Endometriosis, the battle for better outcomes

By Michelle Monaghan

In July 2022, the UK Government announced a new Women’s Health Strategy to improve the inequalities and problems that women face when it comes to their health. It was the government’s first creation of a women’s health strategy. The 10-year strategy was gathered from 100,000 responses from women and over 400 submissions from organisations and experts in health care.

Fast forward to April 2023, has there been any change in women’s health across the UK? Particularly endometriosis, as March was Endometriosis Awareness Month. Endometriosis is a painful condition that can impact women of all ages and is where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. It’s estimated that 1.5 million women in the UK suffer from it. The condition can cause infertility and affect other parts of a woman’s life physically and mentally. 

Regarding endometriosis, the Women’s Health Strategy says:

  • Women and girls have an awareness of the different gynaecological conditions (such as endometriosis and PCOS) … Women and girls know where, when and how to seek help for menstrual or gynaecological symptoms, and what support and care they can expect.
  • Women and girls with severe endometriosis experience better care, where diagnosis time is reduced on the journey from initial GP appointment through to final diagnosis.
  • For endometriosis, NHS England is updating the service specification for severe endometriosis in 2022 to 2023. Service specifications are important for defining the standards of care expected from organisations commissioned by NHS England to provide specialist care. This update will ensure that specialist endometriosis services have access to the most up-to-date evidence and advice, and will improve standards of care for women with severe endometriosis.
  • In addition, following advice from topic experts, NICE, which provides evidence-based guidelines for healthcare professionals on best practice, has begun a review of its guidelines on endometriosis to consider whether it should be updated. This year NICE will also consider the development of a guideline on PCOS through its usual process for identifying and prioritising guidelines.

Considering these points, it’s surprising that the most recent news for endometriosis did not relate to the Women’s Health Strategy. In March, it was announced that a clinical trial to study a potential new treatment for endometriosis had been given the go-ahead due to funding being received through a partnership between the Wellbeing of Women charity and the Scottish government. 

The trial will use a drug called dichloroacetate which is used to treat rare metabolic disorders in children. It’s found to shrink the size of endometriosis lesions and return lactate production to regular levels. The hope is that the research team will work on refining the drug’s effect on endometriosis with the trial so it can have the best impact on treating the pain and capping the side effects and symptoms. The clinical trial used to treat endometriosis is a part of Scotland’s Women’s Health Plan that was introduced in 2021. 

Maree Todd, Women’s Health Minister for Scotland, said: “Scotland is the first country in the UK to introduce a Women’s Health Plan, with endometriosis being one of its early priorities … I am pleased that we are jointly funding research with Wellbeing of Women into what could be the first non-hormonal treatment for endometriosis. It is a stepping stone to ensuring that those with endometriosis are given treatment choices that suit their needs.” 

In Wales, the Health and Care Research Wales is aiming to improve the quality of life for one in 10 women in Wales living with endometriosis and reduce the wait for a diagnosis. It is being driven by Rachel Joseph, a PhD student at Cardiff University funded by Health and Care Research Wales. 

She is exploring how to improve the first stages of conversations between patients and GPs, to improve the identification of the various symptoms and speed up diagnosis. As part of her research, Rachel will assess the Endometriosis Cymru website and symptom tracker while interviewing patients, GPs and specialist endometriosis nurses. 

While the research is a positive step in the right direction, Wales still lacks a women and girls’ health care plan despite numerous actions and advice, including an initial report by the Welsh NHS. The report from December 2022 highlighted the growing urgency of endometriosis as a top priority and concern from women that the condition is continuously being dismissed or overlooked. 

One woman said: “Believe women when they are in pain. I’ve been told so many times my periods are normal. I was diagnosed with endometriosis at the age of 31.”

With the entire health system under pressure, it’s more urgent than ever that endometriosis cases do not slip through the gaps. However, without any robust implementation from the Women’s Health Strategy, it’s yet to be seen if any improvements will be made and if the UK government will follow Scotland’s example.

PICTURED BY DIANA.GRYTSKU ON FREEPIK: Young woman having abdominal pain.