Like thousands of women Megan English suffers from the horrific symptoms of Polycystic Ovary Syndrome

“I’ve been to the hospital five times over the past two years with immense abdominal pain that spreads to my lower back and has made me faint or double over onto the floor in pain,” says Megan English from North Yorkshire. The University of Cumbria student is in her first year studying acting but behind the scenes she suffers from incurable gynaecological condition polycystic ovary syndrome (PCOS). 

The thought of never becoming pregnant crosses most women’s minds at some point while growing up. The fear of never having your own baby can be crushing, unfair and very hard to accept.

Sitting in the ultrasound waiting room watching the happy couples awaiting their baby scans while you sit waiting for your diagnostic ultrasound. The clinical smells wafting round the waiting room clinging to every surface and the busy professionals bustling to and fro calling names of the patients sat waiting. Your anxiety riddled body dreading the results of the scan ahead of you. 

You can never be fully prepared for your first trip to the gynaecologist and it is often a case of leaving your dignity at the door. A visit to a gynaecologist can include invasive pelvic examinations, detailed conversations about your sex life and countless recommendations of the contraceptive pill – which is basically trial and error. 

Midwife Lucy Slater says: “Developing from a young girl into a woman is a confusing time for most. If there are intimate and gynaecological concerns, young women do not feel confident in discussing these with parents and healthcare professionals. Many do not understand the ‘normal’ cycles of the body and what actually happens, so how are they meant to detect abnormal ones?”

PCOS affects one in five women of reproductive age in the UK yet my research shows that many people aged between 13 and 25 have never heard of it. I conducted a poll asking 77 people of this age range if they had heard of PCOS and only 40% said they had. 

Twenty year-old Megan is one in five. She was recently diagnosed after being told four years ago she was not the right shape or size to have the condition. 

“I first went to the doctors when I was 15. I wasn’t having periods for months at a time and when I did, they lasted over two weeks or sometimes only two days,” she says, “PCOS was brought up but doctors wouldn’t diagnose me and they also couldn’t do an internal ultrasound as I was underage. I kept going back to the doctors but they didn’t know what it was, I suffered the symptoms for years and then things escalated and I started getting pain regularly.”

As well as lower abdominal pain and abnormal periods Megan also suffers other symptoms including thinning hair, weight increase and darker hair growth. 

“I sometimes get a swollen abdomen, and discomfort after intercourse which feels like a sharp stabbing pain which lasts for up to an hour afterwards,” she recounts. Megan was finally diagnosed in November last year following an ultrasound investigating constant lower bowel pain. 

“I felt almost relieved, I had finally found out what was causing my issues, but I also feel slightly disappointed because it took years to diagnose and it was mentioned by doctors when I was 15. Following the diagnosis, the doctors were lovely and they’ve given me a list of what they’re going to do to monitor the condition and how they will make it easier for me,” explained Megan. 

Natasha Wragg, nurse at Manchester University NHS Foundation Trust says: “Knowing and understanding your body and how to manage your symptoms whilst leading a productive and healthy lifestyle is essential. PCOS carries lots of emotional turmoil and psychological impacts which should be discussed openly in order to properly come to terms with diagnosis and symptoms. What clinicians may term as minor symptoms, such as weight gain, can have a profound effect on identity.”

Polycystic ovary sufferer Linda Richardson, 35, who is also from North Yorkshire was diagnosed with the condition when she was 17. Nearly 20 years later she is still learning to manage the endless number of symptoms including excess hair growth, dark tones to the skin and painful cysts. 

“I get bad pains in my stomach every day and I have had cysts burst and the pain is like nothing I’ve ever felt before. I’m always moody and I often get anxious and depressed but my husband, Rob, is used to me being like this so he helps me through,” she said, “They tried putting me on metformin to help but it made me feel worse.” 

PCOS is a hormone condition which affects how a women’s ovaries work. To be diagnosed you have to have signs of two of the following symptoms: irregular periods, excess androgen and polycystic ovaries. You may also suffer from numerous other symptoms including difficulty getting pregnant, weight gain, hair loss and severe acne. 

Linda explains: “I used to miss periods for months and then I bled heavily for a year so I had to have a mirena coil fitted for five years which I recently had removed which was very painful as it had embedded itself.” 

The mirena coil is a small T-shaped device which fits into the uterus and releases a hormone called progesterone. It can be used to treat a number of issues as well as for contraception, including abnormal bleeding, reducing pain, and managing symptoms of gynaecological conditions. 

“I was 18 when I found out I couldn’t get pregnant after lots of tests and scans,” Linda added.

Managing PCOS is important because it puts women at a higher risk for other conditions including high blood pressure, high cholesterol, diabetes and heart disease. Lucy says: “The management is critical as it can provide pathways to enhancing health. It has a number of symptoms and women will be affected by these differently. If the condition is managed, women can be more empowered and feel more in control of their body. PCOS won’t control a woman’s life unless they let it.

“There needs to be more awareness of the condition, if there was then people may be inclined to discuss PCOS without stigma.”

Although there is currently no cure for PCOS it can be managed with a variety of options including medication, surgery and a weight loss. It is not always easy to diagnose because there are several symptoms which overlap with other hormonal disorders just like in Megan’s case. 

“I’ve had this for so many years,” she says, “but it has only just been discovered because unfortunately my symptoms are similar to other illnesses such as IBS, but it’s definitely important to raise awareness as many people get misdiagnosed which causes endless frustration and untreated symptoms.” 

Natasha explains: “PCOS if undiagnosed can lead to serious complications in terms of preservation of viable ovarian tissue. Small indicators such as irregular or heavy and painful periods are often not discussed or tackled due to social stigmas. Raising awareness and encouraging healthy open discussion about what PCOS is and how it can manifest is opening the door on an issue, we as a society, should have addressed decades ago.”