Sheffield youth pushing for conversation about endometriosis

With there being no cure nor precise explanation for the second most common gynaecological illness among women in the UK, some Sheffield youth took it upon themselves to raise awareness about the condition.

The Rotaract Club of Sheffield, a newly established organisation that’s run by young people and aims to empower others aged between 18 and 30 to improve the community, put their minds together to involve people online through a conference and photo competition to ensure that more is being talked about the illness, and for a reason.

Jane Chatterton, the Club’s President, says, “The main thing that it all comes down to is the lack of awareness.

“No matter how much of a buzzword ‘awareness’ has recently become, you got to start somewhere.

“Awareness develops into interest and this transcends into funding for the right organisations and programmes as well as actual solutions rather than abandonment of the problem.”

Every one in 10 women in the UK suffers from endometriosis at a childbearing age. Yet, it takes seven and a half to eight years on average for a woman to be diagnosed; a figure that hasn’t changed in the past decade.

The way that endometriosis forms is that the tissue that lines the inside of a uterus starts growing where it shouldn’t be, such as the ovaries and pelvis. Just like during the normal period, this tissue builds up and shreds during the menstrual cycle before becoming trapped, leading to razor-like pain in the abdomen.

This explains why some of the common symptoms can be masked by their seemingly normal nature: heavy or painful periods, lower stomach pain, pain during or after sex, pain during bowel movements, diarrhoea, constipation and even bloating.

While our society may have gotten too used to the monthly complaints from women about their periods, the women themselves may not question the underlying problems despite their prevalence through the reproductive years.

Catherine Pennington, 24, has only just received her diagnosis a few weeks ago despite experiencing symptoms since she first got her period. As a Treasurer and Marketer of the Sheffield’s Rotaract Club, she has used her experience to break the silence surrounding the condition.

She says, “My periods have always been off since they first started and I always had to miss school because of them.

“I’m a nerd and I hated missing classes while everyone else didn’t have to deal with this every month.

“I’ve been using all kinds of contraceptives since the age of 14 to try and deal with my periods. The doctors would constantly tell me that I would just grow out of it, but I haven’t.

“Most of the times you are just told to take paracetamol to numb down the pain rather than have your symptoms investigated.”

Catherine, who’s a recent Master graduate of Biomedical Sciences from the University of Sheffield, got endometriosis from her mother, who only received the correct diagnosis at the age of 42. Among the presently known causes, genetic predisposition, which was observed in Catherine’s case, is one of them.

Catherine says about her mother, “When she was 15, she was advised by her GP that perhaps to deal with the symptoms she should just get pregnant.

“Her symptoms continued and she kept getting bogged off by the doctors.

“One of her previous gynaecologists told the other that there was no point giving her anymore tests and that it’s all in her mind.”

In 2003, Catherine’s mother went for a check-up looking as though she was ‘nine months pregnant’ because of the bloating, or rather the ‘endo-belly,’ a term coined by the online communities of women suffering from endometriosis.

Only seven years later did another gynaecologist take notice of her symptoms, when she kept rocking back and forth during one of the appointments while on her period, and prescribe a diagnostic laparoscopy, a surgery where a small telescope is inserted into the abdomen to confidently diagnose the condition. While she was told it was only meant as a precautionary measure, it was then revealed to her that she had severe endometriosis.

Catherine says, “It was hard seeing my mum go through all of this, and it seems to me that a lot of people are gaslighted by the medical professionals.

“If I hadn't already been armed with that information, I’d have been waiting forever just like everyone else, listening to the doctors telling you to lose weight or get on a pill. Even if the pill works, it shouldn’t be the only option out there.”

When it comes to being ignored by the medical community, a recently published report conducted by the All Party Parliamentary Group has discovered that almost half of all the 10,000 endometriosis patients involved in the survey found their GPs unhelpful or very unhelpful.

After waiting for a laparoscopy since December due to the lockdown, Catherine had to endure the experience of going for the surgery alone. Partly due to her medically related degree and partly thanks to her informational preparedness, she remained calm while surrounded by women who kept ‘sobbing and making constant phone calls.’

Given the invasiveness of the surgery, more research is now being conducted by those at the University of Oxford to find better ways of diagnosing a condition that’s as common as diabetes.

Catherine adds, “There's a lot of shame and a lot of pressure to keep up with everyone else.

“Anywhere you work, you can’t take two days off for being on your period, and unfortunately taking the time off is not how our society works.

“And yet you keep questioning why you can't do all the things that everyone else is doing; how come no one complains about the pain the way i feel it?”

Even then, endometriosis affects each woman differently, given that there are several types of it based on what organ areas are affected, as well as the four stages of its severity.

During the conference that the Rotaract Club organised, it has come to light that the existing four-stage classification has only been efficient when predicting the condition’s impact on a woman’s fertility.

Dr Lucy Whitaker, Clinical Lecturer in Obstetrics and Gynaecology at the University of Edinburgh, says, “The problem is, these [stages] didn’t really correlate with the symptoms.

“It certainly didn’t predict a treatment response and it didn’t also predict the disease progression, so using this as a way of defining the disease wasn’t particularly helpful.”

Dr Whitaker also mentioned that The University of Edinburgh researchers have been trying to find new ways to treat the condition to offer women better options than just the contraceptive painkillers or hormones, which can either be ineffective, lead to ‘unacceptable’ side effects or make women postpone the time when they can create a family.

She says, “I think we’re slowly catching up with other specialties that if you can phenotype your disease better, so if you can split it down into all the subtypes, that can really move forward how you treat these different conditions more effectively rather than just having a [blanket] approach of giving people a combination of hormones, painkillers and surgery.

“It’s about finding the right treatment for the right patient.”

For young women like Catherine, their ability to be diagnosed on time rather than years after the first signs of endometriosis develop can be largely dependent on how informed they are of what kind of pain is or isn’t normal in a society where period suffering is normalised.

Despite some mind-blowing medical breakthroughs that are happening around the world such as with the COVID-19 vaccine, it is only recently that Scotland became the first country in the world to make period products freely accessible for women, who make up a half of the UK’s population.

With the right tools, raising awareness using community initiatives and a personal voice can be the crucial step in bringing attention to the gaps in medical practice. In turn, the right scientific improvements and research can finally make the lives of millions of women a bit easier when they reach ‘that’ time of the month again.

Edited by Madeleine Gill