PCOS/Long cycle-ers - place to moan/chat

LAM, that is insanely quick! Did you have any other problems beside not having your AF? My GP wasn't bothered it had been over three months after stopping the pill and I didn't have my period yet. Even when I got my period but my cycles were still messed up after that they just wouldn't do anything.

I stopped the pill in April and have had some blood tests done. My GP doesn't think it's pcos as my LH/FSH was fine, but he won't do a scan or anything. I can't believe how much difference there is between GPs. It's frustrating wasting months and months, there is nothing you can do, you just have to wait for the GP to finally agree that it needs to be looked at.

Thanks for the welcome. All tests so far have been normal. It was the scan that showed PCO. From what I can make out swabs were for chlamydia etc as they will start treatment as soon as they have results. Just seemed to be rushed through, and because it was all so quick I didn't have time to think about questions etc. I didn't even know what the swabs were for until I came home and googled.
Get results of swabs and DH's sample in a couple of weeks, there is no reason to suspect anything is well suspect with these, just routine tests before they start treating me. Sounds like some of you are further down this path than me, what happens next?

Just seen this thread and although a little old thought I would join in if that's ok...
I got told I have PCOS this week. All blood tests done already, all normal. Scan confirmed it. So have already had swabs done, DH is doing his sample the week. Then have appointment where they will start "the ball rolling". It's all been a bit quick, tests started off trying to work out another issue. Came off pill and had withdrawal bleed at beginning of September to TTC, no AF so when I mentioned this they scanned me straight away. Given that its all happened quickly, scan, diagnosis, swabs all this week I didn't really ask the GP anything as I wasn't really prepared. Any advise as to what will happen next?!

hi gwena, had my bloods done and got low progesterone. Even then the GP was really reluctant to refer me, wanted to wait till the year of ttc was up. He thinks it's just the pill causing this and it should improve soon. I was really upset though and luckily he has now agreed to refer me.

Started spotting again at 9dpo as well and got my period soon after. So now it's back to waiting 4 weeks for ovulation. Yuck.

What appointment is next week, gwena? The acupuncture or the hospital?

thanks, gewna, definitely let us know how it goes. I got my temperature rise, so will be off getting my bloods done next week!

hi everyone , I don't know what happened but this thread fell off my list.
Hope everyone is doing well? Will be interesting to hear how the acupuncture goes.
I am still trying to get up to 3 tablets per day of metformin. I can take two with very mild side effects but the third causes major tummy issues .
On a positive note my weightloss has continued even though my diet hasn't been as good as it was and I now have a 6 week cycle which I am very pleased about .

Hi gwena, hope the acupuncture works! I don't have any experience myself. I am quite sceptical about it, but then again I have heard some good stories about it. I tried reflexology once, but I have more doubts about that working than acupuncture.

I'm on cd27 now and had an LH surge. Finally! I have no idea why it's always taking so long! But hopefully I'll get a temperature rise soon, and then I can schedule the progesterone test.

Hello

Just wanted to give anyone trying to conceive hope I have the condition. Conceived by accident 6 years ago, after weight loss drive before xmas, really cut back my diet, and walked an hour briskly every day, I felt amazing, weight fell off and then there was a special little surprise. I had also been taking agnus castus for about two months.

Second time round, tried for two years but casually. Nothing was happening so was put on metformin, took AC again and made more effort to eat healthily, and excersice but not to the same degfree as first time round, I then had a personal trainer and after a few sessions, and after 7 months was pregnant again.

BTW I had no idea what my cycles were at all, I had not had a period for at least three months before conceiving my second, I have never watched my cycles or counted days etc.

Attilla You said AC can affect other underlying symptoms, what are they do you know?

Hi everyone, I got diagnosed with PCOS in Jan 2012. I already had a 1year old DS by then who was conceived naturally after 3 months. In July 2013 I came off the pill TTC baby no.2, so far been unlucky, and my cycles are 35-37 days long at the moment. When the doc first diagnosed me he said when we were ready TTC again to come back to see him, but don’t know if I should wait at least 6 months (unless I get pregnant before then) or arrange to see him now to find out our options? I don’t want to waste his or my time though. I haven’t been using OPKS at all, as I read on another thread that the wouldn’t work if you had PCOS?

TIA!

Hi Blamber, Don't know re irregular cycles but I think PCOS does disrupt them yes.
Love the positive 'awesome eggs' perspective!

we were referred in july - apparently we will get to see a consultant in December...

DDinah, did you have ultrasounds of your ovaries when you had your surgery? I think that's how it's diagnosed. I don't know if it can appear but I guess at some point the disease must develop as you're not born with it??
Partenope some people still cycle normally with pcos. Can you get your gp to refer you to a cycle monitoring unit? they'll do different bloood tests on different days of your cycle to confirm ovulation etc.

Hi All,
I've just been diagnosed with PCOS so very new here. I've tried to use OPKs but can now see these two don't go together, is it because there is a surge in LH but it doesn't mean anything, or there's no surge in LH at all? I asked the GP but he wasn't sure and all the stuff on the web is very scientific. I used OPKs two months in a row and they did show the surge in LH, so confused? I'm 35 and would be trying for number 1

Does anyone know if PCOS can just appear? I had surgery 4 years ago (when on the pill) to check for endo and was told that everything was in 'good working order' now 5 months post pill struggling with long cycles and acne, I've been using OPK's since Friday (CD16) and not had a positive yet (I've no idea when to aim for anyway). Temps are low/irregular.

Nolly, does PCO cause any symptoms though, such as irregular cycles?

OPKs have worked for me! Temping as well. But I know that for many with PCOS these methods are unreliable.

6 weeks doesn't sound too bad, hope they'll be helpful!

I read an interesting article in the newspaper on menstrual cycles. Sorry it's not in English, but I can explain what it said. A professor in gynaecology has rebutted research that the cycles of women who live in the same house adjust to each other. Well, I thought, if that had been the case it could solve our problems!

Anyway, he said that the length of cycles depends on several factors. One is weight, because hormones stored in fat lengthen cycles. Another one is age, because young women have more eggs than older women, and therefore the process to chose the dominant egg takes longer. In an older woman fewer eggs compete with each other for maturation, which doesn't take much time. He said that for most women the cycle length can be a surprise every time and the follicular phase can differ greatly, from two to four weeks.

But I thought a woman usually has stable cycles looking at the short term (i.e. a year and not 20 years)?

It is a nicer way of looking at long cycles though - wow I have so many good eggs it takes ages for one of them to win the fight for maturation!

hi guys. I've never had much luck with any ovulation prediction kits of any kind, have you guys?

I think there's a difference between PCOS and having PCO. i.e. you might have non-maturing follicles but that doesn't necessarily mean you have extra testosterone and weight gain etc. the verity page is good but it is tough to find good info.

I've had internal and external scans and 2 sets of blood tests so far. Waiting for the consultant referral - 6 weeks so far, how long have you guys had to wait?

coco i think external is more acccurate for diagnosis. it's really not that bad, not nearly as bad or painful as a smear for example. it only goes in about an inch.

Thanks Attila, I will speak to the nurse and see if I can have cd 2, instead of 5 test. Thanks for reassuring me about the internal scan. From reading all the posts, I think that will be the next step.

Blamber you are right about monitor being useless after the first peak. I wish I knew that before buying it. It did give me a peak reading and the line looked fairly good. But then I picked up another peak on the opk about 10 days later when ovulation type pain prompted me to test again. The temperature rise was not consistent but seems to tally a bit more with opk than the monitor.

But as you ladies have kindly pointed out, these tests are obsolete if I PCOS.

Stupid question, but to you, does it sound like I may have PCOS?

The monitor and other OPKs work differently. Perhaps the monitor is more sensitive, so it registered a peak when the OPK was negative. So you might have had a little LH surge but not enough to ovulate. I'm not sure if the monitor can be used after it detects a peak, I think it only does one peak and then you have to input your period? Or were you just reading the sticks?

"GP has finally agreed to give me a progestron and LH and FSH test. She said she will do them on cd5 and cd 28 to start with. I am considering paying for a private scan as the worry is driving me crazy now. Could anyone please tell me is it has to be an internal ultrasound or can it be a normal ultrasound? Thanks in advance!"

Coco

the GP should do the test on day 2; that is the standard day for the LH/FSH test. Day 21 is for the progesterone measurement; I would think that if your LH and FSH levels are awry to start with then your progesterone level will be too low as well.

Internal ultrasounds are the norm for assessing the state of the uterine cavity and ovaries. The fear of this is worse than the reality (have had more blood tests and internal ultrasounds than I care to mention).

With irregular cycles OPKs and charting are not worth bothering with as they can give confusing and misleading results.

Thanks blamber. The monitor gave me a peak on cd 18 last month with a negative opk. Then on cd 30, i got a peak on opk and a low fertility reading on the monitor. So I don't really understand what is going on. Hopefully once I have a diagnosis, I can try to focus on researching the problem and also make some sort of peace with it.
Good luck with your test results, hope you manged to get more information?

Hi holly, do you have to wait long for your scan?

Keep us posted indeed!

Hi coco. My GP didn't think a scan was necessary either. I'm not sure what more it could tell, but I guess that if the hormones are ok, it can help to diagnose pcos. I thought it was internal, but I'm not 100% certain.

I feel your frustration about mad cycles after coming off the pill. How do your monitor and opks not match? I did read that with pcos the lh levels are higher than normal, so opks don't work. In my case, I do get a clear surge, but it always takes weeks for my body to gear up to that.

It's good your GP is looking into it though!