PCOS: Your stories

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  • Around 1 in 10 women have polycystic ovary syndrome (PCOS) – which can cause lots of unpleasant symptoms – including fertility problems, acne and stomach pains.

    But when we asked you about your stories of PCOS, some really positive ones came through – like Suzanne who had a son before she even knew she had PCOS, and Emily who urges other sufferers: ‘Try not to get overwhelmed, understand that you are different and this is different for you and be positive!’

    And we were particularly impressed by Liz, who answered Lisa’s questions on the tests for PCOS – scroll down to the bottom to read Lisa’s question and Liz’s answer.

    Read through these women’s stories of living with polycystic ovary syndrome – and add your own stories in the comments box at the bottom! We’d love to hear from you if you have any tips, stories or advice to share!

    ‘The doctors were astonished!’

    I found out I have PCOS last year after the hospital investigated pain that I was having in my stomach area. They believe looking back over my history I probably have had it since the age of 15/16. Whilst sat in the doctors office they told me it was very unlikely that I could go on to have children … the doctor was astonished when she looked at my notes again to find that I had a son of 2 years old. All of you out there don’t give up hope – it can happen.

    ‘Stay positive’

    When I found out I had PCOS about 18 months ago the first thing I did was go on the internet and join forums full of people struggling with the symptoms and having trouble getting pregnant. I was overwhelmed by a big black cloud thinking that I would never have children, would turn ugly, spotty and hairy and would develop serious health conditions in the future. PCOS is a serious condition but my advice to anyone newly diagnosed and worried about the condition is that just because some people struggle with certain things it does not mean you will. Every case is different and I started to realise how common this condition actually is, and I mean REALLY common. Beautiful women with big families sometimes have it, it does not automatically make you an infertile hideous beast. Another point to remember that the online community struggling with the condition does not represent the whole PCOS community and that there are millions of women leading perfectly normal lives. I managed to lose nearly three stone, regulated my periods and am now four months pregnant and conceived naturally. I know some women aren’t as lucky as me but there is nothing to say you wont be. Try not to get overwhelmed, understand that you are different and this is different for you and be positive! Read success stories instead of problem pages. For anyone finding out while they are still at school it is probably likely that at least one of your class mates will develop PCOS too. Since I got pregnant I’ve know know 4 more people with PCOS that live in my town and 3 of them are pregnant! Good luck to you all :o) stay positive!

    ‘You are not alone’

    I had to challenge my doctors who originally told me to lose weight and excercise. PCOS is a chronic condition and until you have the symptoms under control keep going to your doctor. I can recommend a book by Colette Harris which has been my bible. It is called PCOS diet book and is very informative. Don’t be afraid to go back in and discuss with your doctor and ask for a referral to an Endocrine specialist. There are 2 really good websites for PCOS one is called Verity the other is called soulcysters – google them and start surfing and making contacts. You are not alone and this condition is not something that your GP can be an expert in so ask for a referral to someone who is and who can help. Hope this helps!!

    Over to you…

    Hi, I’m 17 and feel really embarrassed about this whole PCOS thing. I reckon I have it as I fit the symptoms. I’m embarrassed about going to the doc’s about it, and some way a tad scared. What are the tests that are done to determine whether we have this?? And also, I’ve been consistently overweight, something that is so annoying, But I’ve been dieting and have had some results… Is it just harder for us (PCOS sufferers) to loose the weight or impossible?? Love a response as this is something that is kinda upsetting me the more i think about it, and i try to put it at the back of my mind. None of my family or friends know of this, and I don’t know how to approach the whole situation!

    Hi Lisa. I fully understand that you are anxious about being diagnosed with polycystic syndrome. There is honestly nothing to worry about. No extreme tests. As you are still young you should try to get it sorted out as you may have problems in conceiving later in life. If you are able to nip it in the bud now so to speak them you will be fully prepared. I wasn’t diagnosed until I was in my late 20’s now 42. My husband and I sat down and worked it out I probably had this since I was 13 years old when I started my periods or lack of them. I so wish it was more understandable then as it is today. I was very sporty and still go to the gym and lead a very active life having 2 children to look after plus a menagerie of animals, husband, yet I am classed as very over weight. I have had tremendous problems to lose the weight. Lack of will power doesn’t help. I also have just read that PCOS sufferers also suffer depression which is something I am prone to as well. I am also in the process of watching my daughters in case they should have the same problems as me with weight. My eldest daughter is 13 years old is very very sporty but even she has a lot of muscle which could potentially turn to fat should she stop the sport. I wouldn’t hesitate for my girls to have a test early to diagnose if they have it. As it will make their lives much easier in the long run as I wouldn’t want them to be restricted in doing what they want in life due to being over weight. Or even the potential health implications or potential fertility problems. Lisa, I would recommend you definitely go to the GP and get it diagnosed sooner that later. I promise it is so straight forward. Good luck!