Search PCOS experiences

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!

I started suspecting I had PCOS about three months after stopping the combined pill I was on (Eloine). I had been on the pill for over five years and previous to that, my periods were regular. Around three to four months after stopping it, my cycle started getting increasingly irregular (ranging from 31 to 52 days) and my skin started breaking out badly (again, something I had never had any big issues with). Over six months in, I’m suffering from fairly severe acne and facial hair growth. I went to my GP over two months ago - they first dismissed my concerns as I’m particular slender and they said my irregular period was due to my weight. After pushing for more tests, they book me in for a pelvic ultrasound which showed bilateral ovarian cysts. I’m now waiting to get my period to do early days (1-3) blood tests to confirm the diagnosis. My main suggestion is to trust your instincts and really push for your GP to do the extra tests - unfortunately PCOS is as common as it is disregarded, but it can have such a massive impact on your life (I’m trying for a baby and obviously was distraught at the news this would now be difficult).

I was diagnosed with pcos when I had been struggling to conceive for over a year. I had been to the gp and after further investigations and a hycosy it was discovered I had pcos. It has impacted me with trying to conceive and it has taken 6 fialed rounds of assisted ovulation and 4+ years to finally fall pregnant. My main symptoms were the irregular periods, this is something that is quite difficult to live with as it not only effects ttc but also your mood and hormones.

My symptoms started at around 13 years of age, I went to my doctor with my mum to talk about my periods not levelling out and not being regular. The doctor was a guy and offered contraception. He then told me it was just my hormones that needed to be levelled out. So I took this information And went with it and from there until around 20 years of age my periods were pretty much non-existent and were only regular when I was taking the combined pill. I then started getting migraines and ended up in the hospital due to a suspected stroke, they said it would be my combined pill that had caused the stroke like symptoms. Then realised that I needed to go on some sort of contraception due to being sexually active but knew that I couldn’t go onto the combined pill as I was told my BMI was over 35. So I took the progesterone only pill and that completely stopped my periods but actually also caused some spotting as well. I thought to myself, do I really need this contraception? Because I have had unprotected sex and not been pregnant. I then went back to my GP and told them about all of my symptoms, they tested for all conditions like a sexually transmitted infection or disease to which I was completely clear for . They then referred me to a specialist gynaecology who then did an internal and external ultrasound on my vaginal area which confirmed polycystic ovaries. They said that I needed to go back to my GP to get my bloods done again to rule out PCOS. The GP told me that my bloods suggested that I have polycystic ovarian syndrome. They then referred me to another specialist gynaecologist who Then saw me and told me there was nothing they could do and suggested I go onto birth control. At this point I asked what birth control as I have tried absolutely everything. He said that PCOS cannot be cured but can only be managed. So I said yes, I understand that, but what can I do to manage this. He told me that my GP , should have been managing this in the first place. So went to my GP and told them what they had recommended and they ended up prescribing me hormone replacement therapy which they told me is a very very low-dose therapy and is not considered as contraception due to the incredibly low-dose. From there, I have just learnt to manage everything on my own. No psychological therapies to help with the process of actually receiving the diagnosis of PCOS, instead I had to invest with my own money and take all of the supplements I can think of, I now have extremely chronic fatigue every day and periods every three months. I’ve got some acne around my chin area but apart from that, I just live my life and try to eat as healthily as possible combining that with going to the gym every day.

I was diagnosed following a blood test and internal ultra sound found cysts and hormonal imbalance. I am not overweight but decided to try a low GI diet which really helped to get my period back on track and I conceived quickly after. Stress and poor diet tend to make things worse.

I was diagnosed with pcos in 2015 after my second miscarriage. At that time I thought finally someone’s going to help me. How wrong was I! After being diagnosed I was offered metformin which unfortunately my body couldn’t cope with. Over the years of asking for me from gps and weight loss clinic I am still no better off. Pcos has made such a negative impact on my Life, my mental health is rock bottom, my anxiety is sky high. I do not leave my house without my husband. Fearing anyone who unexpectedly knocks on my door. Doctors do not do enough for pcos, it isn’t talked about enough. There isn’t enough research to help the 1 in 10 women who have pcos.

Medically gaslit until I went private, my first gynae and endo consultant appointments fully supported me and were convinced I had PCOS (even before confirming on a scan). Tests were all coming back inconclusive beforehand (aside from blood pressure which was getting worse), my consultants noted that a ‘full blood panel’ on the NHS isn’t really a full blood panel. Metformin didn’t work on me and I was gaining weight despite lifting weights and eating healthily, it made me suicidal. Since switching to ozempic (low dose), my body finally feels like it is mine again, and the weekly has helped my insulin levels massively. I am privileged to access this though, as it’s private only and roughly £100 a month from Boots (other chemists charge a lot more). It can also be tricky to procure if you don’t live in London. For all the health and peace of mind it has brought me, I feel like it’s worth the expense. This, along with Yasmin, has honest saved my life. Things aren’t perfect but life is a lot more bearable and manageable now. I’ve suspected endometriosis but do not wish to go through the surgery to diagnose, at the moment, so am leaving that for the time being. With Yasmin stopping my periods, the excruciating pain and heavy bleeding hasn’t really been an issue anymore.

I was diagnosed after experiencing some irregular periods and sometimes periods that would last for almost 2months. Living with PCOS for 3-5 years has been challenging, especially coping with heavy bleeding and clotting. There have been instances where I've had to spend up to 12 hours in the emergency room seeking relief from the symptoms. These experiences have been physically and emotionally draining, impacting my daily life significantly. Managing PCOS requires patience, resilience, and support from healthcare professionals and loved ones.