We need to hear, not dismiss, women seeking PCOS treatment

When Kathrin Folkendt was diagnosed with polycystic ovary syndrome (PCOS), all her doctor seemed to be interested in was whether or not she intended to have children. Kathrin had never tried to get pregnant nor was planning to, but had been struggling with acne and excessive body hair growth (hirsutism) for most of her adult life.

“I was asked what my partner thought about me going on birth control and how I felt about having a baby, but I wanted to talk to someone about how I could manage all the other symptoms,” she says. PCOS is the most common cause of infertility in young women,¹ but can also cause a host of other symptoms, including weight gain, irregular periods, and excess facial or body hair growth, that can significantly affect someone’s quality of life.

“The fertility conversation can be quite triggering for women who want to have children, and then for others, it’s like: is this all my life is about, whether or not I have a child?” says Kathrin.

“I found it a real insult that they were essentially trying to act as a gatekeeper for when it would be considered appropriate for me to have concerns about my fertility”

PCOS is one of the most common endocrine disorders in women of reproductive age, and is estimated to affect up to 26% of women.² Weight loss and fertility are genuine and important concerns in relation to PCOS, yet treatment is too often reduced into a focus on these factors rather than considering the complete picture of how someone is affected by the condition. This can lead to women’s concerns being addressed superficially or outright dismissed.

For Letitia Young, her doctor’s view that she was too young to be worried about fertility issues meant that she wasn’t taken seriously when seeking help. Letitia always knew that she wanted to start a family and was worried that her irregular periods, that she’d been having since age 13, might have implications for her fertility. She decided to see her doctor about it at age 21.

“I found it a real insult that they were essentially trying to act as a gatekeeper for when it would be considered appropriate for me to have concerns about my fertility and what to think about starting a family,” Letitia says. She repeatedly asked for a scan to investigate further, making appointments every few weeks for about six months until her doctor finally agreed.

Letitia was diagnosed with PCOS following the scan, but only received any form of treatment after she mentioned that she’d been gaining weight. She was then prescribed metformin, a medicine that lowers blood sugar levels and can stimulate ovulation, and managed to get pregnant five weeks later.

It is damaging and reductive to dismiss someone’s concerns by simply telling them to lose weight

Fertility nurse consultant Kate Davies has worked across gynaecology, fertility, and sexual health over the course of her career in the NHS, and became so frustrated with the lack of holistic support offered patients that she left her job to start her own private practice.

“I’ve had women tell me that doctors have said: ‘You’re fat, go and lose weight’. They were told to lose weight and not given any support,” says Kate. “I got really frustrated with regards to fertility care for women and felt they weren’t given all the information they needed about conceiving naturally. If they tried to conceive naturally, they were referred to the doctor and told: ‘Go away, you need to lose weight’.”

While healthy weight loss practices have been shown to have a positive effect on PCOS symptoms,³ weight is one factor within the bigger, and individual, picture of a person’s life and treatment should reflect this. It is damaging and reductive to dismiss someone’s concerns by simply telling them to lose weight.

“Yes, lifestyle plays a big role in PCOS. Weight and dietary management is a huge part of that, but it needs to be a holistic, integrated approach,” says Mr Michael Dooley, consultant gynaecologist at King Edward VII’s Hospital. Mr is a title used by surgical consultants in the UK, in place of Dr.

“But the main reason why diagnosis can take so long is that women are not listened to”

Kate and Mr Dooley agree that more education and interest in PCOS, and women’s health more generally, is needed among healthcare professionals in the UK. One example of this is during the diagnostic process for PCOS, where doctors must prove at least two of the following three criteria: infrequent or no ovulation, hyperandrogenism (excessive amount of androgen hormones), or polycystic ovaries.^4,5 A polycystic ovary has many small, fluid-filled sacs growing on it, and can be identified via an ultrasound.

However, just because a woman’s scan reveals polycystic ovaries, it doesn’t necessarily mean that she has PCOS, says Mr Dooley: “This is where a lot of people are misdiagnosed or underdiagnosed. And that’s where the problem is, if you go for a scan and they say you have polycystic ovaries, then you have been compartmentalised. It should be: ‘Please see this patient with this problem’, not ‘Please see this patient with polycystic ovaries’.”

“There is a lack of knowledge by professionals but I think that this is improving,” says Kate. “But the main reason why diagnosis can take so long is that women are not listened to.”
 

Featured image is a cartoon-like illustration of three figures against a purple background. From left-right, there is a hand holding a pregnancy test, a woman with hair on her upper lip, and a plus-size woman with her hand resting on her stomach

Page last updated August 2020