Why is endometriosis a feminist issue?

Endometriosis is a systemic, inflammatory disease characterised by the presence of endometrial-like tissue found in extrauterine sites. It is a chronic, full body disease as endometrial cells build up, break down and bleed in sites outside the uterus. This most commonly occurs in the pelvis, where blood cannot escape.

Endometriosis causes scar tissue to form internally with adhesions to other endometrial cells and inflammation. Endometriosis can be experienced by individuals of any gender who have the internal reproductive system of a uterus and ovaries. Yet it is not a period disease, as it directly and symptomatically affects the entire body. Sufferers of endometriosis can experience debilitating symptoms including chronic pain, extreme periods pain, nausea, fatigue, bloating, constipation, dizziness, diarrhoea, insomnia, and infertility. However, with adequate endometriosis treatment, these symptoms can be eased and addressed.

Although endometriosis affects roughly 10% of menstruating people (190 million people worldwide), the average diagnosis time is eight years! Shockingly for sufferers, if you have your first endometriosis symptom today, you will not receive confirmation of the diagnosis until September 2032. Without a prompt diagnosis you will not have adequate awareness of the condition to have access to medical care to manage the symptoms.

“A condition as common as Asthma & Diabetes should not take between 7-9 years to diagnose” - The Endometriosis Foundation

Endometriosis is under-researched, under-diagnosed and under-treated. Health issues affecting any gender deserve equal treatment, by society, by medical professionals and the medical institutions. Endometriosis is an example of a disease consistently underestimated and under diagnosed properly, more likely because of its association with female health. Endometrial cells can be present in and around the lungs, bladder, bowl, ovaries and more. The dismissal of endometriosis as merely a condition of a woman having ‘bad periods,’ is not only medically and socially inaccurate, it also exasperates the experience and exclusion of patients who do not fit the “menstruating profile” (for example, post-menopausal women, trans men, pregnant people). Poor diagnosis results in sufferers not receiving treatment and trivialises the pain felt by patients.

Currently, the World Health Organisation lists the following factors that could contribute to the formation of endometriosis: retrograde menstruation, cellular metaplasia, stem cells, and potentially oestrogen. However, there is no known precise cause of endometriosis, and therefore no known cure. In fact, there is no formal teaching about endometriosis for trainee doctors at universities in the UK, so inevitably care pathways, referrals, explanations, treatment options and cures are delayed. We can change that. We can reach out and help global and national charities which are dedicated to demanding a managed clinical network for women with suspected or confirmed endometriosis. This can be done through GPs, gynaecologists, practice nurses, school nurses, sexual health services and specialist endometriosis services. Examples of these charities are Endometriosis UK and The Endometriosis Foundation. 

We can increase awareness of the symptoms and realities of endometriosis, by researching and engaging with discourse about the disease.

We can increase awareness of the symptoms and the realities of endometriosis by researching and engaging with discourse about the disease. By so doing, individuals who may have put up with debilitating period pain might consider visiting a medical professional to manage their symptoms. It will also help individuals, who are pre-diagnosis, to become more informed about the condition. This will allow them to advocate for their health when potentially faced with people who might dismiss endometriosis as excessive period pain.

We can also change the language used about endometriosis in health care settings. Thus, ensuring that the dismissal of chronic pain and debilitating symptoms as ‘simply bad period pain’ is not normalised. We can use more inclusive language so that sufferers who do not fit the menstruating profile can more easily access treatment for endometriosis.

A vital part of protecting the NHS is protecting the NHS for all. We should push for endometriosis to be more thoroughly researched and recognised in the UK through the NHS, governmental and non-governmental organisations. Beyond the UK, endometriosis affects nearly 200 million people worldwide. Advocating for change nationally and internationally throughout society, governmental, and non-governmental organisations, is vital.

by Paula Barker MP