Endo the Battle: Women's health minister vows to cut endometriosis waitlists - but patients say more is needed

The Scottish government has said is committed to tackling “unacceptable” waiting lists for gynaecology services, as it responds to the concerns of hundreds of patients living with endometriosis.

Women’s health minister Jenny Minto accepted that patients living with the condition are facing “pain and discomfort” while waiting for a diagnosis, as she highlighted ongoing work to improve endometriosis care - which one patient said was a “step in the right direction”.

We have been amplifying the voices of those living with the debilitating, yet common, condition, in our Endo the Battle campaign. Patients in Scotland currently wait on average eight years and 10 months to get a diagnosis.

In April, we wrote an open letter to health ministers across the UK highlighting our findings and calling for an end to the “cycle of suffering” for endometriosis patients.

More than 400 of you shared your experience with endometriosis with us via our anonymous survey, with key issues identified including delays in getting a diagnosis, lengthy waiting lists, knowledge gaps within the healthcare sector and the crippling costs of seeking private care.

If you woke up with your first symptoms of endometriosis today, you’re likely not to get a diagnosis until 2034 | National World

We called for urgent action to improve healthcare and the financial cost of living with the condition, including upskilling frontline medical professionals, committing to care for extra pelvic endometriosis and providing endometriosis education in schools.

In response to our findings, the Scottish Government’s women’s health minister Jenny Minto said: “I understand that endometriosis can have a significant impact on people’s lives.

“We are committed to ensuring those living with endometriosis symptoms benefit from healthcare services that are safe, effective and put people at the centre of their care. That is why it is one of the key priorities in the Women’s Health Plan.

“We have taken action to support both women and health professionals to learn more about menstrual health - including endometriosis, the symptoms and treatment options - so that women are supported to get the help they need and waiting times for diagnosis can improve.

“We know many women are in pain and discomfort while facing long waits for gynaecology services and this is not acceptable. The 2025-26 Budget will provide a record £21.7 billion for Health and Social Care, including almost £200 million to reduce waiting lists and improve flow through hospitals, and gynaecology will be targeted as a key priority area for additional funding. Timely access to gynaecology services will be a priority as we continue to develop our Women’s Health Plan.”

Scotland was the first country in the UK to publish a Women’s Health Plan in August 2021. In its response, the government said that wide-ranging progress had been made in the first three years, as highlighted in the Women’s Health Plan Final Report which was published in November 2024.

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This includes the publication of an Endometriosis Care Pathway for NHS Scotland and the provision of educational materials for healthcare professionals.

The government also told us that they have “improved access to information for women and girls on menstrual health symptoms, conditions including endometriosis” in Scotland through the Women’s Health Platform on NHS Inform.

Menstrual health and wellbeing education is also a key part of relationships, sexual health and parenthood (RSHP) education, and the government has also supported an engagement campaign in partnership with Young Scot to increase young people’s awareness of endometriosis aimed at those aged 11 to 25.

Amy Liston is saving up to travel to London for endometriosis care. | Amy Liston

We spoke to Scottish patients about the government’s response and while some welcomed a “step in the right direction”, they called for more to be done to improve care.

Amy Liston is a self-employed artist who spoke to us as part of our campaign. She is currently saving up to travel to London for care in a multidisciplinary endometriosis centre, after her symptoms continued following a previous surgical procedure.

Responding to the Scottish government’s statement, the 25-year-old said: “My opinion is that there needs to be more safeguarding, they can talk about focusing on cutting down waitlists but until there's an overhaul on education from school nurses to specialist surgeons, counselling on hand during the journey and waiting times, and then the financial struggle - we take on trying to self manage the pain and symptoms while waiting.

“I think to anyone not in the know, their response would seem really promising, but to us who know what's going on, it could be better.

“It is definitely a step in the right direction.”

The Endo the Battle campaign is being spearheaded by health writer Sarah McCann - read her endometriosis story.

If you have been affected by the content of this open letter or suspect you may have endometriosis you can find out more at the Menstrual Health Project.