Any PCOS experts around?

[neolara]

I was diagnosed with PCOS as a teenager nearly 25 years ago. At the time PCOS wasn't well known and it was very difficult to get information about it. I think medical procols were very different then. I had very typical symptoms (bad skin, chaotic periods, excess hair, overweight etc) and I was diagnosed after blood tests by consultants in a London hospital. However, they didn't do an ultra-sound to confirm. My treatment was reviewed at the hospital for about 5 years, by which point they had put me on the pill and told me to come back when I wanted to get pregnant.

Some 15 years later I finally reached this point and I came off the pill, which I'd been taking all that time. My periods were not completely regular, anything from 21 to 35 days but I had no difficulty conceiving once I discovered ovulation kits. However, as part of treatment for recurrent miscarriage, my ovaries were scanned and were shown to be completely normal - no cysts at all. When I asked the consultant (very senior obs and gyny guy) about this, he said that I had simply outgrown my PCOS. I'd never heard of this. Has anyone else?

I've been trying to make sense of this explanation. I wondered whether there were no cysts because as a teenager my body had never really properly got going in terms of shooting out eggs. I don't think I ever had a regular period as a teenager. My cycle was completely chaotic e.g.bleed for 2 weeks, spot for 5 weeks, nothing for weeks etc. Then I was put on the pill and this effectively stopped ovulation. And then in the couple of years before coming off the pill I got really ridiculously fit (ran a marathon) and I always wondered if this "re-set" my hormones to be more normal. Does this sound likely, or completely bonkers? Any thoughts would be very much appreciated.

Disclaimer: absolutely not an expert, but I too was diagnosed in my teens (18 years ago) after blood tests and a scan. I was told they really couldn't do much- my GP said on the basis of the results, he doubted I'd ever conceive without help. He could put me on the pill to give my ovaries a break, but didn't know whether it would do any good or not. So I was left with no real treatment or prognosis, but I didn't chase it up at the time.

When I met DH and we knew we wanted to start a family, I went to see a different GP, who told me that it was possible it could have got better on its own, but that she basically wouldn't be prepared to commit funds to investigating until we were actively TTC. She mentioned that ultrasound scans have been discredited as a way of diagnosing PCOS and that only blood tests are reliable- I have no idea how true that is however. She looked out my old notes and agreed, on the basis of my blood tests, with what the previous GP had said about my chances of conceiving naturally, but told me to come back when we'd been TTC for about 6 months.

Anyway, I conceived naturally after only a couple of cycles. I don't know whether it has anything to do with it, but I was also pretty fit. Who knows? Was I misdiagnosed to start with, had I outgrown it, was it the running? No idea, but it'd be very interesting to read other stories.

PCOS is not a set condition, like some others. It can be affected by your hormone balance and is a recognised symptom as part of insulin resistance/ pre-diabetes (type II). Therefore it is entirely possible to minimise/get rid of it by changes in your hormone balance, diet, exercise levels, body profile etc. In fact there are books devoted to natural ways to counter PCOS via diet, exercise, hormone rebalancing etc.

here are a bunch of books about it - reversing PCOS is achievable.

Also see the websites PCOS Diva and SoulCysters. Lots of information there.

Hi neolora,

I was diagnosed with PCOS just over a decade ago after many years of scant menstrual cycle bleeding and infrequent periods. )I also had a great deal of pain as well up to and during my cycle, that was due to endometriosis which was diagnosed subsequently).

Verity is also a good and UK based website www.verity-pcos.org.uk.
Some of the US based ones are not all that helpful to my mind but they are still worth having a look at.

It sounds like your previous keep fit programme and running that marathon gave your body a good kickstart so I think your body did reset itself at that time, albeit temporarily.

There is no one therapy or treatment that will get rid of PCOS unfortunately as the cystic follicles associated with it do return: it is a condition that need careful management.

PCOS is a very individualistic disorder; what is a problem for one woman is not an issue for another. I for instance needed medical help in order to conceive and was advised against using ovulation kits due to my sky high LH levels (they would give me misleading results). Another complication (one of many) with regards to PCOS is not all women with it actually have IR (insulin resistance). The causes of PCOS are still not fully understood although treatments and research has moved on quite a bit in recent times.

With PCOS the cystic follicles associated with this condition (they are not cysts in the usual sense of the word) can actually disappear but are replaced by further cystic follicles on the ovaries. Also the polycystic ovary can appear larger than normal size (a "normal" sized ovary is about the size of a walnut). My guess is that they simply did not see some of the smallest follicles (it can require a skilled sonographer to see a polycystic ovary on an internal ultrasound).

I never had regular periods as a teen either and PCOS started with me back then. It was always there, the pill in my case masked the symptoms of the underlying problem. There is no real evidence to suggest that the pill is responsible for failure to ovulate.