Introduce yourself to the community - PCOS UK (Verity)

PCOS UK (Verity)

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Introduce yourself to the community

LuciaHU profile image

We’re excited about what you can go on to do for those women with polycystic ovary syndrome (PCOS). We hope you are too. Write something today about your experience and you’ll be starting your own online movement. And get inspiration from Nick York, another advocate in HealthUnlocked here

Great to have you here :)

HU Team

12 Replies


I'm Nikki. I've got 2 kids aged 5 and 7. I've had PCOS for simply what seems like forever. In 1999 I asked for a glucose tolerance test as I couldn't loose weight. The endo I saw was useless and wouldn't let me have the test. He told me I was fat as I ate too much. this was after living on cup a soups for a week and consuming no more than 500 cals and not loosing an ounce. On top of being constantly on a diet since I was 8 years old.

I went to study in the state the next year and the dr had no problems with testing me. I was already in the pill for excess hair and period problems. I got tested and found that my body didn't handle the sugar well. It took a lot longer to get it out of my system. This didn't mean I was diabetic as when the sugar was processed my levels were normal. I was one of the first people to be put on metformin. During the 2 months I had left in the states I suffered with extreme stomach problems as my body struggled to digest the metformin. However, my weight dropped and I lost 1 stone in 2 months and I didn't really eat any different.

When I came home the drs wouldn't prescribe until I'd seen an endo. This time I saw a very good private endo who had no problem saying yes.

I continued on metformin, and my weight being lower than it has ever been, until I got pregnant with my first child. It was stopped. I had Emily then started the cambridge diet and lost all my weight. My PCOS vanish with me being so thin. I got pregnant again. Then I had trouble loosing weight again. I lost it in cambridge diet again but it was so easy to out on. A weekend out left my 7lbs heavier and then I was strict again for a few more weeks.

I eventually went back to my dr. He asked me why I wanted to be put on metformin I'd had my kids he told me. He wouldn't put me back on it.

Role on a few more years and my mum died due to type 2 diabetes complications. I lost it and my whole body shut down in me. I ran my 3rd half marathon for diabetes uk but I was a few stone heavier than I used to be and killed my feet. My iron and b12 dropped too low and my cortisol fell to just above borderline with all the stress my body had encountered.

I got referred to an endo in London this march who put me back on metformin straight away but it's been done too late. The damage is done and I'm now a type 2 diabetic. I need to loose 5st in weight 'again'!

Lately I've been researching and found that victozia is good for controlling diabetes and PCOS, with the side effect of weight loss. I'm off to see a consultant about this but in the meantime I've asked my dr for a gastric bypass. You may think it's a bit extreme but I don't want my kids to go through what I went through with my mum (who also had PCOS)!

All I can say to you all is get the weight off. Get really skinny and stay that way and maybe PCOS won't lead to type 2 diabetes for you.

Hi all

My 16 year old daughter has been diagnosed with PSO. She is not over weight and exercises regularly. She is very upset by the hursuit ism and the mood swings which are horrendous with what we call sad and mad phases and occasionally happy manic. She has tried two different types of pill but the moods just became much much worse and now she refuses to take it again....and I don't blame her. I would say the moods and the hair are the worst issues for her but I can't help worrying when the dietician warned her of health issues down the line but blithely said that that is years in the future...correct but it is her future. Is the diabetes risk just for those who are overweight? Likewise the heart disease? We have seen the gynaecologist once for the diagnostic scan, have a dermatology referral and seen the dietician but that seems to be it. No follow up oR further support. Has anyone any experience of supplements? What about evening primrose many questions

OakTreeBlossom profile image
OakTreeBlossom in reply to FeeC

HI I've just seen your post, I know it's really late but I thought I'd respond. I was 'diagnosed' at 17 and hated all the pills they asked me to try until at 23 I said 'no more' and stayed off them for around 12 years. I loved those years and look back on them fondly for being released of the responsibility of living with PCOS. I am now 35 and have two children and have decided to go back on them. There is something about being older, something about having your own children that makes you realise you wanna stick around for as long as possible with as little pain as possible.

I wanted to address your questions directly - even if your daughter is not overweight her PCOS might mean she has a problem with sugar and a problem with retaining insulin (common symptoms) so diabetes cannot be rulled out for her in later life. During my 'time off meds' I experimented with various dietary plans to complement my PCOS. I found a low gluten and sugar diet worked wonders for managing my symptoms and have been careful to supplement whilst trialing new diets. I found the sugar diet really required me to monitor what I was eating so I made sure I supplemented with vitamins so I didn't have to watch so closely (who wants to live like that!) but the most interesting links I thought I'd mention to you was the hair and the sugar diet. I am back to the doctor all these years later because I can no longer cope with the facial hair or thining hair. The pills I'm on have yet to do anything but when I went 'no added sugar' free I noticed an immediate change. I have so much less facial hair and it's a joy. I think when I go back to my consultant in March he will tell me that managing my sugar has meant a drop in my insulin resistence and that has had a knock on effect to my testosterone levels... I've looked up the connection and there is one. Finally, I have been prescribed Vaniqua cream for my facial hair and that too has been a blessing, with the two plans of attack I no longer consider facial hair an issue.

The other worry for me is/was Osteoporosis. If your daughter has regular periods that's fine but if she has less than 3 or 4 a year; you really need to research this worry about this dibilitating bone condition.

I hope this post comes too late because you and your daughter have found things that work for her xxxxx

I was diagnosed with 'symptoms consistent with PCOS' at 17 but that didn't mean too much to me then, thinking it was fun to have no periods (lucky me!) and no chance of getting pregnant 'accidentally'. Being mediterranean I've always been hairy, once I hit puberty I was always one of the heavier girls too. During my A Levels I had chronic stomach pain that put me in hospital twice but that was only ever put down to stress by Drs.

At 25 I fell pregnant (without a period!) unexpectedly (but after a lot of weight loss) and went on to want another child badly. At 29 I was officially diagnosed with PCOS and we went through various infertility procedures (including a prescription for Metformin) before I changed my diet (went Gluten Free) and lost a lot of weight and fell pregnant naturally (after my first period in 10 years!).

At 34 I found I could no longer control my low moods (or weight, even with the GF diet) and was diagnosed with 'symptoms consistent with depression' (again not actually diagnosing me with depression), at which time I began to explore the idea of managing my moods by managing my hormones.

At 35 I have gone back on Metformin, begun taking progestrone-only pills and treating my facial hair with prescribed creams (this prescription I had to fight for and means I have had to say no to more babies). I have found this has no effect on my moods just yet (and I'm open to the idea that it might not) but it's early days.

I feel embarrassed waiting so long to address the fact that I haven't had enough periods to guard against osteoporosis or cervical cancer but promise to treat my body better from now on!

Hi, I'm Gemma and have a little girl who is 4 next month. She is gorgeous and I am so blessed to have her. I was diagnosed with POS when is was 18 and I'm now 32, my little girl wasn't planned however for nearly a year we have been trying to have another baby. My cysts have got worse along with my dark hairs and I did think that I was started to see a regular pattern with my periods however that hasn't happened. I'm just really frustrated and low, it doesn't help when people say "at least you have one, some people don't have any" which I know is totally true and must be heart breaking. However I just really would like a second and I know trying to hard and it playing on my mind won't help. Just feel like I needed to vent 😞

I think you should be able to get ovarian drilling? And fertility treatment? Xx

Hi ladies

Can anyone help me please. I am 25, was diagnosed at 15. Have been reviewed by many consultants and drs, due to severity of my hormone levels. I was offered the chance to have ovarian drilling 3 years ago due to the extent of my condition. I have now been blessed with a beautiful baby girl! Whose 2 now. However since having her, I have been discharged from all the consultants etc. And at my request from gp, was allowed to go back on medication. Yet my symptoms of weight gain, acne and severe hair growth (I nearly have a full in beard) does anyone have any advice. I am taking metformin and spironolactone and a long term antibiotic at this current time. Also citlapram from depression as I used to be so confident fun and loved to socialise, now I am too ashamed. I previously tried vanque cream, dinette and yasmin. No joy. Please any advice would be massively appreciated :)

Congratulations on the birth of your baby girl!! Are you on the pill? I found dianette really helped my acne. But I’m afraid I’m still searching for a way to get rid of face and body hair. I hope you find a solution xx

Sorry I just re read and saw you’ve tried dianette. I’m sorry I’m not sure, are you allowed to have the drilling again? X

Hello posted my newbie post in the wrong bit. Sorry about that. I'm Natasha 39 from Swansea. I was diagnosed in 2010.

Hi there! I was diagnosed last year but I basically have always known I had it, as I had acne, body hair, and now hair loss and my mum had fertility problems.

I am currently most upset about hair loss. I’m hoping to find a treatment that works and then campaign to improve gp services for women with pcos after being robbed off for years and treated terribly by gps who don’t seem to know anything about the condition and only seem to want to help you get pregnant.

Don’t they know we’d also like a full head of hair?

Stay tuned to find out ways you can help make your area better at diagnosing, treating and referring pcos sufferers to a specialist for proper treatment.

Thanks all!

I am natasha from south Wales diagnosed with pcos in March 2010

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