PCOS? Share your stories with me please!

Hi there, I was told I had PCOS when I went to the doctor after a year TTC. A few months later I was pregnant naturally. They told me the next stage (if I didn't get pregnant naturally) would be clomid. I did do a lot of cutting out alchohol, cutting down caffeine, walking lots, taking pre-natal vitamins before we actually got pregnant. Not sure if that helped or not but it couldn't have hurt. Good luck! I hope you get pregnant soon. x

To clarify - I was lucky second time. Had no symptoms either time though expcept period pains, which the first mnth turned out to be exactly that and the second month turned out not to be!

Good luck.

mumtorobbie - what dosage of metformin were you on in the first 12 weeks? I have PCOS and just got a BFP this morning (had two MCs previously). Even though my doc will tell me to come off metformin, I'd like to stay on it for a while at least and so was thinking of reducing my dosage from 1500mg per day to 1000 per day. Wondered what dose you were on in the first trimester?

blingloving Thats great news that u conceived on the 1st cycle of clomid.
I am still 2day having funny feelings in my tummy and it is very solid.
Just have 2 wait another 11 days to see if the 2nd month on clomid has worked for me.

Emmalou - I didn't have any symptoms. I ovulated, as it turned out, on Day 12 but didn't have any symptoms until about Day 26 or so when I experienced what felt like PMS - mild ache in my tummy etc. But my period didn't start and I started finding myself quite emotional etc. But due to having had to take a pregnancy text at least monthly, often more, for the previous 18 months I was loathe to take one. So put it off until day 31 (the first mnth on Clomid, I thought my period would start by day 29 at latest so when it didn't come I tested on day 30 and was devastated to see it was negative so I was trying to avoid that. DH eventually went out and bought one and forced me to take it when he decided I was clearly pregnant! )

Mumtorobbie - my gynae's opinion on the MC thing is that it's not the PCOS that means PCOS suffers tend to have more MC but the fact that most women who struggle to conceive as a result of PCOS are older, and it's a proven fact that older women have a higher chance of MC. So it's not the PCOS in itself that's the problem, but the fact that we have taken this long to get pregnant. She pointed out that many 20-something PCOS sufferers probably don't even know they have a problem and even though they only ovulate a few times a year they're so busy shagging like bunnies they have a good chance of hitting that one or two sweet spots a year!

blingloving
I am on day 16 of my 2nd month of clomid i have Polycystic ovaries.
Today i have had bad stomach cramps and feeling a bit sick and yesterday sorry 4 tmi but had some brown discharge can you sheed any light?

Thanks

I've had PCOS for donkeys years and spent most of my early 30s fretting about not being able to conceive (even though I wasn't even trying and despite my gynae saying that he'd be a rich man if he had a £1 for every woman who thought having PCOS would mean no babies..ditto for women over 35).

Because I had a great GP and gynae, I was put on Metformin. I started it six months before TTC, my periods were bang on every 28 days and at 36 I conceived within the first month of trying.

I had a trouble-free pregnancy and have a gorgeous 2 year old DS and at 39 we're now about to start trying for a second baby.

However, and this is something that many in the medical profession are a bit divided on, many PCOS sufferers are prone to MC so my consultant advised me to stay on the Met for the first 12 weeks, which I did.

Although Metformin can give you an upset tummy I've never had any problems with it so see how you go and maybe that might be the next step for you. Good luck!

Hi, I was diagnosed with PCOS about 8 years ago. I am size 8 (pre-pregnancy), BMI 19, no problems with hair or skin, had regular periods (30 day cycles) for years. I did take Agnus Castus and Evening Primrose Oil for 9 months (in fairly large quantities daily) before trying to conceive. Conceived naturally after 2 months of trying... Don't give up just yet!

Oh, brilliant!

No. On Clomid. But it worked second time out. Yay!

Thanks, Bling - that's helpful. I didn't realise that they'd bother with a day 21 test if you had super long periods...

Did you manage to get pregnant naturally, in the end?

Chateau - my day 2-5 tests showed as normal. but my day 21 test showed that there was nothing even vagually resembling ovulation happening. So although she didn't think it was PCOS (not sure why) she felt that there was clearly something wrong as otherwise there's have been some hormone thing happening after 21 days. Hence the move to a gynae.

Frankly though, my GP's attitude (and she was great) was that as a woman in my 30s with demonstrably extremely irregular periods, I should be checked out. As she said to me, "even if you are ovulating now and again, at 30 plus, and with a full time job, there's no way you're going to be BDing every 2 days for up to 80 days!"

I did go private though - the first NHS appointment I had booked happened AFTER I was already, as it turned out, pregnant.

I know, it's maddening!

I've already seen two docs at the same surgery - the first was very grudging about even sending me for blood tests and gave me the whole 'lots of women with PCOS go on to conceive naturally, so just relax' line. I knew that if the bloods came back as normal she wouldn't refer me, so I booked in with another doc to read the results...but she also said that I should take a wait and see approach for now, and that she couldn't refer me until we'd been trying for a year.

I'm seriously thinking of shelling out to see a private consultant - it all depends on how much he/she is likely to be able to do, with 'normal' blood results...

Oooooooh, that drove me nuts when I was trying to tell the GP that I thought there was a problem.

Can you see another Dr? Or can you afford to have a consultation with a gynae privately?

I don't know where you live but I've found the medicentre gps (in London) can be helpful in situations like that as they can refer to NHS consultants but it only costs £65 or so to see them rather than £200+ to see a consultant privately.

Sorry you are having a tricky time...

That's what I thought, gardenp. But what can I do if the doc won't refer me? She's said that I should come back when we've been trying for a year...

Sorry, x-post! That is confusing for you ...

All those symptoms and having cysts sounds like you need something more than being sent home with an "all normal" stamp

Oh I just re-read your post, sorry, I missed the last bit. That sounds just like me when I first tried to get a diagnosis.

I hope you don't have it but you need to know for sure. A gynae would take everything into account rather than just making a decision based on one test and it sounds like you have quite a few of the classic symptoms.

I have been heartened by how easy it has been to manage the symptoms once I knew what was going on.

But you need to know which bits of the syndrome are most prevalent for you in order to know how best to deal with it

Cheers, gpixie. MY LH/FSH was normal, and my doc said that they actually pay less attention to those results than to estrogen/testoterone/insulin, anyway. All of which also came back as normal.

It's frustrating, because that acne that I have is clearly hormonal, so maddening not to see the results borne out with the bloods!

Chateau which blood tests did you have? My LH/FSH was "normal" (LH was a bit high but well within what they considered healthy levels and the ratio with FSH was almost 1:1) but other markers pointed to PCOS (raised oestrogen, testosterone and insulin) which was then confirmed by a scan. My understanding is that the NHS just do FSH / LH and day 21 progesterone tests.

If you think you might have PCOS, it could be worth pushing for further tests.

HTH

"my GP ordered the first blood tests and ultrasound and when giving me the results told me that I DIDN?T have PCOS but referred me straight on to a gynae who took one look at the ultrasound and said my GP was talking rubbish!"

"wasn't sure that I had PCOS but as my blood tests showed nothing happening either she sent me to a gynaecologist"

Did you guys both have blood tests that came back as normal, then? My GP wouldn't refer me to a gynae because there was nothing unusual about my blood results - despite ultrasound scan showing multiple cysts, my long cycles and bad acne.

I have PCOS. Was originally diagnosed as a teenager and it was managed by being on the pill until DH and I wanted TTC. At which point I went back to a very irregular cycle - I had cycles varying in length from 33 days (shortest) to 120 days (longest). GP (ie completely different medical personnel and system from my original diagnosis) also wasn't sure that I had PCOS but as my blood tests showed nothing happening either she sent me to a gynaecologist who very quickly confirmed the PCOS diagnosis on ultrasound.

I do struggle with my weight and took metformin for a while to try help with that. Unfortunately, it didn't help me lose weight but I did find when I was obsessively eating and exercising, the metformin helped me to keep that weight off when I was eating normally. I agree with a previous poster that regular exercise and food is best, but find it difficult to do. Low impact exercise, often, works best for me. I have never suffered from the acne or excessive hair growth that is so common to PCOS sufferers.

After a few months I went on Clomid and got pregnant the second month. I was monitored closely the first month and then was to continue taking it for 3 months in total after which I was due to go back for more monitoring/tests as normal.

The good news is that my pregnancy has been completely normal so far and the baby appears to be healthy and doing exactly what he is supposed to be.

Good luck.

And agree with Garden on the 'intensity' bit of exercise -- I need to Jog / Run to feel that goodness - walking just does not cut it for me. Regular and high intensity exercise is just right.

Oh and also there is a difference between having Polycystic ovaries, and PCOS (Syndrome) and PCOD (Disease).

Cavemum Hello from the FTF thread. Agree with Atilla that PCOS is a very individualistic condition and the range of symptoms vary.
I have PCOS. Identifying what PCOS is as SEPERATE from the symptoms is helpful and important. The best book I have read on the subject is this - Elsheikh M, Murphy C, Polycystic ovary syndrome: The Facts, Oxford University Press, 2008
ISBN 978-0-19-921368-9

So what is PCOS? Here's my explanation. It's a condition where my endocrinal system (regulation of hormones) is 'mad as a hatter'. In a month, my body produces different hormones at different strengths - some of them at expected levels (my lh/fsh levels have consistently been normal), others at varying levels. From a fertility angle, this impacts my ovaries who are trying to get the necessary dosages of specific hormones at specific times to help grow and release an egg. Clearly my ovaries are not happy given the varying volume and types of hormones they are receiving. Hence I do not ovulate regularly. Hormone levels also impact other parts of the body - Thyroid, Insulin-related functions, Liver.. So this erratic pattern of regulating hormones can lead to other health issues over the years.

From a symptoms perspective, I do have a lot of hair growth. I manage this with regular parlor visits. I have regular periods most of the time even if I do not ovulate. I am overweight - but this is where I made the most interesting discoveries. I learnt that PCOS isn't the reason I am overweight - it's just one of the factors that assists a lifestyle of obesity (if that's what I choose). There is growing research that links PCOS with Insulin Resistance and this relationship is what makes weight loss slightly more challenging for PCOS folks. A low GI/GL diet works very well for me because it effectively counters one of my key habits - IE, I constantly eat. My cells given that they are very efficient will say no quite quickly to extra energy. So my body's insulin then efficiently stores the excess sugar as fat. Eating constantly has nothing to do with PCOS. It has to do with how I handle anxiety and it's in my mouth. Munching on easy sugars (chocolate) makes me feel less anxious. When I stop feeding my anxiety (literally and metaphorically) my weight falls off.
Regular exercise with an emphasis on REGULAR is also key. Regular everything is actually key. I have found that because my endocrinal system is off-key - the more things I do regularly, the better impact it on my overall health. Regular exercise, regular snacking, regular drinking of water, regular time to bed and regular wake up time. Easy sugar foods like white bread, white sugar, doughnuts, chocolate all of these create sugar spikes in the system and hence is very UNREGULAR Avoiding these help me immensely too.
Drinking water is key -- I have to force myself to stick to six meals a day - each that involves warm water. This is perhaps why in a Chinese restaurant I eat the least because I am so content with my jasmine tea - I peck at the rest of the food. From a diet perspective, I've also read that cruciferous veggies are good to have - Cauliflower, Cabbage, Brussel sprouts, Brocoli. Good news is I like three of those four..so most days will have some of it. OK - long blurb - hope you find something useful :)