Do I have PCOS?

[Pipbin]

So I'm 36. I'd know if I had it by now wouldn't I?
I can't blame spots and being over weight on anything other than too much cake really can I?

I've been on the pill for the last ten years and then a large number of years before that. I have no idea how regular my periods are.
A while ago I had suspected appendicitis so I would have thought it would have shown up then.

pipbin I worry about the same thing. I'm 25 and I too assume I can chalk the odd spot and weight on a bad diet and not enough fresh air. I also assume it would have cropped up by now, particularly as I've never had irregular periods. If it's something you're concerned about, why don't you go to the GP? I hear they can check with blood tests and they shouldn't ask you to wait as it's not just fertility related.

Hello,

Thought I'd mention my experiences. I was diagnosed with mild PCOS back in September. I had no idea because I din't have the classic signs that are always cited - not overweight, a bit spotty but nothing major, no excess hair & my cycle was regular at 28/29 days.

I went to the docs because we were TTC and all of a sudden my cycles became a bit irregular 28-34 days and my bleeding got lighter and shorter. They did an ultrasound and hey presto. Having said that my bloods are always normal. My GP talked to me about the link between PCOS and insulin resistance and while I don't have classic PCOS symptoms I recognised some signs of insulin resistance like frequent urination, mood swings, depression, tiredness etc..

While I have never been on the pill I understand that this can mask the symptoms of PCOS. It might be worth discussing this with your GP if you are worried.

Hi ladies, I too am 36 and worry about having PCOS. My periods have started to become a little irregular the last couple of months (from 28 to 32 days) and for a couple of years now they have lasted about 2 weeks from initial spotting to the blood flow stopping. I don't have any other symptoms but am prone to depression (which gets really quite bad before AF!!!)I have pushed with my GP for blood tests and because of my age, have stressed my concern about it possibly affecting my chances of conceiving. I have an appointment for an Ultrasound pelvis scan next week (I assume this will check for PCOS?) -my GP volunteered to refer me and the appointment came through within about 4 weeks! I think it is SO important to tell your GP what tests you want and why so you find out sooner rather than later if there is something that may get in the way.

xxxx

I'm.worried about this too. Always struggled with my weight. Had very irregular periods in my teens been on and off pill for years. Been ttc for 16 months. I'm 29. Had progesterone checked over 3 cycles, came back as 15, 20, 25. 30 confirms ovulation but Gp didn't seem too worried. Since then I've been charting and only on the 25 progesterone cycle did I get a confirmed peak. Since then two without clear ovulation. Jury is out this month but if I get to "17 dpo" with high temps only for it to say "hmm not sure you ovulated after all" I will cry, print off my charts and march back to the Gp.

BTW I doubt many women realise they have pcos until they struggle when ttc.

I agree - lots of people don't know until they TTC. I only found out because when I was a teenager my mum noticed a little patch of hair on my jawline and I got it checked out. I wasn't overweight and had no more spots than your average teenager. My periods were a bit irregular, but this would not have been a red flag for a teenager with hormones everywhere.

The key test for PCOS is the day 3 LH/FSH ratio. That is the test you need to push for, and a scan. The best one to view the ovaries is the lovely dildocam rather than a traditional ultrasound. Have a look at the Verity website for PCOS info.

"The key test for PCOS is the day 3 LH/FSH ratio."

Not sure this is entirely true - after all, your hormone levels may be normal at the beginning of your cycle, but that's not to say they'll develop normally right through to the end. This is why the day 14/21 test is also necessary, for (I think) progesterone and testosterone.

My day 3 tests came back as 'normal', and I'm actually slightly underweight if anything, but a scan showed cysts and I've had terrible acne since coming off the pill almost a year ago - also very erratic and long cycles. The specialist I saw today considered these symptoms enough to a) put me on Metformin, and b) request another blood test (fortunately, I was on day 24 today which he said was perfect, so I had it done then and there). Fingers crossed!

My real only reason for thinking I might have PCOS is the spots. I really shouldn't still have spots at 36. I am over weight, but TBH that could be eating too much! I have two rouge hairs under my chin but other than that no more hair than normal.

When I has suspected appendicitis I had a scan of my ovaries and the like and nothing was mentioned.

chateaumargot my understanding is (and this is based on having the condition for 18 years and having read up a fair bit about it) that the LH/FSH levels are key for diagnosing pcos. Testosterone is another important indicator (and I believe can be done on any cycle day - my latest one was done with my Day 3 test). Progesterone is kind of the consequence of messed up LH/FSH levels. If the LH level is not right and is not "ripening" the egg properly, you will not ovulate and the Day 21 test will show reduced progesterone as a result. (Have a look at the "How is PCOS diagnosed?" section on here: [http://www.pcoshelpcentre.com/what_is_pcos.html]).

As PCOS is a syndrome, people with the condition will all have slightly different collections of symptoms. I am a normal weight (BMI 21), few spots, but some hair and screwy hormone levels, plus cysts when scanned).

They are learning new things about the condition all the time. When I was first diagnosed in 1993 it was thought to be a purely gynae condition whereas many people now think it is more of a metabolic disorder (hence the link with insulin resistance, thyroid disorders, etc). Sorry, am rambling now! Learning about and managing the condition has been a bit of a project for me. Getting my blood sugar levels under control has made a world of difference to me!

"If the LH level is not right and is not "ripening" the egg properly, you will not ovulate and the Day 21 test will show reduced progesterone as a result."

Yes, of course - but all I was saying is that it's perfectly possible to have normal LH/FSH levels on day 3 and still have PCOS, because those levels may not continue to be normal later in the cycle. At least, this is was I was told today by a consultant endocrinologist..!

Having seen numerous gynaes and specialists over the years, the one thing I can say is that no two of them seem to agree on anything to do with PCOS! I have never heard of that before but maybe there is some new research on hormone levels available. In blood tests on and off for 18 years I have only ever been sent for LH/FSH tests on Day 3.

If you were on the pill or had recently come off it, how would PCOS be detected? Via ultrasound only? Just wondering because I have always suspected wonky hormones / PCOS and had them tested while taking a very short break from the pill but everything came back normal. I have no idea whether my periods would be regular or not and all three of my kids were conceived after coming off the pill without ever having a period.
I've always felt more "normal" on the pill than off and during the later stages of pregnancy which makes me think my baseline hormone levels are a bit funny.

Pop, I think you'd have to give it a couple of months off the pill to see if you developed long or irregular cycles. Then it would be through a combination of ultrasound and blood tests (and any other symptoms, eg acne) that you'd be given a diagnosis.

But as the endo I saw yesterday stressed, there is very rarely a clear diagnosis as such, because symptoms can vary so much - and by extension, they can often only realy treat according to what appears to be happening in your individual case, and then often through trial and error. Hence my endo starting me on Metformin, and saying we'll move on to Clomid if that has no effect (by which we'd also deduce that insulin resistance may not be my problem - though I suspect it is!). There's also ovarian drilling, whereby the cysts themselves are directly removed - but as he said yesterday, no one actually knows to what extent this actually 'works' in terms of its correclation with successful pregnancies, or if it does, why.

Basically, it's all a bit trial and error-y! And in my experience, GPs are often the last ones to ask: I had two doctors dismiss me because of my normal day 3 tests, only for a third to finally refer me to a specialist who said that it was very likely that I had PCOS (given irregular cycles, ultrasound results and acne) and that I really needed day 21 tests, too. My advice would be that if you sense something's not right, to push for as many tests as possible and if necessary a referral to an endo or gynae...

I agree with most of that, but bear in mind not all PCOSers have long or irregular cycles. I have always had a cycle every month. The length varies slightly (over recent months they have been betwen 25-30 days and there could have been a few chem pregs in there to stir things up).

Over on the Verity PCOS forum, there are a number of people in my situation (but also many who have no cycle at all or long cycles, etc). It's a syndrome so no two people have exactly the same collection of symptoms.

Thanks all. Good post Pipbin. I'm bookmarking this information.

Hey,

I have just been diagnosed with PCOS after years of talking to Doctors who weren't interested I finally found one that would take me seriously!

My partner and I have been trying for just over 8 months now but no luck yet. I have been referred to a gyno but still waiting for an appointment. I guess my biggest question is what happens next?!?

I don't have a lot of the 'normal' PCOS symptoms as I have regular periods, unfortunately they are too regular! Only have about 8-9 days between them!

Any help advice would be really appreciated!

Hi All, just been looking into PCOS after searchimg up various things that were wrong with me and i found this thread.
after reading what you have all written i suspect that i could also have it. Have got to book a doctors appointment tomorrow, just wandered if you could tell me how hard the doctors are to persuade to be tested for it?
Back when i first started having my af's i had very irregular and long cycles and after seeing the doctor she put me on the pill which i believe has masked the problem.
I came off the pill a while back and started ttc with no luck, my cycles are really long and very very light af's, just spotting really, im constantly tired, my hair is always falling out(luckily i have very thick hair) and i have a blood sugar problem, i call it funny spells but all this i have now found out can be a sign of pcos.
Any information that might help me would be very welcome. Thank you

That all sounds pretty familiar, particularly the blood sugar thing. I get hot, dizzy, irritable and feel like I am going to faint if I don't keep mine fairly stable.

As the first step is just blood tests it shouldn't be too difficult to persuade a GP to test. And then if your levels are out of whack, you need to push for a gynae appointment.

If you have been ttc for less than a year you might want to emphasise the other issues and not mention the ttc in order to get a referral (which is daft, frankly, but seems to be the way it works).

Thank you for filling me in eurochick, thats exactly what i get, hot dizzy and feel like im going to faint, when i went on my diet i didnt get it as much. I only found out about 2 years ago that my mum and sister get it too, so didnt think much about it but now wer ttc and my periods are all to pot i started looking online for more information and pcos just keeps cropping up. I have no idea if my mum had any problems ttc (i just assumed not as im one of 5). My sister is older than me but she hasnt ttc yet, so no idea if she has problems.
Will speak to the doctor and see if i can get anywhere with them. Thank you

For what it's worth, I don't think you have to have bloods done on day 3 of your cycle - my AF went missing (for the first time ever) and the docs did a blood test at day 63 (or something like that). They suspected PCOS from the results and sent me off for a Pelvic ultrasound scan to confirm it.

I'm now waiting for an appt to see a gynae about where this leaves my fertility as DH and I are TTC. I can recommend the verity website as a good source of information about the condition.

Personally, my symptoms differ again: always had regular periods, then went on the pill, came off the pill in September, periods fell back into their regular cycle from the start then in May, I got this odd cycle and marched down to the Dr's who have been excellent with me and my condition. Not overweight, not overly hairy, but have diabetes in the family. Whilst I wait for the appt, I've been focussing on keeping fit, trying reflexology and trying to go low GI, which is supposed to help with the insulin resistance.

Good Luck Ladies!

Information Update:
So I had a cervical cancer scare in the summer. I ended up having to have an ultrasound scan. Whilst doing that I asked the sonographer to look and see if I have PCS and she no.

So only cake to blame for the weigh and spots then.

pipbin I am curious as to why you were asking in your original post if you could have PCOS when you already had the answer from a sonographer in the summer!

I have just been diagnosed with PCOS, don't have many of the normal signs, cysts around ovaries but ovaries are not enlarged but high levels of testosterone and LH (tests not taken at any particular point in cycle as cycles have been 77 days long). I too has a cancer scare 3 years ago but had no idea I had any fertility problems instil I starred TTC! As other posters have said its a tricky one to diagnose as it affects everyone is different but please see your GP if you are still worried and I wish you all the best for TTC!?!

I was asking about PCOS in May and had the scan in the August.

Aha, makes more sense! Was just a little confused!!

Really do hope that everything works out for you!! I would highly recommend talking to your GP and getting some blood tests done and once you have the results and absolute confirmation it's PCOS then an appointment to the gynaecologist!! If needs be, exaggerate the truth on how long you have been TTC (I did) just to get things moving a bit quicker!!

Sorry if I caused any offence before, I did not mean too!!

No offence take Mooley.

The sonographer was very clear that both ovaries look healthy and there was absolutely no sign of PCOS.