Endometriosis registry could stop ‘guesswork’, patients say

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

The condition affects one in ten women, but Endometriosis UK says poor recording within the NHS means there is a lack of data on the number of people affected and the success rate of different types of treatments.

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

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

Endometriosis is a condition in which cells similar to those lining the uterus develop 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 a study conducted by Endometriosis UK, it can take on average around nine years to diagnose this condition.

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

She said the treatment often felt like “guesswork.”

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

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

For example, the charity said, if endometriosis was discovered during keyhole surgery, the fact that it was discovered might not be officially recorded.

“This means that the numbers [of people] The illness and types of treatment received cannot be analyzed precisely,” a spokesperson said.

“This needs to be improved in order to properly manage care and understand the full extent of who has the disease.”

The charity said it would welcome the opportunity to work with the government to identify and close data gaps in endometriosis care.

Jessica Smith, who started the petition, has undergone three surgeries since being diagnosed with endometriosis in her mid-20s.

The 32-year-old said the campaign was born out of her “personal frustration” as a patient.

She said: “We feel like we are guinea pigs, our treatment is just a ‘try it and wait and see’ approach.

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

“This Government is committed to improving endometriosis care and this year we have made two new treatments available and invested £80 million to give GPs quicker access to specialist advice.”

Ms Smith said an endometriosis register would “fit perfectly” into the government’s women’s health strategy.

“It makes sense to follow our treatments, I want the government to take this seriously,” she said.

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