I think that Senior Doctor is wrong and that just because medical science does not yet know the cause of something does not mean that there is not one. Medicine is an ever changing and advancing field (thank goodness) so I disagreed with that statement when he made it and still do. We may not yet know why so may miscarriages occur, but I believe that for many women who miscarry again and again there is a definable reason, whether it be genetics, chromosomal, hormonal or environmental. So looking is so very important and it does start with a diagnosis and you can certainly have more than one, many people do.
    As for the cocodamol wearing off you could try taking an extra 500 mg of acetaminophen about an 2 hours before your next dose as long as you don’t exceed the recommended daily limit for acetaminophen a day. That can make a huge difference and we used to do that for our post surgical patients quite a bit when it was not time for the next dose yet, that little bit of acetaminophen just helps the codeine in the cocodamol last longer.
    Hope that helps and that you are feeling much better soon.

  • May

    Hi May, from another May with PCOS. I know I’ve only rarely commented here before. Longtime lurker, though, originally here via Wifey/Ann.

    Have you considered that your PCOS may be the cause of your miscarriages? That being another charming side effect, along with the unwanted hair and extra thigh material. Insert the usual remark about me not being a medical professional, but I, too, proved to be a PCOS-er who ovulates while taking Glucophage/Metformin (7 times!!!) and gets pregnant (4 times!!!) and then has very early miscarriages (2 times!!!). If you do the math, you can see that 2 of my 4 pregnancies did proceed and resulted in real live children (not without drama, but that’s another story), but the second child was a result of very early progesterone supplementation after a spontaneous conception. I am convinced that he would have been miscarriage #3 had I not called my RE at 9 days post ovulation with the faintest of lines on a very expensive peestick and demanded a beta and a progesterone test. Both were horrifyingly low, so progesterone was started later the same day. Is there any way to get one of your NHS people to do something similar?

    Please accept my best wishes and hopes that your luck takes a major turn for the better sometime VERY soon. You’ve truly had a horrifying time. I hope my anecdotal evidence is in some way helpful to you.

  • a

    Here’s the thing about miscarriage…they happen outside of clinical settings for the most part. Therefore, the theory that they are all due to chromosomal abnormalities is just that – a theory. If you break it down, pregnancy is a biochemical formula with innumerable parts. It is not sperm + egg –> baby. If you’ve taken a chemistry course, you would easily see that the arrow would be surrounded by such catalysts as hormones, immune system, lining conditions, and a whole host of other variables that we don’t even know about. Writing miscarriage off to bad luck is simply a refusal to acknowledge that they just don’t know.

    As a fellow habitual aborter, who has no PCOS, and used to be able to get pregnant easily enough, I join you in your lack of classification. It’s difficult to feel out of place. Maybe we should make our own misfits corner!

  • Jenny F. Scientist

    (Long-time lurker and occasional commenter by way of Mel.. hi.)

    This may not be cheering, but there are actually a lot of studies demonstrating that women with PCOS are much, much more likely to miscarry. I’m a little surprised none of your fancy consultants have bothered to mention it, though perhaps… they couldn’t be bothered.

    You can look at this paper on PubMed if your heart so desires: J Obstet Gynaecol Res. 2008 Oct;34(5):832-7. Does continuous use of metformin throughout pregnancy improve pregnancy outcomes in women with polycystic ovarian syndrome? [Short answer: YES.]

  • Mel

    I don’t have good medical advice, but wanted to chime in from the blogroll perspective. Which is that I want you on there, whichever category.

  • g

    I’m not sure if I’m meant to be carrying the can for the medical brigade here, but I’ll pipe up 🙂

    Your drug names are a bit different and I’m not asking google today, so bear with me. I’m presuming you’re taking a fixed-dose panadol-codeine or similar preparation. You can take more panadol, as suggested above, but you do need to make sure you don’t exceed the safe daily limit- 4g a day.

    Generally, most people who are sore enough prefer to take the panadol+codeine rather than plain panadol as this can limit the amout of panadol+codeine you can have.

    I’m assuming you’ve taken a NSAID such as naproxen, or plain old aspirin if you don’t have that to hand, if you haven’t you should, they work better on prostaglandin related pain which is the sort of pain that menstrual pain is. Also, for the heavy bleeding, have you tried tranexemic acid (anti-fibrinolytic, stops clot breakdown and the bleedy thing is a bit less).

    Option C is a low dose opioid on it’s own that you can safely add panadol to without risking toxicity and all that messy stuff with liver damage.

    As for the m/c. Technically it’s three (I know, whoopee, right?), but most of us would look for a cause after two. ‘Unexplained’ m/c probably are a varied bunch but the genetic theory has some scientific underpinning in testing of early embryos. We’re pretty innefficcient at making diploid babies with all the genes in the right spot as a species- there’s been studies looking at hCG in couples trying to get pregnant and using VERY sensitive assays that show that in many cycles conception happens on some level and it just never gets anywhere.

    It’s not rocket science that two m/c increases your risk for a third one a little bit, but your odds (in the absence of an untreated treatable factor such as antiphospholipid syndrome) are that you’re still more likely to have a healthy pregnancy.

    As for the pco- you’ve been diagnosed with that and it doesn’t just vanish, although weight reduction, excercise and other things can help. Women with PCO can ovulate, there’s a spectrum from complete anovulation to long cycle and it may change over time in the one woman, especially with weight change.

    As for what to do next, I think I’ve armchair opined before that given we know that you can ovulate, you do have a working tube and uterus and you don’t have a severe sperm abnormality that the IVF-only thing is a NHS viewpoint. The main goal should be to get you ovulating (such as injectibles or other meds) and having a chance, even if it’s while you do the slow wait to IVF.

    Otherwise you’re kind of marking time.

    As for the clomid thing- response to clomid does vary from cycle to cycle.

    Anyway, I’ll end my essay now.

    g

  • Valery

    I’m so sorry that you have to be on your own the whole day, battling with pain and sponges. Hope the fridge kept your tea warm for you…
    hugs

  • Katie

    Ahem. Naproxen is not an NSAID. I’ve just been given it for my shoulder – and it’s not. We even looked it up in the BNF.

    That aside, I’ve been told by my anaesthetist friend that they really recommend codeine separately to the paracetamol as you aren’t really limited in the amount of codeine you can take (at least, unless you take it daily, if it’s a monthly thing you’ll only reach the limit by becoming more off-your-face, I wouldn’t have thought you’d get addicted).

    Anyway, IVF. Our conclusion was “an expensive and heartwrenching way to have another miscarriage”. We could have got it (initially probably on the NHS if we’d got our skates on, as 6mo no-conception past 35 was easily reached, and definitely by paying for it. I am not 100% sure of your inter-pregnancy interval while you’ve been really giving it some welly, if it’s been more than a year then you are usually eligible.

    Our other conclusion was on cycles per year, again a couple of years ago and while we were giving it our all, we would be no better off with IVF (and the waits between cycles for practical, financial, and hormonal reasons) than with trying on our own. We averaged about 1 pregnancy per year and given IVF success rates and, even private, wait times, we weren’t going to get better than that. But I don’t have your stats in my head, so you might feel your chances with IVF (and your younger eggs) are better than that.

    But, but, the rate of miscarriage and ectopic IS (as far as I know) higher with IVF. This is even true with PGS (which although everyone says “ooh, it must work because I want it to”, last I checked, appears to make things worse). They don’t have the knowledge currently to pick the “good” embryos and my instinct (totally not backed by medical information) is that implantation may be poorer quality as well.

    Either that or the women who can’t get pregnant also can’t stay pregnant – but we know that anyway – I think IVF has been compared to IVF-eligible women on waiting lists, getting pregnant spontaneously, anyway.

  • Rachel

    I wish I had some delightfully cheery good news to add, or at least a good bottle of wine to offer. I was told repeatedly that my PCOs (which granted is severe enough to make me 100% anovulatory) would also increase my risk of miscarriage significantly. That said, I’d fight for every test out there to make sure that there is no easily preventable cause.

  • meganlisbeth

    i have no advice.
    just love and hugs.
    xoxo
    hugs to you, miss may.

  • AMH

    I agree with all of the above about PCOS. PCOSers have a much higher rate of miscarriage, possibly higher than 50/50 with each conception. PCOS is not defined by being annovulatory, it’s defined by a grouping of symptoms that are all characterized by hormonal imbalance, on a spectrum. I am a PCOSer who usually ovulates, and often has “normal” length cycles.

    The only way to address PCOS is to try to resolve the hormonal imbalance. That usually involves:

    – Weight loss. PCOSers have higher levels of testosterone than normal (see the lovely excess hair, oily skin, spots, etc.). There’s a debate as to whether overweight PCOSers have more testosterone because they have excess estrogen stored in their fat, or whether they are insulin resistant and insulin so resembles testosterone chemically that your body’s hormone-clearing sponges (SHBGs) bind with the insulin and leave the testosterone free-roaming. It’s pretty well-documented that most overweight people and almost all obese people are “insulin resistant,” requiring the production of a huge amount of insulin to convey glucose into their cells properly. That tends to suggest the second theory of PCOS – too much free-roaming testosterone because of too much insulin.

    – Direct control of insulin production. Building on the theory above, this is why PCOS treatment in the U.S. generally involves metformin/glucophage. This reduces the amount of insulin produced and sensitizes your cells so less insulin is needed. As an added bonus, it usually causes weight loss.

    – Direct manipulation of the hormones. This would be artificially managing or creating the stages of a normal cycle through external hormones/drugs. Clomid is but one of the options here. After suffering several losses myself, the first pregnancy cycle that actually “took” for me was one where I started with oral clomid, added injectable menopur for a couple of days to further mature the eggs, took a “trigger” injection of hcg to force my ovaries to release the eggs, and then supplemented estrogen in the second half of my cycle to build and preserve my lining. Progesterone may also be appropriate for some. Basically, your body is unable to manage a full, normal hormonal cycle. It may get parts right, but the only way to ensure success is to force the issue at every stage. IVF is appropriate, but a cycle with injectable drugs (all injectable, or “hybrid” inject and clomid like mine) should be considered.

    – Manage blood clotting. While this may not seem to be your issue because of profuse menstrual bleeding, many theorize that the problem with the high rate of miscarriage with PCOSers is that excess testosterone and/or insulin causes you to be more likely to clot right at the time the embryo would be implanting. This prevents proper attachment and development of the embryo. Reducing insulin production usually helps with this, but many docs recommend a low-dose baby aspirin from ovulation to past the usual time for implantation (usually end of cycle, but for someone with bleeding issues, maybe 10-11DPO).

    Ovulating regularly is an accomplishment for a PCOSer, but it’s not a sign that all is right with your cycle. The “bad luck”/”chromosomal abnormality” story applies to normal people who have miscarriages, but it seems appalling to me that no one would mention that PCOS is associated with a very high miscarriage rate. I still think the answer comes down to treating the hormonal problems of PCOS, and that a carefully managed cycle with injectables would be the next step.

  • Hairy Farmer Family

    Jesus. That’s all… pretty heavy stuff.
    I really do think that the Consultant will roll in whatever direction you want her to, with possibly a slight leaning towards IVF, given your single tube. At least with IVF you know exactly when you’re going to be disappointed or elated: your emotional barometer has an actual calendar to feed off. It was not knowing if anything was happening that used to drive me potty.

    But if that’s not feeling like the right course of action for you both just now, then you evidently have a fairly realistic hope of another spontaneous pregnancy. Obviously, Satsuma will fail to Do Her Stuff the moment you decline IVF. I advise saying loudly in her hearing that you want it, then quietly cancelling by letter if you decide against the injectables route. Watched pot, etc.

    Our mattress has been the recipient of highly industrious scrubbing after some aggravating and unexpected leakage – annoying, particularly as I have the plastic-backed cover things to go under the sheet. The sheets themselves fall regular victim, alas. John’s bleary expression and shambling stance when he, once again, has to get up in the small hours while I strip the bed and rootle out a clean sheet from somewhere (ha!) would be funny, were I not in such a tearing mood about it all. And this to happen to a chair! Aiiee!

  • g

    Dr Spouse. Hate to be whiny, but pharmacologically naproxen is an nsaid 🙂

    Really.

    Love,

    g

  • Sam

    hmmm – just wanted to ask whether you’ve tried using a mooncup? I’ve had one for a few months now and just love it – apparently it really does deal with the dreaded leaking. (my own periods have never been mega heavy so cannot really comment on that)

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