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

[gwenabee85]

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?

[AttilaTheMeerkat]

Who diagnosed you with PCOS back in August?. PCOS is an individualistic disorder that affects every woman with it very differently. The commonality though is the cystic follicles on the ovaries.

I would further educate your own self about PCOS because it will then stand you in good stead re treatment decisions. You may be given clomid - if you are given this insist on being monitored. Not all PCOSers are actually suitable to take clomid. No monitoring is unacceptable as you won't know whether its doing what it is supposed to be doing. Clomid's main job is to make the ovaries work harder.

Both of you should attend this appointment in December (who is this with?) as such appointments can and do cause considerable nerves. I would write down any questions you want to ask ahead of time, no question is daft.

//www.verity-pcos.org.uk is a good website.

Temping is of no benefit at all if PCOS is present so am glad you're no longer doing that. It is likely that you are not ovulating regularly if at all currently. Do not buy OPKs either; again these are useless when it comes to PCOS.

[vibee]

Well, opks don't work for some (maybe even most) women with PCOS but they do work for some, including me, as evidenced by the 6 month old wriggling next to me.

I didn't actually have a period between coming off the pill and getting pregnant - about 4 months in total, but the opk spotted the moment. Actually I had terrible ovulation pain, thinking back, so I'd probably have spotted it anyway! But I digress.

I know what you mean about long cycles. It's nice to have some company in that respect, because the usual cycle for people doing the two week wait is much faster than it is for us.

I'm ttc number 2, if I can. I'm still waiting for periods to return, 6 months on. I'm an old duffer so can't afford to wait longer. So I'll join your thread if you'll have me!

[vibee]

Oh, and another website that's good is soul cysters. Gotta love a medical pun ;)

They have boards for every possible permutation of PCOS, medicated, unmediated, complementary therapies and so on. Really useful stuff and nice people to boot.

[blamber]

Hello! I came off the pill in April and since then my cycles have been all over the place. I got my first period over three months after stopping, and since then ovulation has been late and I get my period only a week later. GP told me to wait until Christmas before he's willing to do any investigations.

This cycle I also had ewcm on and off for two weeks! It's terrible having to wait so long, and then especially in my case when my period shows up too soon. I feel like I just have no chance to get pregnant at the moment!

[nearlyreadytopop]

hi! I will join you
Diagnosis many years ago when I was 19. 1 ds now 2 conceived after 18months of trying. I took metformin and agnus castus. Now thinking of ttc again after 3 mc. I'm back on metformin and a low carb way of eating. I have lost a stone in the past few months and my period arrived. So waiting to see what my cycle is like before jumping back into ttc.

[Frettchen]

'Soul cysters' made me chuckle. Will definitely remember to check that one out.

Anyway, hi. I'm newly diagnosed with PCOS, by which I mean I saw the Dr yesterday who said the words 'yes, you definitely have PCOS'. I've been prescribed Metformin, starting at 500mg daily and gradually rising to 1500mg (3 doses; one with each meal)

I'm not TTC just yet, although it is definitely planned for the not-too-distant future.

Took my first Metformin pill last night with dinner and have been feeling delicate ever since - not queasy and vomity delicate, just odd. Not sure if this is because I'm expecting dodgy tummy side effects, or a stress thing, or actually down to the medication, but I'm hoping it's not going to be a long term thing.

So yeah; that's my moan of the day... It's more of a little whine than a proper moan!

[AttilaTheMeerkat]

Metformin can play havoc with the stomach but if you are worried seek proper medical advice.

[Mozzy01]

Hi All
I'm 25 and currently ttc for baby 1 and the Dr thinks I've got PCOS (going to see a fertility specialist in 3 weeks super nervous!!), I haven’t had AF for over 4 months and I have only had 2 AF's in the last 10 months. I’ve been ttc since the beginning of Jan. I’m getting really down now as I’m desperate for a baby and I feel alone as everyone around me seems to be finding it really easy to get pregnant. At the moment I have just been told that I have lots of cysts on my ovaries, but I’m struggling with acne too, the Dr thought this could also be a sign of PCOS.

[Frettchen]

Thanks Attila

I'm not too worried about it at the moment (have suffered from infrequent bouts of IBS in the past, so am no stranger to stomach havoc) but if it doesn't settle down once I get to full dosage (or if it gets worse as I increase) then I'll definitely go back to the doc to address it. I think it's more a combination of expecting side effects and maybe some anxiety that the waiting is over and I'm now properly diagnosed and have to start seriously thinking about what happens next in the Big Plan (either move house or start TTC - my head says move house, my heart says TTC)

[nearlyreadytopop]

when I started the met I took one tablet after breakfast for the first week and then added a second tablet after dinner the second week. I had got a bit slack in taking them and now my doctor wants to up the dose so am working up to 3 tablets per day. I found taking after food and slowly increasing the dose does help. Each week I had a slightly dodgy tummy for a couple of days and then it settled down.

[Frightchen]

This means I'm going to have to start having breakfast... Don't currently manage 3 meals a day.

Is it better to take them after food or with food? Or doesn't it make much of a difference?

[woodwaj]

Hi all. I am 27 been TTC No.1 for 13 months now, I was diagnosed with PCOS in August and I am currently on cycle 2 of clomid. I had a scan of my ovaries a couple of weeks ago but the nurse didn't show me the screen and not had results yet. Looking back I should have asked to see the screen but I was bursting for a pee!!

[nearlyreadytopop]

fright I have only taken it straight after food so I don't know if taking it in the middle of a meal makes any difference. I don't know if its my imagination but I have also noticed a reduction in appetite. Can only be a good thing

[gwenabee85]

Attila I was diagnosed following day 2 blood tests and an internal scan which found my ovaries to have small cysts, by a gynae consultant at my local hospital. I'm not very happy with the way my last appointment went so I will be writing questions down, and taking notes while I'm in there too! She told me last time that when I went back it would be to arrange for my tubes to be checked, DH SA and after those results we'd see where to go from then. God knows how long I'll be waiting with the NHS though.. :/ I've read soooo much about PCOS now that I'm sick of it to be honest! And my only sympton is irregular cycles so a lot of it is seeming irrelevant at the minute..

vibee of course you're welcome to join, the more the merrier (?!) and it's good to hear that you got pg naturally with PCOS, gives the rest of us hope! :) and fingers crossed for this time round

welcome to everyone else, nice to have some like-minded company, I've not told anyone in real life we're ttc or about the PCOS so I feel like I'm going crazy half the time, and my poor DH doesn't know what to say when I start ranting about it!

I've considered trying agnus castus but been a bit scared off by some stories on the net, I'm going to ask my consultant about it in December. She also told me to take a week of progesterone tablets if next AF hadn't arrived by end of October (last AF started 18 July) and I'm a bit reluctant to be honest... I don't want to put any more artificial hormones into my system really, but also kind of hoping that it might kick start my system to do it itself the next time around!!

[woodwaj]

I tried Agnus Castus for a while, it didn't seem to do anything and I also read bad things about it so stopped taking it. I know how you feel about not telling anyone I do find it easier. I can imagine I would get a lot of sympathy that I don't want, I like to stay below the radar!!

[vibee]

I wouldn't say totally naturally. I cut out sugar, lost some weight and took metformin for 3 months. No clomid though, thankfully. My sister also has PCOS and is having a much harder time with it. She has been through 6 cycles of clomid, which is all she is allowed to take, without success. It's such a variable thing.

I'm wondering whether to ask to be prescribed metformin again - I stopped taking it when I got pregnant (though have since heard you should keep taking it as it lowers the risk of miscarriage, so I got that wrong!)

[NerdyBird]

Just joining in too. I'm also on the thread for people trying to conceive after MC. i was diagnosed with PCOS about 6 years ago (internal scan).

Wasn't given any other advice apart from 'keep taking the pill' which was fine at the time as it controlled my symptoms quite nicely.

Stopped the pill at the end of last year to TTC. Was most surprised to have a light period end of Jan. Got pg next month, but miscarried. Last 4 periods were all 35 days, but this month I am on day 43 and it hasn't shown up. My skin is not great either, even using the topical antibiotic which normally keeps it under control.

So I am wondering if PCOS has suddenly sprung to life and is causing this?
Has anyone else had a sudden change in cycle like this? PG tests negative.

I've been able to use OPKs, I think some women with PCOS get high levels of LH all the time but I don't think everyone does. I've certainly had enough negative ones!

[blamber]

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.

[AttilaTheMeerkat]

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.

[nearlyreadytopop]

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.

[gwenabee85]

woodwaj totally. we got married last year so I think my mum is wondering when I'm going to make 'the big announcement' but I don't want that kind of pressure!

vibee i was considering trying low GI but I'm not sure I could do it!! I'm 5'8'' and 10 stone so I don't think losing weight would do me any good. I'm wondering whether the doctors would prescribe metformin but I'm not entirely sure what it does, so not sure...

nerdybird I'd been on the pill for 9 years so I only realised there was a problem when I stopped in December 2012. I do know that my cycles were normal before I went on the pill and can't help but wonder if I hadn't been on the pill this wouldn't have happened?

blamber I'm going to start it on Friday, I know I have to, I was just hoping I wouldn't have to resort to it! how long was your most recent cycle?

[AttilaTheMeerkat]

"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.

[blamber]

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.

[vibee]

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?