New to Verity! NOT overweight with PCOS, needing advice

General discussion area. Just been diagnosed? Need to share your story and get some peer support?

Moderators: thebuzz, Northfifer, Sammi, Hols969, DawnyB, purplestar, loachy, Mrs Wilko, Lutzomyia

New to Verity! NOT overweight with PCOS, needing advice

Postby wheniwasbed » Wed Aug 19, 2015 3:23 pm

Hi everyone! :) I have been having symptoms of PCOS since I was about 15/16, diagnosed a couple of years after that and I'm 24 now.

I'm starting to realise that I may not be helping my situation so I wondered if anyone could give any advice - I have read a lot on here before registering but thought I'd explain my story.
My main symptoms - excess hair on chin, lower stomach and rear (my arms are worse than is 'normal' too and my leg hair has always been coarse), and very irregular periods before being put on Levest. I read a lot about PCOS being the cause or a bad contribution to weight gain/being overweight, but I am 5'2 and have hovered around 7 stone for all my adult life pretty much. The last blood tests (quite a while ago now admittedly) I had indicated that I didn't have high testosterone levels for someone with pcos - is this common considering the hair?

My main questions - does anyone relate to being slim and having PCOS? I am unsure of how much to worry about what I eat etc, obviously I know not to be unhealthy but doctors are of course useless to give information unless there's something that needs treating and it's too late. My grandmother was type 2 diabetic so this comes into my head a lot.
Also, from reading on here about different pills, Levest seems to be not a good option at all :( I have noticed a slight worsening in facial hair after being on for about a year now. I'm willing to change pills but of course I'm afraid of the side effects and I really don't want to put myself in a situation where I'm putting on excess weight and making everything worse! Any advice to my situation would be great, sorry if this waffles a bit!
wheniwasbed
 
Posts: 1
Joined: Wed Aug 19, 2015 3:07 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby Rain005 » Thu Aug 27, 2015 10:04 pm

Hey. I went to the docs today and basically got shoved aside. I have the hair problems you describe from 18-31 (present) regular periods. 5ft1. 12 stone. I still have no diagnosis. I also had acne for over a decade I had to ask for expensive treatment for that. Doctors are useless so it seems. The doc said the hair is normal and couldn't quite believe why I was sitting in front of her. On a good note the hair hasn't got any worse and I don't think it will.
Rain005
 
Posts: 4
Joined: Tue Aug 18, 2015 7:21 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby enchantedchaos » Wed Sep 02, 2015 1:52 pm

Hi, I can't offer any advice I'm afraid... I was only diagnosed a few months ago and decided today that I really need to do some research (and came across this website). But I can certainly relate.

I too have the same excess hair problems you mention... I always have done but not really thought much about it. I also have quite oily skin. I am however not overweight so although in the past I'd heard of PCOS I'd dismissed it. I'm about 5ft8 and weight around 11st

About this time last year I came off the pill as I'd been getting a lot of headaches and a doctor suggested to try to see if that was the cause. Anyway, a long story short, having been on the pill for many years (between 18-30) I decided I'd take a longer break. My first couple of periods were normal, then they just stopped.

Three pregnancy tests later and an hysterical appointment with a new doctor at my surgery and I was being sent for blood tests and ultrasounds.

I have to say it's really refreshing to find a website that isn't just about fertility problems!
enchantedchaos
 
Posts: 3
Joined: Wed Sep 02, 2015 1:41 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby wrigglepup » Thu Sep 03, 2015 7:02 pm

Hello, not every one puts on weight with pcos, so that's a bonus, my hairy chin didn't start appearing till late teens although I was conscious of my sudden weight gain in early teens along with periods that were all over the place.
Don't know what my testosterone is but I think its linked with insulin, do you eat healthy? I try to avoid sugar and carbs. I worry about the diabetes too, spose we can only take special care of ourselves, perhaps being slim may help ward it off, exercisesing is good for using the insulin up, or so I have read. X
wrigglepup
 
Posts: 72
Joined: Sat Oct 04, 2014 4:07 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby blinky000 » Mon Oct 19, 2015 7:18 pm

I've got lean PCOS as well. The doctors have been pretty useless with me too. I was told to just "Google it" when I was first diagnosed. I also worry about diabetes since I've always battled hypoglycaemia but I've wondered if, since the weight issue is in our favour, does this lower our risk? Would be good to hear from some other lean cysters.
blinky000
 
Posts: 1
Joined: Thu Oct 15, 2015 9:19 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby Sw236 » Tue Jan 05, 2016 10:41 pm

I was diagnosed a couple of months ago. I'm 26 and 9 stone 9, 5ft 4. It's really hard to find advice for PCOS sufferers that isn't mainly about weight issues or insulin resistance (which I also don't have).

I started my period when I was 13, it was always heavy, painful and irregular. And I had bad acne from when I was 11. When I was 18 I tried 3 different contraceptive pills and some different treatments for the acne. Ended up being on Yasmin and Tetracycline from then until last year.

Then I was having mood issues, low libido, and still had painful heavy periods, though regular while on pill. I realised that it had been 8 years since I knew my natural hormonal state so stopped the Yasmin (had already stopped the Tetracycline which had no positive or negative effects) and got the non hormonal coil instead. Rather than improve things everything got worse- periods heavier, more painful with worse headaches and nausea, mood got much worse, and I was completely uninterested in sex. My acne is worse than in years.

After months of tests and countless visits to the GP I got the diagnosis following hormone tests. The doctor prescribed dianette and tetracycline- saying both should be temporary. But I've tried both before and they work to a limited degree while on them but have no lasting effect. Although, at the moment my mood etc is much better. Also Im concerned that I only feel normal on the pill but would like to think about trying to conceive within a couple of years. I'd like to discuss alternatives but always feel rushed out of the GP.

I'm seeing a new doctor next week. Also starting a new diet and exercise regime this week so see if it helps with other symptoms. It's really frustrating, I hope my new doctor is more responsive and maybe refers me to a specialist.
Sw236
 
Posts: 2
Joined: Tue Jan 05, 2016 10:19 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby Hols969 » Wed Jan 06, 2016 7:24 am

Being on the combined pill increases your chances of getting pregnant naturally as your body is less pcos as the pill masks the symptom so don't come off it till you want to try. Interesting article in the Daily Mail yesterday about the myths about the pill as so much is old wives tales. I take 2-3 months on the trot which reduces the symptoms further (struggle with 3 as keep spotting), but it does make life easier. I have been on the pill on and off for 25 years and it's the only way to keep things at bay so I feel more normal!

Not everyone struggles to conceive but as you have a known fertility issue you will get referred after 6 months.

Yasmin is a good alternative to diabetes btw. Ask to see an endocrinologist as pcos is their area. Good luck
Unless stated, my views do not represent the official views, position or standing of Verity
Hols969
Verity Admin
 
Posts: 11345
Joined: Fri Nov 19, 2004 5:19 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby Sw236 » Fri Jan 08, 2016 8:02 pm

Thanks :) It is definitely interesting and there is a lot of misinformation. I'm trying to get much more informed now. I'm not convinced that the pill works for me long term though, because I noticed the symptoms develop while on the pill last time. It seems coming off and back on has kickstarted things but had to get much worse before better. All trial and error I suppose.
Sw236
 
Posts: 2
Joined: Tue Jan 05, 2016 10:19 pm

Re: New to Verity! NOT overweight with PCOS, needing advice

Postby phonixgirl » Fri Feb 19, 2016 6:30 pm

Hey

I've got lean PCOS and struggled for years to get a diagnosis (it didn't help that I have regular periods and no excess body hair either). We are ttc and I was put on metformin. I did actually lose more weight on it - I realised that all my fat went to my thighs!

I went to the doctor first of all about my pre-menstrual spotting (which has started again since a failed IVF cycle) when I bled for a full month. They told me it could be another period or breakthrough bleeding and just shrugged it off. Even when I was referred to the fertility clinic and they did the scan (which showed cysts), I was told I had PCO but couldn't have the syndrome as I wasn't overweight. Six months later a consultant looked past my weight and told me I have typical PCOS! Hmmm...

I do wonder sometimes if it's easier to sort out if you're overweight and have no periods, rather than being thin with messed up ones like me.
phonixgirl
 
Posts: 4
Joined: Wed Feb 17, 2016 7:09 pm


Return to Verity Cafe

Who is online

Users browsing this forum: No registered users and 4 guests