‘It’s heart-breaking’: Call for change in endometriosis care as woman feels like she is 'dying from pain'

Alexandra Czech-Seklecka sometimes feels as though she is “dying from pain”.

It can leave her crawling, unable to walk or unable to move at all.

The 35-year-old, who lives in Inverness, was diagnosed with endometriosis around 15 years ago and has been passed “from doctor to doctor”.

She had surgery and has been prescribed so many painkillers her capacity to take them has been reduced, but nothing seems to have helped.

Catherine Hughes. Picture: John Devlin

Despite her pain beginning two decades later, Ms Czech-Seklecka’s story is similar to that of Catherine Hughes, 53.

Ms Hughes was given a possible endometriosis diagnosis 25 years ago, but like Ms Czech-Seklecka she has other conditions alongside this, and doctors struggled to pinpoint the cause of the pain.

This pain left her “like a demented lion”, and she retired early, while Ms Czech-Seklecka was also forced to quit her job.

Both women have had to travel for treatment – Ms Czech-Seklecka to Edinburgh, and Ms Hughes to London.

Alexandra Czech-Seklecka supporting endometriosis awareness month.

Ms Hughes, who is a member of the Scottish Government cross-party group on chronic pain, is concerned about the care available in Scotland and warns many people like her have been “totally abandoned” during the pandemic.

This is a feeling shared by Karen Gardiner, director of a women’s healthcare company who set up an eight-week online programme during the pandemic aimed at those with pelvic or bladder pain, including endometriosis.

The Scottish Government is offering funded places on the programme until the end of March.

The programme is intended to sit alongside medical care, Dr Gardiner said, supporting patients and helping them to develop hope while on medical waiting lists.

“I've heard more heart-breaking stories talking to endometriosis patients than possibly any other group,” said Dr Gardiner.

“When you ask people to complete pain questionnaires, patients who've got chronic pelvic pain, which includes endometriosis and bladder pain, they often score the pain higher than childbirth.

“What you're talking about here is chronic pain, sometimes acute pain, but pain that is so all consuming that it is really difficult to function or think about anything else.”

These patients are often young, and many have poor mental health as a result of the pain and diminishing hope they can be treated.

There is no “magic wand” to fix the problem, Dr Gardiner said.

Every patient she speaks to ends up in tears, she added, and says it is the first time they have felt listened to or supported.

Dr Gardiner said she believed the healthcare system must focus less on repeated diagnostic tests trying to pinpoint exactly what is wrong, and instead spend more time listening to patients, and taking full medical histories as trauma or childhood experiences often influence pain later in life.

It comes after a Scottish Government-funded report from Endometriosis UK found endometriosis care in Scotland was not meeting the “base level” outlined in standards guidelines.

The average time to get a diagnosis in Scotland is eight-and-a-half years, the report found.

Women’s health minister Maree Todd welcomed the report and said the Scottish Government would work to implement recommendations from the charity.

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