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Conception

When's the best time to get pregnant? Use our interactive ovulation calculator to work out when you're most fertile and most likely to conceive.

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Original poster

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

93 replies

gwenabee85 · 14/10/2013 19:44

Was surprised reading a few threads recently that there appear to be quite a few of us in the above situation, but I can't see any chat threads for us, so thought I'd start one!
I'm 27, ttc#1 and currently on CD89 :| I was only diagnosed with PCOS in August, and have got a further appointment to 'discuss' what's next in December.

(TMI alert..) I've been having ewcm for about two weeks on and off now :/ oh, and I was temping but stopped about a month ago as I think it was stressing me out too much!
anyone else?

OP posts:

blamber · 17/10/2013 11:49

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.

Original poster

gwenabee85 · 19/10/2013 19:20

Well, after deciding i was going to start taking the progesterone on Friday, started spotting on Thursday and af arrived Friday, typical! So that was a 91 day cycle :/

OP posts:

AttilaTheMeerkat · 19/10/2013 21:23

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.

blamber · 19/10/2013 22:06

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 · 19/10/2013 22:07

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

Original poster

gwenabee85 · 20/10/2013 14:00

I know, time to start again! :/
and that's a good point about the progesterone, mine wasn't tested, the only tests I had last time were the day 2 bloods.. useless doctors!

OP posts:

blamber · 20/10/2013 15:14

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.

Frightchen · 22/10/2013 11:04

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!

nearlyreadytopop · 22/10/2013 22:20

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

Frightchen · 23/10/2013 11:01

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.

blamber · 23/10/2013 13:21

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.

nearlyreadytopop · 23/10/2013 13:29

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?

AttilaTheMeerkat · 23/10/2013 14:10

"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.

Dawn1609 · 23/10/2013 14:20

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

blamber · 23/10/2013 17:00

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.

blamber · 24/10/2013 12:43

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.

nolly3 · 25/10/2013 15:56

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.

coco808 · 25/10/2013 22:07

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!

blamber · 26/10/2013 12:52

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!

blamber · 26/10/2013 12:54

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

Keep us posted indeed!

coco808 · 27/10/2013 13:53

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?

AttilaTheMeerkat · 27/10/2013 14:00

"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.

blamber · 27/10/2013 14:07

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?

coco808 · 27/10/2013 18:57

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?

nolly3 · 28/10/2013 09:20

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.

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