Search PCOS experiences

I was diagnosed when I went to University in my second year. I had had symptoms since I was 15. My family assumed I was pregnant when my periods would not show up for months. It feels awful to be honest, I envy women who do not suffer with PCOS.

I was diagnosed with PCOS after coming off the combined pill (Gedarel) which I had been on for roughly 3 years. I came off it in August 2023 and had not had a period by Christmas, which was when I contacted the GP because I felt that something wasn't quite right. I knew it would take a while for my periods to regulate again after coming off the pill (I didn't have irregular periods before going on the pill) but something wasn't right. The GP did blood tests which flagged up elevated testosterone levels and then she did a TV ultrasound which showed that I had multiple ovarian cysts (this was not picked up on a regular ultrasound which had been done the previous year). She diagnosed PCOS there and then on account of my high testosterone levels but referred me to a gynaecologist. I saw the consultant today for the first time - he wasn't very helpful at all and didn't seem to have a clue about my medical history but he has referred me to an endocrinologist and has requested a hormone blood panel to be done on day 2 or 3 of my next period (I assume this is to get a definitive diagnosis). I was quite surprised to learn that I had PCOS as I never thought I fitted the symptoms. I would have excessive hair growth but have had 10 rounds of laser for my bikini and underarms which has helped a lot, but I do have significant hair growth on my lower belly, lower back, arms and thighs which are apparently predominantly male areas of hair growth. I also experience frequent bloating and have lower belly fat which I'm quite self conscious about as I am quite petite and slim everywhere else.

I feel really confused about how much this will impact my fertility or not.

I was diagnosed after being to the doctors a couple of times over the years due to hirsutism since my late teens. I was originally told it wasn't PCOS and then went back to the doctor when I was about 22/23 as I was struggling to regulate my weight and was experiencing excessive male patterned hair growth. At the time they finally did diagnosed me with PCOS but said it was 'partial' as I didn't have enough symptoms - my symptoms were mostly hirsutism and weight gain, but I had regular periods. I find it incredibly difficult to live with the excess hair growth and have to keep on top of it on almost a daily basis & it has impacted my self confidence. Similarly experiencing difficulties maintaining my weight has been a struggle over the past few years - I've tried low carb diets to manage insulin resistance but it's been a balancing game of this and not falling into disordered eating.

Found out I had PCOS after a routine appointment about my injection contraception as I’d been bleeding the entire time and they were concerned. Was advised that my symptoms were all PCOS related and I’d likely never had a ‘regular’ real period in the last year I had been transitioning between the pill to the injection as my cycle was ranging from 19 days up to 35. I had been given advice on the excessive weight I’d started rapidly gaining too along with the facial hair I’ve struggled with since I was a teenager. Unfortunately my symptoms have only worsened and I have become pre-diabetic too.

I was diagnosed by my dr at 16. The hardest physical thing for me is probably the hair growth and weight. I have to be very strict with my eating and exercise. I’ve found i have to limit calories right down to under 1,500 and exercise with strength based activities to keep my weight maintained. The hair is a constant battle but i recently found sugaring and it’s much more effective for me than waxing

I was diagnosed late as I started having heavy and irregular periods at 11 and was put on the pill without any real conversation. I had terrible acne and fatigue until I was 17 with multiple pcos symptoms but my old doctor refused to test me as I didn't have diabetes,wasn't overweight and had good blood pressure. Luckily my family doctor had experience with pcos and got me an internal scan that showed pcos instantly. I've managed my symptoms for years through diet and exercise. Since I got married 2 years ago after 18 years on the pill, I have undertaken fertility tests and although discouraged from coming off the pill after being told I'd need internal scrapings etc and petrifying me (again male gp). I made the decision to come off the pill 12 weeks ago and although i can't say it was the best decision yet but I do feel more in control of my body and the choices I'm making. I wish there was more funding and understanding of pcos because it isn't one size fits all and simply putting girls on the pill from young ages without actually informing them of their choices can be extremely harmful to their mental health and self worth later on. I think women should be able to feel more empowered about their medical choices and it shouldn't be a taboo

Was not told much when diagnosed at all. GP just told me to come back when looking to get pregnant. Took years for me to identify the mental health side of the symptoms. We need more information about this.

- gained a lot of weight - went to gynea who did an ultrasound and saw the cysts - struggled to lose any weight over the past year - high cortisol - inflammation - need to be careful with inflammatory foods

I was diagnosed after coming off the pill at age 21 after being on the pill since I was 16. When I came off the pill my periods didn’t come back and lots of excess body hair grew. I was diagnosed with PCOS and put back on the hormonal contraceptive pill. In 2021 I decided I wanted to be hormone free so against advice I came off the hormonal pill. It took me a year before my periods came back and I had really bad acne during this time. At first they weren’t regular but they have got more and more regular as the years have gone on to about every 4-6 weeks. I now have the copper coil and feel much happier now that I don’t have hormones in my body. I do experience anxiety but I’m not sure if this is a result of my PCOS. Other symptoms I have experienced are acne, for which I went to a dermatologist and they gave me products which have pretty much cleared my skin. I do also have some excess body hair which has definitely made me feel self conscious. I find waxing to be the best method of hair removal. I’m currently getting laser hair removal which is helping! Sending hope to all those with PCOS!