Search PCOS experiences

I was diagnosed after half a year of not having a period. I went for an ultra scan confirming arrested follicles in my ovaries. I also experienced other symptoms, such as abrupt weight gain, excess hair growth in new areas, acne, hair loss alongside missed periods. As for what happened after diagnosis: I was barely given any information about PCOS and what it entails. All I was told was that there was no treatment aside from birth control, and sent away with a link to a random website with basic background information on PCOS. Since then, I've been conducting my research online, relying on PCOS communities. I found out that while there wasn't a cure or a "one size" treatment, birth control wasn't the only option - there were a lot of other medications available in combating different symptoms (such as metformin, spironolactone, etc. - albeit, these are off-brand and hard to access on the NHS). Despite this, it's still very difficult to convince your doctor to tailor a treatment plan in accordance with your needs and preferences. They'd rather stick to the simple and cheaper option (birth control), and I feel like after having done my research, I'm more knowledgeable about the condition and the options available than most doctors I've spoken to so far. It's also very disheartening that an endocrine condition is still being treated as though it's solely a reproductive one ("Come back when you want to get pregnant"). It feels so frustrating to live with these symptoms, because a lot of the time, you'll suffer without realising it and find out with experience just how many of your weird symptoms and experiences were in fact not normal, but linked to PCOS yet again. For example, if you constantly feel fatigue, you'll blame yourself for being "lazy," "unproductive," then come across a forum or article that highlights a correlation with said symptom/state and PCOS. This can apply to any range of vast symptoms you may experience with this condition. The sad reality is, doctors don't really give you a thorough breakdown, because of reductionism (it's not treated with the same level of care as any other complex condition). There have been many times I've been angered just thinking about it. I often have to pluck hairs off my chin when getting ready to go out anywhere - and I find myself envying those without the condition who're able to get ready a lot quicker without having to worry about such routines, especially in instances where I'm late because I completely forgot to check for growth and have to dedicate 10-20 minutes extra to hair removal last minute, otherwise I'll feel self-conscious. I also used to have very healthy, thick hair - alas, with PCOS, not only has it thinned immensely (I can always pull chunks of my hair out without any force) but it's also become weakened and more brittle. Maintaining my weight has been a different hell. I've always eaten less portions than my peers, and do not eat excessively. Despite this, my weight fluctuates drastically. I try to be active, make conscious decisions to walk whenever I can, etc. - yet, even after making subtle progress over the years, all the weight I've lost can easily all come flooding back in a matter of mere weeks without any change, just that my hormones aren't being agreeable during such a period. I've gained 5kg in a week despite no dietary/lifestyle changes before too, which is classified as irregular rapid weight gain. Paradoxically, doctors may simply advise you to "lose weight" to help such symptoms, which will make you want to scream. There are many other symptoms I can discuss endlessly, such as suspecting potential insulin resistance (which I've never heard about until I read about it online) which causes a lot of crashes and random sugar cravings - I'm not even sure that my GP has tested my insulin before, even though insulin resistance is one of the most common symptoms. I've had a lack of support and guidance since my diagnosis and a lot of dismissal. Without the informal, online PCOS support groups out there, I don't think I'd even know a fraction of what I do about PCOS. I also feel like the NHS doesn't want to invest in PCOS patients & overall is unwilling to provide more targeted support, let alone even taking the time to inform their patients thoroughly and accurately. Upon hearing about these experiences, a lot of people who suspect they might also have PCOS or experience correlating symptoms tend to feel anxiety. I would say that it actually truly isn't PCOS that is scary - it's the uncertainty, the feelings of hopelessness and confusion, the lack of empathetic care and treatment options. If treatment for this condition was more advanced and researched, it would be a lot less intimidating overall. That's the sad reality.

I came off the pill in Oct 2024, after being on it since I was 16. At first my periods seemed to become more regular but then started to see instances where my cycle length was 45 days then 60 days. I was diagnosed after having a scan and blood tests. The scan showed lots of follicles on one of my ovaries, but the blood test was normal (no increased androgens etc). The irregular periods are my only symptom currently, I don't have any issues with weight gain, hair growth, spots etc. I was recommended Inofolic Alpha to try and regulate my periods, so starting that to see if it makes a difference.

Doctor

I have never had regular periods. I started mine at 14- even the first one was ridiculously heavy. I had chopped-liver looking clots and didn't know if this was normal or not. I could go 3, 4, 5 months without a period and then when it came it would be like getting all my periods in one go. After not having a period for 9 months- I went to the GP. I had blood tests and an ultrasound which were inconclusive, and needed an internal ultrasound for my diagnosis. As I was only 16 I didn't feel comfortable with this. I continued to struggle with periods that were unpredictable, heavy and painful, plus acne and low moods, not knowing I had PCOS. At age 19 I reached a breaking point with my mood. Although my PMS wouldn't necessarily be marked by a period, about once a month I would feel so low that I couldn't even leave the house. After a bad experience aged 16 with the mini pill, I was very reluctant to try hormonal contraception. However, after lots of research I decided to get the hormonal coil. After getting the coil I had discomfort, so got an ultrasound just to make sure everything was in place. That's when the ultrasound technician showed me my ovaries and said she definitely thought I had PCOS. She referred me to my GP to discuss what this meant for me. The GP I saw was useless. Clearly just reading off the NHS website. He talked my ear off about fertility, which wasn't on my mind aged 19. He also told me to lose weight, then backtracked because he read the bit about disordered eating. At the time I was 68kg and 5ft9 - fully in the green on the BMI. Now aged 22, I can say getting the Mirena coil at 19 is the best decision I've ever made. I've had 2 periods since and they were very light- I fell completely freed from all my hormonal problems. For my PCOS, I have also changed my diet to be lower in carbs, higher in protien, which I think has really helped too.

When my periods began as a teenager they were extremely heavy (using pad/tampons at same time and still soaking through clothes) as a result, I began the contraceptive pill at around 13 years old. Over the years I have tried different contraceptives but around 2 years ago I decided to stop taking these. From here this is where I noticed new symptoms - my acne returned and I noticed a lot of dark facial hair and hairs on my neck/chin. My periods began getting closer together, and then stopped completely. I was diagnosed at the end of 2024 after discussing my symptom ms with a GP and having a blood test, following this i began the combined contraceptive pill - whilst this has massively helped with my acne, facial hair and regulating periods, it comes with its own other side effects, but on balance the positives outweigh the negatives for me. It’s worth noting I have since my late teens had high blood pressure which I’ve had medication for in the past, and in the past couple of years had high cholesterol levels too. I had never thought that this could be in relation to PCOS however I understand now this could be a possibility. I have always struggled with my weight, I exercise regularly but struggle to lose weight and on the occasions where I have been able to lose weight, I have found it very difficult to keep it off. To help with my symptoms and to hopefully lower my weight, I am looking at trying to eat a better balanced diet, and trying other supplements such as inositol and hormone balance tonics

I was on microgynon for about 8 years and came off it in April 2022 because I wanted to see what it was like without it and because I knew that in 3-5 years, my boyfriend and I wanted to start a family so I wanted to be ready. I read online that after 3 months, you should speak to a GP if you haven't had a bleed so I did and she told me it wasn't long enough and I'd be fine. By the end of August, nothing had happened so I went back and a male GP sent me for ultrasounds which showed polycystic ovaries and a thin endometrium. I went back to review the scans with a third GP, who didn't think we needed to do anything but dropped in that she could refer me to Gynaecology, which I pushed for. I eventually got hormone levels done and everything came back fine in January 2023 and the male gynaecologist asked if I wanted a family right now, to which I said no, and he told me he didn't think it was worth worrying about and that he could put me back on a pill to get a bleed. I said I didn't want more pills but he told me I needed to do 3 months so I did and hated it so came back off it again after the three months and didn't bleed. We then did a progesterone withdrawal test and I had a 3 day bleed and then nothing. I've been going back and forth but all they say is that my symptoms "don't add up" because my hormones are fine, my smear test is fine, my endometrium is thin and I'm not bleeding and not pregnant. They've never checked progesterone to see if I'm ovulating at all and now I'm worried because I'm getting married in February and we want to start a family so have been off all contraception, including condoms, for the last year and nothing is happening and I don't know if it will because I don't know if I'm even ovulating. It's incredibly frustrating. I eventually then saw another gynaecologist, after asking to see a female one (I explained that it was no disrespect to the male gynaecologist but I wanted a female who actually knew what it was like to menstruate and therefore may understand how it feels to lack it) and they told me I might be exercising too much (I explained I go to the gym for roughly an hour 3-5 times a week) and then they sent a letter to my GP with factual inaccuracies so I had to chase to get that redone. They have now referred me to the fertility team but they're going off hormone levels from January 2023 and from scans from about the same time which seems silly as so much can change. In the meantime, my weight is fluctuating and I seem to put weight on incredibly easily, even when I eat the same thing day in, day out and I have lowered my exercise but am now working with a PT who specialises in PCOS. I just don't really know where to turn to next, if I'm honest. I'll be 29 in May and my partner will be 33 in July and we want to start a family but I don't know how long that will take now.

Was being investigated by the NHS for chronic fatigue. After being inconclusive after over a year of investigations I got a hormone test with Superdrug which showed high levels of testosterone. I then went to an endocrinologist privately with my hormone results and hirsutism. They gave me an ultrasound and diagnosed me with PCOS. I've been treated for two months on metformin and spironolactone. Tiredness has improved... but many other symptoms remain unchanged. It feels frustrating. I feel like I am trying hard to live my life perfectly - trying to not spike my insulin, spending thousands on laser which doesn't help, endlessly exercising. One day of indulgence sets me back to zero. 3 weeks into my cycle my fatigue comes back in force. However I am hopeful that eventually I will find a way to manage.

Went from clear skin to terrible acne from age 12-28. Hairy face, boobs, bloating and problems focussing or having energy to do anything affecting job, relationship and holidays. Doctor said “yes sounds like PCOS, try being healthier” (never been obese). Eventually found Yasmin without breaks has finally fixed my skin and reduced body hair. Energy a little better but not great. 3 other women in my family have these problems + migraines.

I went to the doctors when I was 15 because of acne, excess hair and irregular periods and was put on Dianette with out any investigations. I took this for 15 years and whilst it did control the acne to some extent I wanted to come off the pill as I felt it was affecting my mental health. My symptoms then came back even worse than before. I went back to the doctors and they just said to go back on the pill unless I was trying to get pregnant. I didn’t want to keep masking my symptoms so decided to do some functional testing with a company called Future Woman as they test androgen and stress hormones as well as the usual sex hormones. I’m now awaiting my results and they will provide diet/lifestyle/supplement advice so I can hopefully get the root cause of my symptoms.

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.