*****PCOS - Anybody in the same boat?******

[fruitloop79]

I don't know if there are any threads already started but I've just officially found out I've got PCOS this morning - I've always known deep down. Please tell me it's not all bad I'm feeling very sorry for myself.
We've been TTC for 6 months - only 3 cycles. I supposedly ovulated on CD36 (now CD43) this cycle. Gynae reckons not preg cos uterus lining would've thickened. (Had a scan this morning)

Any hints/tips on treatment/TTC?
How to deal with symptoms?

How did Posh spice and Jools Oliver manage to fall preg?

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Hi - this thread is a little out of date. We've got some more information on PCOS here. MNHQ

I was 1000mg a day (taken at 2 intervals) but the side effects were so horrendous that I cut down to 500 mg after 4 months, I couldnt take it anymore. Thanks for the tip about a low GI diet

Has anyone been referred to a fertility Clinic in Northwick Park Hospital?

i take 1500mg of Metformin (500 3x a day) and I didn't have any side effects? What did you have?? Yes definately try low GI and also acupuncture if you can....it worked for me and I was told at one stage I the chanceso fme falling naturally were very slim indeed......also (and this is really hard not to do) they more you worry about falling PG, the less likely you are to fall! I was contantly temping and it got to the point where I was literally screaming at my hubby to get home to do it....(it didn't work) but once I chilled out it happened...I also used a persona ovulator which helped me to chart when I was ovulated (or supposed to) as i only got periods every 60 days sometimes........I presume you are well read on PCOS??

i take 1500mg of Metformin (500 3x a day) and I didn't have any side effects? What did you have?? Yes definately try low GI and also acupuncture if you can....it worked for me and I was told at one stage I the chanceso fme falling naturally were very slim indeed......also (and this is really hard not to do) they more you worry about falling PG, the less likely you are to fall! I was contantly temping and it got to the point where I was literally screaming at my hubby to get home to do it....(it didn't work) but once I chilled out it happened...I also used a persona ovulator which helped me to chart when I was ovulated (or supposed to) as i only got periods every 60 days sometimes........I presume you are well read on PCOS??

Misha, I second your advice on doctors who tell you you are 'normal'! The same thing happened to me, and it seems like the same story from so many of us. I'm sure there are some male GPs out there who are good, but the only ones I've found who know anything about PCOS are women.

I'm also taking Metformin, side effects didn't bother me much, but my friend with PCOS absolutely couldn't tolerate it. I'm on 2000mg (1000 2x daily). It didn't seem to do much for me weight-wise or anything. For me it was getting rid of the stressful, sexless marriage and finding a decent partner, plus taking Agnus Castus, Saw Palmetto, Chromium, and Cinnamon. Cycles have become shorter and I ovulate much more frequently. Can't say what has helped most, now afraid to stop any of it!

I also support that 'normal' bloods don't rule out PCOS.

Happened to me as well. i'd have one or two that were a little out but then once repeated the conclusion was everything was within 'normal' range.

The internal scan however....showed up the pcos beautifully!

I think the fertility units tend to go by an overall accessment of the 2...that is what I was told. THey lean more towards the scan results though!

"I also support that 'normal' bloods don't rule out PCOS".

I would also agree with this assertion even though my bloods clearly showed the LH/FSH imbalance. I know of women who had a delay in receiving a PCOS diagnosis because the blood test results were not looked at properly by their GP .

The women I know who have taken this have built the dossage up gradually because taking a large dose in one go upset their bowels too much.

You definitely have to build up to taking higher doses of metformin. When I first started, I did get a bit of diarrhea, but I built up from 500 to 2000 over a few weeks. I stopped taking it for about a month or so, then restarted right at 2000mg and had a dodgy tummy for a few days, but it wasn't too bad.

I take 1000 mg a day with food, I also built my dosage up, but I still find that I suffer with horrendous pains at times. For me the pains are worse when I eat fried fatty food such as chips. I wonder whether fatty foods makes it worse or its just been a coincidence. My pains are more abdominal and it makes my stomach very bloated and gassy.

Hi,

I am 37 weeks pregnant and have PCOS having been on metformin and clomid (never worked) I eat very healthy diet (not to loose weight) stopped stressing about getting pregnant and here I am with a little girl in side me. i had approx 2 periods a year, am very hairy (but had laser treatment) weight gained on Clomid never went and you think generally it will never happen. I got preg. with twins naturally after all treatment and lost one and the other was ectopic.. DONT give up. a healthy positive attitude works and a healthy partner. I wish you all the luck in the world.. I was told I would NEVER have a child and at 38 year old it has happened.

xxxxxxxxxxxxxxxxxxxxxxxbig hugsxxxxx

Misha, fried food always has the same effect on me, probably not a coincidence. I used to get really bad abdo cramping with fried greasy food even when I wasn't on metformin. Sometimes bad enough that I'd spend half the night on the bathroom floor, somewhere between vomiting and diarrhea, horrible shooting abdo pain, enough to make me moan out loud.

I'd say try cutting out the fried stuff as much as possible and see if that helps!

Morning ladies, Hi and welcome to all the newbies!

Oh I just want AF to arrive now. I'm supposedly 16dpo now. I really really really dont want to take this course of progesterone I've been given. I'm gonna give AF till Sat to buck her ideas up. If nothing and no BFP(obviously) then I will get started on the tablets.

Come on AF you know you want me!!!!!

Hi ladies,

I don't see the point of blood tests to confirm PCOS. Why don't they just send women with suspected PCOS straight to the hospital for scan!!!! I find this so frustrating. I remember having a blood test which said I was slightly over on testosterone etc levels. But my GP sent me for a scan anyway not until I was 22 though. I suffered all my teenage years with acne and excess hair unnecessarily. GP's need educating on PCOS!!!!!!

I totally agree Moonlit And the scan needs to be an internal one. I had a regular U/S scan the 1st time, years ago and the results were no PCOS! I had a blood test not so long ago which came back normal! However, when they did an internal scan a few weeks ago, PCOS was very clear! I was an overweight teenager with excess hair. I thought I was a freak and it completely ruined my self esteem. I still have a problem with my self esteem as I'm obviously still hairy although I manage to control my weight. If only they had discovered PCOS sooner I would have had a reason for all these symptoms a long time ago! And I might not have had to wait 3 yrs for DS

AND I couldnt breast feed DS! I was devastated to say the least! I still am. Just to think there was a reason behind not producing any milk. I could have been given something to help!

PCOS cannot be determined on an external u/s scan. These scans have to be internal ones to be of any use.

I often ask if the levels of LH and FSH were compared when it comes to blood tests because often they are not when the result if given to the patient (rendering the test result meaningless).

My teenage years were punctuated by both irregular and painful periods. There were reasons for this (hence me often writing that if periods are either a) painful and/or b) irregular they get it checked out sooner rather than later) but I was left in ignorance for years. I was eventually diagnosed with both PCOS and endometriosis.

Am also fed up with ignorant GPs telling me that endometriosis is not common - soon put one such GP right on that point.

GPs certainly need educating re PCOS but there is still ignorance out there re this and other gynaecological problems.

Verity is a v good charitable organisation for women with PCOS and I would advise any PCOSer to make use of their website (which is www.verity-pcos.org.uk).

I could not breastfeed effectively either. In my case I had an emergency c-section under GA so that did not help any.

Oh Attila I also had a emergency c-section which also didnt help breast feeding matters! But I know loads of women who have had a c-section and breast fed to their heart's content! In fact I'm the only one I know who had problems! Except you guys of course
It's just heartbreaking when you're told throughout pregnancy that every woman can do it. I was very excited at the prospect of being able to offer my child one of the most important things in the world. I couldnt wait for that BF bonding time. In fact, I didnt bother buying any bottles or steriliser or anything like that! I just assumed it would be ok. Now I know what was causing my lack of milk production and I'm damn well determined to be able to do it next time!

Hi Ladies, just want to reassure you (in case you didn't read my earlier posts) that I was literally like Daisy the blooming cow and sucessfully BF both sons......apparantly it can go wither way, I guess I was lucky......

I must admit. I had issues breast feeding to. But I never thought it was linked to PCOS. Is it linked? I only managed to breast feed for 6 months, but with great difficulty.

i did 5 weeks and the health visitor told me to use formula as DS was losing too much weight too quickly

Hello ladies!!!!

I went to the appointment with the consultant at the fertility clinic and came clean.

I was lucky though - she was a very good and understanding doctor.

She first confirmed that I am definitely PCOS ...BUT...she said that there had to be a least 2 out of 3 factors to categorize someone as being PCOS.

1- You have polycyctic ovaries
2- You have a weight problem
3 - You have a hormone imbalance - usually testosterone

So I fulfilled 1 and 2 but my bloods were normal.
Interesting huh!

Anyway, she asked me about my last AF and when I said 1st Feb she blinked. Then I came clean.

She looked at my BBT chart ( which proved invaluable !!!) and pinpointed ovulation on day 28!!!! So she calculated my Due Date for baby being the 21st November as I had a long cycle.

I was sent down for a blood test and was booked in with the GP for my booking in appointment and got my BOUNTY pack!

It all feels so unreal.

Hi everyone

Dungungirl - I know what you mean about it all seeming weird; the night before my 12 week scan I couldn't sleep because it suddenly occurred to me that no one had checked that I really was pg! That's interesting about needing to fulfill 2 out of 3 criteria - I have polycystic ovaries, only ever so slightly high levels of testosterone, and tho I am slightly overweight both my gp and my specialist said they wouldn't class me as having a weight problem. So I fulfill one completely and 2 only a little bit ... odd.

I'm still waiting to hear back from my specialist. I rang her on Monday to say that I haven't started a period so I need progesterone and I haven't heard back! Even if she phones today it'll be Tuesday before I can get the tablets! It is the total lack of a sense of urgency that it slightly galling.

Hope everyone else is well and happy today

Dungun...come and join me on the Due in Nov 2008 thread...we can be PC and PG together!!!!!!!!!

As for the 3 things to define PCOS, my consultant said a similar thing, in fact I have so much testosterone if it wasn't for my love of pink and all things girlie I would think I was a man (nice tash,,,,see my previous post if you missed it!!) Oh and not forgetting I am PG!!!!

Hi Ladies - How are you all today?

DungunGirl - I was thinking of you yesterday. I was wondering how your appointment went. I bet the doctor was shocked! I hope you are enjoying your bounty pack, you deserve it. I hope some of your luck rubs off on me.

Hey Tigerschick - how are you hun?

Well I went for my blood test. I warned the nurse I was a fainter, so she was brilliant. I am lucky they do blood tests at my GP's so I don't have to go all the way to the hospital. Anyway, I never pay much attention as to what they are testing for. But because of Attila I did today. So the list is as follows;

PROLACTIN
FSH
TESTOSTERONE
LH
THYROID

I think that's it. I have to wait a week. I still have two leaky breasts. Seriously what is up with my body!!!!

Have a lovely Easter weekend ladies

xxxx

Hi Moonlit,

Well done you for being brave re the blood test and for paying attention to what they are testing you for!!.

I bet you my rather fetching Easter Bonnet (atopped with several Meerkats each holding a creme egg) that your prolactin level is elevated hence the leaky breasts. Also excess prolactin can interfere with ovulation. That problem though can be treated though with tablets.

Keep us posted re the results.

A Happy Easter to all

Attila x