PCOS all along?

[HappyAmbler]

Looong time lurker and occasional poster. On app so not going to attempt a link... but I started the 'Infertility meltdown' thread back in Jan.

Long story short, ttc for over two years, helpful diagnosis from NHS fertility clinic of 'unexplained infertility'. My CCG won't let me be referred for ivf until trying for three years. So decided to go private.

Ultrasound scan showed very obvious PCO - I could see for myself on the screen. No idea why the NHS didn't pick this up in my scan A YEAR AGO

I didn't know much about PCOS, having been told I didn't have it! I thought the main symptom was anovulation/ irregular periods. But apparently not the case for everyone - including me. My symptoms seem quite mild (apart from not being able to get up the duff!) - I wouldn't say I had acne, but I've definitely been more spotty since I came off the pill. My BMI is under 25, but I wouldn't mind losing a bit of weight. I also have to pluck the occasional hair from my chin

Diagnosis yet to be confirmed by blood test at the start of my next cycle. But I've already gone low GI and cold turkey on caffeine and alcohol - willing to do ANYTHING at this point

Sooo... two weeks ago I thought ivf was imminent/inevitable, now we're facing a few more months of 'trying' before reassessing our option I guess. I'm happy to have gone from unexplained to a treatable condition, but I'm pissed off with the NHS for missing it.

Plan to have a further chat with my consultant the next time I see him - I was slightly in shock the last time!! Have been doing turbo research into PCOS, and the consensus seems to be that the main reason for infertility is a lack of ovulation, but this isn't the case for me. I can see how the resulting hormone imbalance could be a problem I suppose??

Anyone else with ovulatory PCOS? Did you have trouble conceiving? What helped you get upduffed in the end?

Thanks for reading

[Jellylove]

Hi, sorry your having difficulty conceiving, I suppose it's good to finally have a diagnosis.
I have pcos but had irregular cycles and tried several drugs before finally conceiving, clomid, which did nothing, then femara which worked a treat. Also took metformin for the whole time TTC.

Can I ask how you know your ovulating?
I hope the docs can come up with some solutions for you :)

[HappyAmbler]

Hi Jellylove, thanks for your reply. So please femara worked for you [gr

Re ovulation - I have been tracking my cycles for two years, and I reliably see a temp rise every month. I also get fertile cm and ov pain. I used a CBFM for a few months (until I got fed up of peeing on sticks!) and I always got a peak reading, indicating LH surge. I'm pretty in tune with my body after all this time, so I can pretty much tell.

Interestingly (well, for me!) I had the scan on cd16. I told the consultant that I thought I had ov'd earlier in the day, and he was able to confirm this. Apparently, my cervix wax open (tmi, sorry!) indicating ov was imminent or had just happened, and he actually showed me the corpus luteum where the egg had popped out!

Felt vindicated after the NHS had showed a total lack of interest in my observations "research shows women can't reliably pinpoint ovulation" - ha!

[HappyAmbler]

Also meant to say, clomid did nothing for me either! Glad I have other options!

[BalancingStick]

HappyAmbler - it is worth looking at the difference between PCO (ie you have the follicles on the ovaries) and PCOS (the syndrome comes with a whole host of other symptoms). I'm a bit behind you on the infertility journey - got my referral to the consultant a few months ago and about to try my first round of clomid next cycle - but I have diagnosed PCO. There is a bit of a question mark over the syndrome... as the only other symptoms I have are irregular periods (normal weight, normal skin, not hairy, etc etc). Basically the follicles on the ovaries don't automatically mean you have PCOS.

[AnnieHoo]

I had an ultrasound scan last week at Day 17 in preparation for IVF next month. The consultant said to the nurse "polycystic both sides".

I have never been diagnosed with polycystic ovaries and as the consultant didn't seen worried about it I didn't ask anything but now it's playing on my mind. I've stopped taking Clomid so maybe that's had an effect.

From what I have read having multiple cysts on your ovaries is not a big problem and, as others have said, different to the syndrome.

It's all so confusing !

[naty1]

Its possible you just have cysts.
You will have to wait for the blood tests. Higher testosterone, high Lh compared to FSH.
If you are ovulating it could well be something else causing the infertility.
Have you had sperm count done?
How long is your leuteal phase?

[HappyAmbler]

Hi all, thanks for your replies. I realise PCO don't automatically mean PCOS. But when I saw the cysts on the screen it did all seem to fall into place a bit for me. I've always feel that I had a bit of a 'hormone imbalance' - worse spots at 32 than I had when I was a teenager! random hairs etc. But of course I won't know for sure until I have the blood test.

I don't think there's any harm in the dietary changes I've made in any case.

[HappyAmbler]

naty1 we've had all the standard tests on the NHS including sperm analysis. My luteal phase was 11 days, now 12 since I started taking vit b6. I did wonder if my LP being "on the short side of normal" might be a factor. My day 21 progesterone tests were 'borderline' at 29 and 31.

[AttilaTheMeerkat]

Hi HappyAmbler,


Blood tests and ultrasounds are the best indicators of whether ovulation has occurred or otherwise. Other home methods can be at worst totally wrong. You may well be ovulating occasionally, spontaneous ovulation is possible even with PCO but it is likely not to be happening regularly. The cystic follicles do disappear only to be replaced by other cystic follicles. These cystic follicles are problematic in their own right; some of these are dormant, others release hormones

There is a very fine line indeed between PCO and its associated syndrome (which is basically the cystic ovaries with one or other associated symptom). the problem with PCOS as well is that it is a very individualistic disorder which affects each woman with it very differently.
I was diagnosed with PCOS based on the cystic ovaries, bloodwork and one or two hairs.

You have every right to be hacked off with the unit who missed this; unfortunately it is fair to say that in the NHS some units are far better than others. You were given a non diagnosis of unexplained simply because they had not bothered to investigate either of you thoroughly enough.

Do you have current LH/FSH blood test levels?. That will also provide clues.

You will need to be very persistent with them in order to get answers because as you have already seen it is all too easy to be fobbed off.

[Bue]

Happy I am in the same boat. PCO but no evidence of the syndrome in my blood results, no classic symptoms except some very unfortunate hair loss on my head , I ovulate every month around day 20 and have a period like clockwork. It seems to me that my PCO manifests in that I don't ovulate well - I have a short luteal phase of 8 days and low to borderline progesterone - 26.5 last time it was checked. I am about to start Clomid this month - interesting that it didn't work for you.

If you've already tried that, do you know what the plan is for you? Femara? In the meantime, have you tried acupuncture? I've been doing it for 5 months and although I'm not pregnant, it has resolved some hormonal issues for me - I was getting terrible fibrocystic breast pain linked to my cycle, which resolved completely within two cycles of starting.

[AttilaTheMeerkat]

Hi Bue,

re your comment:-
"PCO but no evidence of the syndrome in my blood results, no classic symptoms except some very unfortunate hair loss on my head sad, I ovulate every month around day 20 and have a period like clockwork"

What blood tests were done and on which days?. A day 2 test should always be done to compare your LH level against that of FSH; there can be an imbalance there. Also blood tests should be done more than once; these should be done each month and over a period of say three months minimum. At the clinic I attended they looked for a result of over 30 with regards to progesterone to confirm ovulation.

It is also quite possible to have periods without ovulating; has anyone commented further on the hair loss (that can also be symptomatic of PCOS as well for some women). The problem is that this is a very individualistic disorder and it affects each woman with it very differently; the commonality is the cystic follicles on the ovaries.

Good luck with the clomid; do ensure however that you are monitored whilst on it (you should ideally have both blood tests and ultrasounds) otherwise you will really have no way of knowing whether its working or not. It should be used with a degree of caution in some women as it can affect LH levels markedly.

[Bue]

Hi Attila my latest day 2 bloods were LH 3 and FSH 5. I've been tested for everything under the sun, TSH, blood glucose, testosterone, prolactin and some steroids I can't remember the name of. I've had progesterone done twice and both times it was just under 30 - I understand doctors differ on whether this indicates O, but I get a clear temp shift every month and a very clear OPK about a day before the temp shift too, so I think I do ovulate. I know some people say you can get a thermal shift without ovulating, but I haven't seen any evidence to convince me of this. Thanks for the good wishes, I am being fully monitored with ultrasounds and blood tests while on Clomid You're probably right that I should ask to have bloods retaken again at some point. I go back in December if no pregnancy by then, so that will be a good time to ask for repeat testing.

[Bue]

Actually, I had forgotten about the possibility of luteinized unruptured follicle syndrome, which could be a possibility, I suppose. We shall see on this monitored cycle!

[HappyAmbler]

Ack, hate replying in the app - I can't see/remember what everyone has said!

Bue, it sounds like we're in a fairly similar situation. Like you, I'm fairly convinced I ovulate.

Re day 21 progesterone, as I understand it, anything above 3-4 indicates ovulation, but drs look for over 30 because this is deemed to be the threshold for sustaining pregnancy ie. supports sufficient growth of the endometrium. As I said above, both times I've had my progesterone checked, ovulation was indicated. And ovulation was confirmed in my last cycle by my consultant actually showing me the corpus luteum on the ultrasound screen. I don't think I just happened to ovulate on the months it was checked - I'm pretty sure I've been ovulating all along.

BUT, like Bue, I don't think I ovulate 'well'. Although I didn't get upduffed, the clomid worked in the sense that it increased my day 21 progesterone, and extended my luteal phase (which does make me wonder if something else is wrong...)

Blood test tomorrow for glucose tolerance and hormone levels related to PCOS. Hopefully the results will give me some answers...

[Bue]

Happy if the Clomid doesn't result in upduffage after three or four cycles, I plan to press for further investigations. I do wonder if I may have endometriosis as well, although the consultant seemed to dismiss my symptoms and not think investigation was warranted at present. Has your thyroid been checked recently? Because mine is completely normal but higher than the recommended value of 2 for conception, it has been suggested that they may start me on a very low dose of levothyroxine to bring it down to that level. For some women that simple step seems to result in pregnancy. I think it's worth scrutinizing every single result.

[inconceivableme]

Yes, I discovered that I have PCO when I was 33, and after TTC unsuccessfully for over a year. I don't have the full syndrome, just the cysts on the ovaries apparently and no other symptoms as such, other than slightly irregular cycles, which I only noticed after stoppingthe Pill to begin TTC. I think being on the Pill had masked the irregularity.

My day 21 progesterone tests were always ovulatory and all the other hormone tests were normal too. So, in that sense, and because OH had a normal semen test, our clinic classed us as unexplained. After my PCOS diagnosis I had a lap & dye and hysteroscopy to remove a polyp and rule out endometriosis etc. All was clear and fine and I had 4 months of Clomid to 'boost' me (though I was already ovulating alone) while we waited to start IVF. But we still needed IVF to conceive and were lucky to conceive on the first try. Our IVF cycle was textbook -good number of eggs produced, all fertilised, all got to day 3 and then we had 1 top grade blast put back on day 5, and another top grade blast and two less good blasts frozen. I still find it weird and mystifying that we were unable to conceive naturally.

Check out an organisation called Verity. They are all about PCOS and have a great and supportive chat board of their own.

Good luck!

[inconceivableme]

Oh and just to say, I only had blood tests, not scans while on Clomid.
I also did acupuncture weekly (at great expense - grrrr!!) for about 6 months while undergoing investigations. I started the sessions just before my lap & dye / hysteroscopy op and continued them while on Clomid and stopped just before the IVF cycle started. I didn't have anu acupuncture during the IVF cycle, but I had a great lining throughout it, which I can't help but attribute to the previous acupuncture. I could be wrong though.
Re: endometrosis, I was 'lucky' in that my NHS consultant said I needed a hysteroscopy to remove polyps seen on the scan, and decided that as I'd be under GA anyway, they'd do a lap & dye at the same time. My consultant said that the lap & dye is the 'gold standard' infertility investigation and is the only way to completely rule out endometriosis. While waiting for the op was torture and delayed us starting the IVF (and I felt my clock ticking and was struggling mentally with the infertility), at least that way, we started the IVF knowing there was nothing undiscovered inside that could pose a problem for implantation etc.

[MrsChocolateCupcake]

Hello,
Not read all the posts so not sure if its been mentioned before - I have PCOS with all the symptoms, not actively ttc from 2010 but not actually preventing with partner now H 2013 I found Inositol (Holland and Barrett) I have since had two pregnancies unfortunately both ended in secondtri miscarriage. But I went from no pregnancy in the 3 years to pregnancy in the 1st month of taking high dose Inositol.
Just thought it might be worth a mention :)
Fingers crossed for you.