PCOS? Share your stories with me please!

[CaveMum]

I was diagnosed with PCOS last week.

DH and I are TTC#1, I came off the Pill last May but have not had a period since last June!

I have to admit that I was a little surprised at the diagnosis as I had assumed that PCOS was a problem for "larger" ladies (I am a size 10).

My classic symptoms have been awful acne (skin like a 14yo!) and some facial hair issues, which to be honest I had assumed were due to the fact that I naturally have quite dark thick hair anyway.

I have been prescribed some tablets to induce a bleed before having an HSG test. Providing this comes back all clear I will be moving on to Clomid.

The point of this thread is to hear about other people's experiences, what worked for them, etc. I have been told by a few people that Vit B6 and Vit D supplements can help, as can Agnus Castus and Evening Primrose Oil. Did any/all of these work for you?

I've ordered a few books from Amazon so that I can read up on the condition, and also to get more info on a low GI diet (which I have also been told can help).

So, any advice you are willing to share?!

i have pcos have some symptons overweight unwanted hair periods extremely irregular can be six or seven months in between at times however i have two children conceived naturally ds1 extremely lucky we conceived within weeks ds 2 took twelve months just dont give up hope we didnt try any remedies as such just had regular sex as i had no idea when i was going to ovulate best of luck

Cavemum,

Verity's website is good to look at re PCOS www.verity-pcos.org.uk.

As you have seen, PCOS is a very individualistic disorder and affects each woman with it very differently. The commonality is the cystic follicles on the ovaries (these disappear, only to be replaced by further cystic follicles. Some of these cystic follicles pump out hormones, others are dormant, one may contain an egg).

When I was dx'd with PCOS I was also a size 10.

This is also not a condition for a GP to be messing around with; they do not have either the time, knowledge or the expertise. You should be referred to a gynae as a matter of course.

If you are placed on clomid then you should be monitored whilst on it with preferably both blood tests (it can raise LH levels markedly and can impede fertilisation) and ultrasounds to see that an egg has left the ovary. No monitoring is not acceptable as you won't know whether its doing what its supposed to be doing. Clomid's primary job is to make the ovaries work harder. It is not always suitable for all PCOSers to take and clomid resistance can happen hence monitoring being also important.

Would be wary of self medicating with Agnus castus as this can sometimes make the underlying hormonal imbalance worse. If you really want to try this, I would suggest you first of all seek out the advice of a properly qualified medical herbalist.

Do not use temp charts or OPK's; both are unhelpful with PCOS.

Thanks both for your comments.

Atilla I am now under a gynaecologist ? 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!

I?m waiting for my GP surgery to process my prescription of tablets to induce the bleed, so should get those later this week. All being well I will have my HSG test in 2 or 3 weeks time (gynae told me to call the hospital on the first day of my bleed to book the appointment).

Thanks also for the advice re AC ? I?d been contemplating seeing an acupuncturist (I?m quite a stress prone person at the best of times ) so will hold off on anything herbal till I?ve spoken to her (I?ve been recommended a lady who is a fertility specialist).
Do you think there is any harm in me looking at the B and D vitamin supplements?

Hi Cavey , as you know from the FTF thread, I have polycystic ovaries too and was turned away by my GP for not being fat enough to investigate for the syndrome ... hence going private for a diagnosis.

The GI diet helped me enormously and my consultant also told me that regular, high intensity exercise is helpful in balancing hormones. It enhances your body's natural ability to regulate all manner of hormones and gets rid of any excess insulin that might be knocking around.

Other things I found helped was to cut back on caffeine and alcohol . I found Agnus Castus worked extremely well for me and it kick started regular ovulation before I went on clomid.

I also found temping and OPKs did work for me and, on non-medicated cycles, both pick up the LH surge and temping then clearly indicates the shift into the luteal phase so I wouldn't rule them out until you've tried them for yourself.

Hope that's of use

Oh, sorry, forgot to say about vit B, my consultant recommended vit B6 in particular as it is the raw ingredient for progesterone (which is something PCOS ladies sometimes are a little low on). It extended my luteal phase to 13 / 14 days - much better than the 10 / 12 days I use to have!

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 :)

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

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.

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.

"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.

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

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!

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

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

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...

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...

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...

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.

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?

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

Oh, brilliant!

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!

Thanks for all the replies ladies, it's nice to know there lots of us in the same boat!

I'm due to collect my prescription today so hopefully we can get this party started!

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!

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