Endometriosis registry could stop ‘guesswork’, patients say

Nearly 3,500 people have signed a petition calling for a national endometriosis registry in the hope of improving care, waiting times and awareness.

The condition affects one in ten women, but Endometriosis UK say poor recording within the NHS meant there was a lack of data about the number of sufferers and the success rate of various types of treatments.

Hayley Barlow-Ford, from Edlington, said she believed a national registry would allow patients and doctors to make “real decisions, rather than relying on trial and error”.

A Department of Health and Social Care (DHSC) spokesperson did not comment directly on the petition but said the government was “determined to improve endometriosis care”.

Endometriosis is a condition in which cells similar to those lining the womb grow in other parts of the body, usually in the pelvic area.

Symptoms include severe pain, heavy periods, fatigue and, in some cases, infertility.

According to research by Endometriosis UK, it can take on average around nine years to be diagnosed with the condition.

Ms Barlow-Ford, who was diagnosed in 2012, said she was led to believe a hysterectomy would help her symptoms, but it had little impact and she suffered further complications after the surgery.

She said treatment had often felt “like guesswork”.

The 44-year-old said: “If there had been a system tracking what works and what doesn’t, I could have seen for myself that a hysterectomy isn’t a cure and made a fully informed choice.”

Endometriosis UK said poor recording of the condition was partly to blame.

For example, the charity said, if endometriosis was discovered during keyhole surgery the fact it had been found may not be formally recorded.

“This means that numbers [of people] with the disease and types of treatment received cannot be accurately analysed,” a spokesperson said.

“This must be improved in order to properly manage care and understand the full extent of those with the disease.”

The charity said it would welcome the opportunity to work with the government on identifying and closing data gaps in endometriosis care.

Jessica Smith, who launched the petition, has had three surgeries since she was diagnosed with endometriosis in her mid-twenties.

The 32-year-old said the campaign had come from her “personal frustration” as a patient.

She said: “It feels like we’re guinea pigs, there’s very much just a ‘try it and wait and see’ approach to our treatment.”

A spokesperson for the DHSC said: “Endometriosis is a painful and debilitating condition, and women deserve timely diagnosis and care.

“This government is determined to improve endometriosis care and this year we’ve made two new treatments available as well as investing £80m to give GPs faster access to specialist advice.”

Ms Smith said an endometriosis registry would “perfectly slot into” the government’s Women’s Health Strategy.

“It just makes logical sense to track our treatments, I want the government to take it seriously,” she said.

” I just want information, we all do. We are so in the dark with this.”