Endometriosis – so much more than just a “bad period”

Published 01/07/2022   |   Reading Time minutes

On the 23 May, the Senedd’s Petitions Committee considered a petition to improve endometriosis healthcare in Wales. It was submitted by Beth Hales and collected almost 6,000 signatures.  

Endometriosis is a condition where tissue, similar to that found inside the womb, is found elsewhere in the body. For some, this can cause severe symptoms, including extreme pelvic pain or pain wherever the disease is located, and, sometimes, infertility. The condition can affect girls, women and those assigned female at birth. It takes an average of 9 years and 26 visits to the doctor to diagnose in Wales.

This article considers recent developments in endometriosis care and information on where you can find support.

Endometriosis care review 2018 – What’s been achieved?

A report by Fair Treatment for the Women of Wales (FTWW) in September 2015, describes the delays and impact of poor understanding and provision of endometriosis services. Following this, NHS Wales established a Task and Finish Group to review endometriosis services, chaired by consultant obstetrician and gynaecologist, Mr Richard Penketh.

The Task and Finish group’s 2018 report made several recommendations to Welsh Government, including raising awareness among health professionals and promoting education around menstrual well-being. These were accepted by the then Health Minister, Vaughan Gething MS, who tasked the Women’s Health Implementation Group with taking them forward.

The COVID-19 pandemic has been a key factor in the slow progress that’s been made. Most of gynaecology is elective and was therefore not considered a priority in the early phases of the pandemic.

There are three key developments that are worth noting:

  • The recent announcement (March 2022) that specialist endometriosis nurses have been appointed in each Health Board. The nurses will lead on improving awareness and diagnosis, as well as providing menopause expertise, pain management advice, and psychological support.
  • A focus on menstruation education and breaking down the taboo surrounding periods and menstrual well-being, including the Bloody Brilliant campaign (which aims to stop making girls and young women feel as if it’s normal to suffer in severe pain with periods).
  • The launch of Endometriosis Cymru, a bi-lingual website aimed at supporting people in Wales and beyond with a potential or confirmed diagnosis of endometriosis. It includes patient accounts, information, and a number of tools to help those living with symptoms track their impact and report them to their doctor(s) and improve conversations about the impact of symptoms on quality of life.

Living with endometriosis – common symptoms

Despite affecting around one in ten women in the UK, it took until 2017 for the National Institute for Health and Care Excellence (NICE) to publish guidance to doctors on how to deal with endometriosis.

Leading author and feminist campaigner Caroline Perez says there’s been a failure to listen to women, especially when it comes to pain. She says “women’s physical pain is far more likely to be dismissed as ‘emotional’ or ‘psychosomatic’.

Endometriosis advocate Ros Wood says the condition is difficult to understand:

From a woman’s perspective, endometriosis is a disease surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments, and a lack of awareness, overlaid on a wide variety of symptoms that embody a stubborn, frustrating and, for many, painfully chronic condition.

Painful periods, chronic pelvic pain, pain during or after sex, painful urination and bowel movements, fatigue and tiredness and difficulties getting pregnant, are all common symptoms of endometriosis. Symptoms can vary in their severity but for some girls and women it can be a chronic and debilitating condition.

Evidence suggests that public awareness about endometriosis is generally poor. That’s despite it being as common as diabetes or asthma.

Women say that trying to get a diagnosis can be exhausting and frustrating

An inquiry report of the UK’s All Party Parliamentary Group (APPG) on endometriosis reported two years ago that diagnosis in Wales takes on average 9 years, a year longer than in England, and can involve the distress of repeated medical appointments that fail to identity a cause for symptoms.

FTWW say that a lack of awareness and understanding of the disease among healthcare professionals leads to delays in care for women. There is also evidence that some GPs are giving women inaccurate or conflicting information about the disease, leading to misdiagnoses.

FTWW say that one of the biggest problems for patients is that symptoms are so wide and varied that it can be challenging to identify endometriosis as the cause. Combined with the continued lack of a non-invasive diagnostic test, GPs will often end up sending patients for lots of different investigations, as opposed to making a referral to gynaecology, even though symptoms may well be suggestive of endometriosis. For a significant proportion of women, endometriosis will not be visible on any sort of scan or pelvic examination.

Diagnosis of the condition is usually through a laparoscopy. (This is a keyhole operation performed to spot the lesions and adhesions that make up the disease). Because endometriosis can take on lots of different appearances and be hidden behind or underneath organs, sometimes it can get missed which can further delay diagnosis and treatment.

Women report waiting years to be referred to a gynaecologist. Then, there are long waiting times for gynaecology appointments and surgery. Pre-pandemic, 48% of endometriosis patients in Wales could expect to wait more than 6 months for a hospital appointment (versus the UK average of 30%), a situation worsened by pandemic-related delays.

Finding good care and treatment can be tough

There are currently only two doctors who specialise in endometriosis in Wales. FTWW explain that the current gold standard surgical treatment for endometriosis is called excision. This is where the lesions are properly removed - cut out, rather than just burned. FTWW say the lack of specialists means many sufferers will have repeated ineffective surgeries to burn the endometriosis - comparable to only taking the tip off an iceberg. The disease remains below the surface and often symptoms persist.

They also say that most general gynaecologists do not have the expertise to excise endometriosis.

Often women are referred for a hysterectomy (removal of the uterus) and/or removal of the ovaries, or are offered hormone medicines (like the pill or the coil, or menopause-inducing injections). This treatment might ease symptoms for some women but they don’t cure the disease and they are not without significant side-effects for a considerable number of patients.

Like so many conditions affecting women, the effectiveness of treatments to manage endometriosis is under-researched.

Specialist care

The NICE endometriosis guidance states that patients needing specialist care should be referred to a British Society for Gynaecological Endoscopy (BSGE) -accredited endometriosis specialist centre. But that is not always the case.

There is a BSGE centre at University Hospital of Wales, Cardiff and a second, provisional centre at the Singleton Hospital Swansea. Patients outside Cardiff needing specialist care can be referred but FTWW say “inadequate funding arrangements are preventing out of area referrals”. They want to see specialist care brought under the remit of the Welsh Health Specialist Services Committee (WHSSC) to overcome existing funding challenges and to end the “postcode lottery” in care.

There’s certainly a commitment from the current Health Minister, Eluned Morgan MS to improve endometriosis care. This commitment may become clearer next month when the Minister publishes her quality statement on women’s health.

Further information and support

Article by Sarah Hatherley, Senedd Research, Welsh Parliament