Living peacefully with PCOS

According to statistics from the NHS, as many as 1 in 5 women in the UK are affected by polycystic ovarian syndrome (PCOS). This means roughly 6.4 million women in Britain suffer from PCOS, of these only a fraction is diagnosed successfully.

To be diagnosed with PCOS a woman has to show two out of three of the main defining features of the condition. These are:

1. Irregular periods; often meaning you are menstruating fewer than four times a year
2. Excess androgen; high levels of hormones which can physically manifest as symptoms such as excess facial or body hair (hirsutism)
3. Polycystic ovaries; enlarged ovaries with multiple follicles making it difficult to release eggs for ovulation

If like me, you meet all of these criteria, you’ll understand this disorder intimately. It is an increasingly steep uphill battle. With no cure, living with PCOS often means managing the symptoms and trying to make peace with this life-long disease.

Pre-diagnosis struggles

Before I was diagnosed with PCOS, my life was riddled with insecurity and uncertainty. As far as I knew, I was the only girl not to have her period by the age of 15. I tried to convince myself it was okay to develop late, but hirsutism destroyed my confidence and self-esteem. As a result, I became increasingly desperate to be normal.

After visiting my doctor, I was prescribed the oral contraceptive pill. Begging for help to manage my non-existent periods, my sympathetic GP obliged and I kick-started my menstrual cycle using synthetic hormones. It was unclear how taking the pill was going to affect my body and it wasn’t until later that I understood I was going to struggle to menstruate naturally for years to come.

The pill put my physical development into overdrive and I was rewarded with a seemingly regular menstrual cycle. Finally, I could join the girls cradling their stomachs at the edge of the swimming pool, excuse my mood swings, and claim fatigue for late homework. I was part of the club. What I didn’t anticipate were the debilitating migraines that would leave me in bed, nauseous and unable to move, nor the unpredictable emotional highs and lows.

Finally, I could join the girls cradling their stomachs at the edge of the swimming pool, excuse my mood swings, and claim fatigue for late homework. I was part of the club. 

The pill is a revolutionary thing, but it has only been around since the 1950s, and even then, it has only been used in the UK since 1961. We still have no idea what the long-term impact of playing with the delicately balanced hormones of the female body is. This is even more apparent in regards to conditions such as PCOS, where women are lulled into a false sense of security by an artificial cycle. 

Using the pill masks the condition, lending itself to a delay in diagnosis and the development of a lifestyle appropriate to managing PCOS and its symptoms.

Aside from the main criteria to diagnose PCOS, there are many indicators similar to PMS and PMDD symptoms. From acne, oily skin and mood swings to weight gain and intense cramps, you’d be forgiven for thinking these are merely signs of puberty. Couple these symptoms with male patterned baldness, excess facial and body hair, and a lack of periods, and it becomes clear there is something else going on.

Diagnosis is only the first step

A few months after I went to university, I was on my fourth brand of oral contraceptive and a local GP finally referred me to the gynaecologist for further investigation. After an internal ultrasound showing numerous follicles on my ovaries, I was diagnosed with PCOS. I had an answer, but I didn’t know what the diagnosis meant – aside from the likely struggle to conceive. No one explained the nuances of the condition to me. I was left in the dark about how this diagnosis would affect so many aspects of my life.

Women with PCOS are at risk of becoming insulin resistant and can develop type-2 diabetes. They are also more at risk from heart disease, high-cholesterol or endometrial cancer. Studies have also shown women with PCOS are more likely to suffer from mental health issues, including depression and anxiety, and some struggle with eating disorders. A diagnosis is the first step in the life-long management of this condition.

What comes after the diagnosis?

Educating yourself about PCOS is key to living with the condition. Since my diagnosis, I have learned a lot about the disorder and adapted to reduce my symptoms where I can. With this being said, I often find advice is obscure or unhelpful and the responsibility of treatment is ultimately left to the individual. PCOS has no cure but is manageable with lifestyle changes, including:

• Tailoring your diet to reduce insulin sensitivity
• Frequently exercising
• Stress management techniques, such as meditation
• Maintaining a regular sleep pattern
  

Finding appropriate support, either from medical or mental health practitioners makes living with and managing PCOS less daunting. 

Coming to terms with PCOS

Over the years different aspects of my condition have taken priority, but as some symptoms become more prevalent it means the condition is worse. Being unable to lose weight easily is one symptom that is particularly troublesome. I know in carrying extra weight I am at risk of developing diabetes, heart disease or cancer. As such, I have been trying to focus on making healthier, sustainable lifestyle choices to reduce my symptoms. I am slowly making peace with PCOS by introducing longer-term goals, including exercising frequently and reducing my sugar intake.

Living with PCOS can create a host of mental health issues for women, some are closely tied to body image, but one of the biggest issues they face is dealing with fertility. While being diagnosed with PCOS does not necessarily mean a woman is infertile, women suffering from the condition can struggle to conceive. This struggle can present many challenges, including putting a strain on relationships or confronting the long-term question of whether or not to pursue motherhood.

Even with prioritising my other symptoms and considering how to approach parenthood, years of shaky self-esteem have left me with an unhealthy body image. Since I was 13, I have been ashamed of having hair on my face. Over 15 years later, I feel more at peace with my facial hair, but I squirm at calling it a moustache and I balk at conversations about it. I can’t help feel like I fail at femininity when I catch sight of the slight shadow in the mirror. Counselling, frank conversations and participating in body-positive projects have been a huge part of coming to terms with my condition.

What to do if you are struggling with PCOS

Even with a positive diagnosis for PCOS, symptoms don’t immediately improve. Implementing a strict regimen of lifestyle management techniques can help minimise symptoms. However, having such a structured lifestyle is often unsustainable and it can be more damaging for women to see their symptoms resurface.

For me, being unable to sustain a lifestyle geared entirely towards managing my PCOS symptoms has meant excess weight gain, menstruating once or twice a year, painful breakouts, hair loss, and excess body hair on my face and stomach. These symptoms, in turn, have had detrimental effects on my mental health, self-esteem and relationships.

With the best will in the world, trying to manage all aspects of your life in relation to PCOS is a huge and difficult undertaking. If you are overwhelmed, speaking with your GP, fertility specialist or gynaecologist about the best strategies for living with the disorder will serve you much better than suffering in silence. Verity – the UK’s PCOS charity – have a wealth of information for sufferers and can provide a much-needed support network.

Moving forward with PCOS

What is most unsettling about living with PCOS is the disorder is hard to diagnose and difficult to manage. I spent years wondering why I was abnormal and feeling like a lesser woman because of the condition.

While I have tried my best to pay less attention to my physical symptoms and instead focus on feeding and moving my body to better manage my condition, I cannot help but wonder if I had worked with an expert to create a more cohesive lifestyle, would my quality of life have been better?

Instead, like most women living with PCOS, I am forced to find ways to live with the disorder on my own often with mixed results. I have tried overhauling my life completely and failed, but in failure, I have found strategies that work for me and my body, and have chosen to create small changes with better outcomes. I exercise two or three times a week, eat a more balanced diet, employ stress management techniques like yoga and meditation, and follow a regular sleep schedule to keep my hormones in check. There are times where I slip up, but using gradual change I have seen improvements, including semi-regular menstruation and a lessening of my physical symptoms.

Living with PCOS is a struggle, but with research, experimentation and patience, it is possible to find the right strategies and techniques to suit you and your body.