By Imogen Robinson
Polycystic ovary syndrome (PCOS) is a common condition affecting how a woman’s ovaries work. The three most recognisable symptoms of the condition are irregular periods, excess androgen (a male hormone, meaning women with PCOS can grow excess hair on their face and bodies), and polycystic ovaries. This means the ovaries become enlarged, and contain fluid-filled sacs which surround the eggs.
The condition is thought to affect approximately one in five women, although roughly half of these women won’t have any symptoms at all. Those that do display symptoms have reported a huge variety, including oily skin, irregular or no periods, weight gain, fatigue, mood changes, and pelvic pain, among others. In some women, PCOS can affect fertility, and make it difficult to get pregnant.
At present, there is no cure for PCOS, although there are ways of decreasing the severity of, or eliminating entirely, some of the symptoms. If not managed effectively, PCOS can lead to more serious problems, including diabetes and heart conditions. It has been shown that losing weight can reduce symptoms, and going on the pill can help regulate your menstrual cycle.
Despite being a common condition, little is known about what causes it, and little is known about PCOS in general. Many women, indeed, won’t have even heard of its existence until they are diagnosed. But what is it actually like living with the effects of PCOS? And what steps do women take to keep their symptoms under control? Below, four women share their stories.
Amanda Bootes, 24, PR Manager
I was diagnosed with PCOS when I was 19 and in hospital having tests for something else — I didn’t even know I had it. At that point I didn’t realise I had any symptoms, because doctors had put the symptoms I had, such as bloating, hair falling out, stomach cramps and night-sweats, down to stress. It wasn’t until a few years later that the real problems started.
On a general day to day basis, I don’t have any problems any more apart from the odd twinge, because I have managed to get it under control. But I do have bad attacks every few months. These will last for around two to three weeks and include painful and unexplainable bloating, bad stomach pains to the point of hospitalisation, and heavy and dark bleeding with clots. I have had three cysts burst over the last few years, which have required urgent medical attention.
Apart from the stress and strain of having to deal with constant and unwanted pain and numerous hospitalisations, I have lost countless jobs due to not being able to get out of bed or not being able to stand long enough to work. I used to be a chef and had to leave the industry due to the amount of time I needed off. I now work in PR where I can work from home if needed. I was also told, aged 19, that I might not be be able to get pregnant. At the time it didn’t bother me too much, but now I’m a bit older I am worried I may struggle.
I was on the implant for contraceptive purposes, but I have since been put on the combined pill on top of this to try and control the hormones and stop more cysts from forming and bursting. I have adopted a healthier, less-sugar, no-gluten diet and I have seen a significant improvement.
I had to have surgery once after a cyst burst, and I needed surgery a second time when another burst, but it was on Christmas Day and there were no doctors available, so my body had to reabsorb the fluid, which meant two weeks of excruciating pain. I even have a bottle of oral morphine at home to take when the episodes are extremely bad, to stop me from having to be admitted to hospital.
I’m really lucky that since the beginning, from the moment I was told i had PCOS, all doctors and nurses, from A&E to the surgical teams, to my own GPs, have been completely understanding and very helpful, offering a lot of advice and treatment.
I was diagnosed after a scan aged 16, and re-diagnosed at 21. I had another scan a few weeks ago which showed that although one of my ovaries looks OK, the other is still polycystic. The only symptom I really had was my skin. It was super oily and nothing was working in terms of tablets and creams. I did also have really irregular periods. Once I went around five months without one and then when I did have them they were awful.
Now, the main problem is still my oily skin. I have been really lucky in that I found a contraceptive pill, Rigevidon, that sorted out most of my issues. It is a medium strength pill and seems to work quite well, but I’ve tried about three or four others in the past that have been pretty horrendous. The only other one that was OK was Dianette, which is the standard PCOS pill. I occasionally get quite weird painful cramping in that area and I do feel like my weight has crept up a bit and I just can’t lose it, but apart from that it has been quite manageable.
I would say the biggest way in that PCOS has affected my life would be the fact that for now I am stuck on the pill to control my symptoms. At the moment I think it would probably be better for me not to be on the pill because I think my hormones are seriously out of whack and it would be good to give myself a break, but I worry the bad skin and irregular periods will come back.
Another symptom that I guess I haven’t yet technically suffered with, but is a concern, is infertility. It’s not something I have ever really given too much thought to, but as I am getting a bit older, I am starting to feel that I should start thinking about my options sooner rather than later.
It took a really long time to get a diagnosis and there isn’t really much support available unless you are in the stage where it’s causing infertility. I was 16 when I was first diagnosed (I’ve heard they no longer diagnose you this young) and it’s quite scary to be told then that you may have trouble conceiving later in life. Also I wasn’t told about alternative options to the pill, such as changing my diet, and I was left on Dianette for a ridiculously long time, which is not good for you.
Anna, 45, Marketing Director
When I was 17 I was hospitalised and had emergency surgery for a ruptured ovarian cyst, and further investigation revealed I had PCOS. When I was younger I didn’t realise that my symptoms were a sign of something more serious and not just caused by puberty and hormonal changes. But in hindsight, I had very clear PCOS symptoms: irregular periods (once every three to six months on average), and inexplicable weight gain that was impossible to shed. I kept ballooning despite not changing my diet or exercise habits at all.
After I was first diagnosed I was put on the pill to control the symptoms and that worked for a while, but then at 23 I developed a pulmonary embolism, so had to stop. For many years it wasn’t treated at all as I moved countries and doctors didn’t take me seriously. Although in my native Finland the doctors were great, after I moved to the UK it took me the best part of 10 years for doctors to believe my diagnosis and often I found them just blaming my weight for all my symptoms without investigating further. I was prescribed diet pills, instead of being given an ultrasound to confirm the diagnosis. I started to suffer from hair loss and I found it impossible to lose weight, even with a low fat diet and plenty of exercise.
In my early 30s I worked with a nutritionist and changed my diet, cutting down on dairy, sugar and processed food, adding pulses and vegetables, and that had a very positive effect. My cycle became more regular, my weight stabilised and eventually I managed to get pregnant without any medical help (after four years). Nowadays my PCOS is well under control and I don’t really have any symptoms. Since childbirth the situation has changed, my cycle is like clockwork and even my hair is stronger and thicker than it has been in years.
Irene, 25, Social Media Officer
When I was around 17 my periods starting getting very irregular. The doctor didn’t pay much attention and because I had become sexually active I started to take the contraceptive pill, which meant my periods became regular again. However, after a few years, when I was 22, I decided to come off the pill.
As soon as I did so, I started to have quite bad acne and my periods became more and more infrequent, up to the point where I didn’t have a period for nine months. After going to the doctor several times, they finally decided to order a blood test, which showed that my testosterone levels were quite high. The doctor interpreted those results as PCOS.
When I was experiencing irregular periods I found it quite distressing, as I worried all the time that I was pregnant, or that there was something wrong with me. PCOS also made me develop acne, which is obviously not very pleasant. With the contraceptive pill I no longer have those problems, but I have to deal with side effects of the pill, which include migraines and decreased sex drive. I also worry about not being able to get pregnant when the time comes.
I had to change contraceptive pill several times until I found one with the least unwanted side effects, and I have now been told I should take the combined pill for the rest of my reproductive life to keep PCOS under control.
While doctors have always been very kind to me, it did take a lot of visits until I was diagnosed. Everyone seemed to think I was pregnant, even though I told them I was using protection: I was asked to do a lot of pregnancy tests. I was also told I couldn’t have PCOS because I was thin. And I was never offered an ultrasound scan — my diagnosis was made based on my blood test results and my symptoms alone.