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

Hi everyone! I found this thread very informative. I came off the pill in Feb and since then have been having very long and irregular cycles. BBT has been erratic and the fertility monitor and opks don't seem to collaborate. I'm getting quite concerned. The 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!

hi soul cysters ;) my cycle is 36 days usually. got diagnosed in august too - referred for internal scan etc. metformin i think works best for pcos ladies who have weight gain, but not everyone does. I'm not overweight so when i looked up the guidelines (NICE) most of them didn't seem to fit. I think clomid or ovarian drilling is supposed to work... will keep you posted.

It's so frustrating! The GP doesn't want to refer me or investigate further if my progesterone is ok. According to him the specialist will not do anything about irregular cycles until I have been ttc for a year. Not sure what to do now.

Hi Atilla, the LH is lower than the FSH. I had it done on day 4 though, as the weekend was in the way. I have written the results down in a thread I started.

Hi thought I would share when I was 18 I was told by the family planning clinic I had fertility problems as I started my periods then they disappeared which was fine at that age and I never looked into it, I concieved my first at 20 didn't find out till 17wks gone, after that I got diagnosed with pcos after having an internal scan and was put on metformin, in 2009 after looseing a few pounds I concieved again and found out I was pg 2-3 wks gone don't know why just my gut instinct was telling me dr refused to believe as that couldn't gage how far along I was as had no periods to work from !!! And had to wait to have a scan which was hard to believe when I finally saw the scan and realised it was happening, that was nearly 4 yes ago now and I have lost 4st in weight and have managed to clear pcos I'm aware if I gain weight again it will come back I have scans every 6 mths to check and was told on recent scan everything is working and I'm ovulating properly so there is hope to those who have it it's just hard and I have been lucky not to need medical help to conceive x x

"just phoned the surgery about the results from the LH, FSH and testosterone test they did. Result was normal! I'll go and pick up a print-out just to see what the exact results are. I guess it's good news though, but I am also unsure what happens next! Will probably see the GP again to ask for a progesterone test and talk about what we could do next".

Blamber

Would bear in mind that the results can look okay if only looked at separately. LH and FSH need to be compared against one another. What day in the cycle was this test actually carried out, if it was done anytime other than day 2 then the test was done on the wrong day.

glad you are feeling better fright. I am going to try a tjird tablet tonight (def no wine) .
blamber normal is good or so I'm told. Will the gp refer to gynae for an ultrasound of the ovaries?

I just phoned the surgery about the results from the LH, FSH and testosterone test they did. Result was normal! I'll go and pick up a print-out just to see what the exact results are. I guess it's good news though, but I am also unsure what happens next! Will probably see the GP again to ask for a progesterone test and talk about what we could do next.

Thanks nearly I'm already feeling much better today; I think the cold at least is on the way out (although I could've done with another hour in bed - shouldn't have stayed up watching Downton on iPlayer ). It was probably bad planning on my account to switch doses on a Monday.

Thankfully I've only got one more upping of the dose to get through.

fright for me side effects were only temporary, a couple of days.
I tried to move up to 3 tablets at the weekend. Without really thinking I had a glass if wine with dinner....I woke at 1am with pretty awful side effects. moral to the story, the doctor was right, met and alcohol are not a good combination

I'd like to have a bit of a moan...

So I've been taking metformin for just over a week now, and yesterday I went up from one tablet to two per day; one after breakfast and one after dinner, and along with that change came the loose tummy.

Please tell me the side effects are only temporary and that I'm not going to spend every evening on the loo. I've already got a bit of a cold, and AF with her cramps; I don't need any other ailments!

Yeah, I was glad he suggested it, but I am still not sure what it will measure. I know it's an indicator if you have ovulated, but since I get my period too early (so far after 8-11 days), I'm not sure if it can also measure if progesterone is high enough for ovulation but too low to have a sufficient LP.

gwena, that's typical isn't it! Well it's good that either way your AF has started.

Thanks, Attila. I was surprised about the comment that some believe it doesn't exist. I said that the symptoms were real, so why would it not exist? He said some think it can just normally happen. Well, I think there's nothing normal about the symptoms.

I'll get the progesterone tested on cd21 then, and if I haven't ovulated yet I might ask to repeat it 7 days after ovulation too.

blamber,

Re your comments in quote marks:-
"He said PCOS is very complicated and some doctors even believe it doesn't exist".

What's his source of that misinformation?. I'll be polite here and just call this person very ignorant, PCOS certainly does bloody well exist!!!. He is right about it being very complicated but I would as a PCOSer instead describe PCOS as being a very individualistic disorder.

"Luckily he is checking my hormones. First test is for LH, FSH and testosterone. He said it didn't matter what day to check these but online I read it should be done on cd3. Tomorrow is cd2 for me so I'll go then".

A day 2 test is a good day to have such a test done. Your LH and FSH levels need to be checked and compared against each other. With PCOS LH is often elevated compared to FSH.

"He was going to check progesterone as well but then realised it would be useless being on cd1".

At least he did not make that error. (You know more than this other person does!!).

"I can get that done later, but as my cycles are irregular he's not sure yet when to do it"

I would have it done around day 21 anyway; if the menstrual cycle is irregular the blood tests can be done according to calendar days.

Such tests should be repeated as well.

I saw the GP today and explained my worries. He said PCOS is very complicated and some doctors even believe it doesn't exist. Luckily he is checking my hormones. First test is for LH, FSH and testosterone. He said it didn't matter what day to check these but online I read it should be done on cd3. Tomorrow is cd2 for me so I'll go then. He was going to check progesterone as well but then realised it would be useless being on cd1. I can get that done later, but as my cycles are irregular he's not sure yet when to do it.

Gwena - nope, doesn't sound like you have anything to lose. At 14 stone it made a difference for me though ;). I found cutting sugar out incredibly hard for the first 14 days, then it got easier. I ate an awful lot of sweet stuff in pregnancy though, still am - I blame breastfeeding! I really should cut it out again I think.

PCOS covers so many variables. I wonder if at some point they'll divide it into multiple syndromes rather than one?

Hi gwena, saw you in a thread I started as well . I'm on cd41 of my current cycle, I think I ovulated 9 days ago (OPKs seem to work for me and I got a temp rise), but got some spotting today.

"but I was just wondering if you had come across metformin being used to prevent recurrent mc in women with pcos? I have googled and found some journal articles that say it is beneficial"

I haven't personally regarding this aspect of Metformin but I have not looked recently. It seems to be helpful in women with insulin resistance but not all women with PCOS are actually IR.

I was advised by my consultant that due to my sky high levels of LH, I ran a much higher risk than average of miscarrying. This problem for me was only temporarily (as the cystic follicles associated with PCOS do return) solved by having the cystic follicles on the ovaries diathermised. This in my case kickstarted ovulation and I am a parent as a direct result of this surgery. I was very lucky, I do know of some other women for whom this also worked but others have had this surgery and it did not.

I would not self medicate with AC as it can make some underlying hormonal problems worse. If you really wanted to use AC I would recommend seeking the advice of a properly qualified medical herbalist beforehand.

atilla I remember you from other threads (not in a stalkerish way ) from what I remember you gave very good advice on pcos. I hope you don't mind me asking but I was just wondering if you had come across metformin being used to prevent recurrent mc in women with pcos? I have googled and found some journal articles that say it is beneficial but haven't found anyone with much to say in rl.

Nerdybird

I would think that PCOS is the root cause of your symptoms now I am sorry to say. The pill can actually mask the symptoms of PCOS (which has always been there) as the pill has anti androgenic qualities.

Be very wary about using OPKs long term; I would not actually waste any more time or effort on such things. They are particularly unhelpful for PCOS patients generally speaking.

gwena, I think it would be best to do what the doctor says and take the progesterone if you don't get your period. It's better for your body to be able to shed the lining of your womb regularly.

Your right though in asking the consultant about AC, some say it messes up their cycle even more.