Getty ImagesNearly 3,500 people have signed a petition calling for the creation of 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 NHS registration means there is a lack of data on the numbers affected and the success rate of different types of treatment.
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) spokesman would not comment directly on the petition, but said the government was “committed to improving the treatment of endometriosis”.
Endometriosis is a condition in which cells similar to those lining the uterus grow in other parts of the body, usually the pelvis.
Symptoms include severe pain, heavy periods, fatigue and, in some cases, infertility.
It can take an average of around nine years for the condition to be diagnosed, according to research from Endometriosis UK.
Ms Barlow-Ford, who was diagnosed in 2012, said she was led to believe a hysterectomy would relieve her symptoms, but it had little effect and she suffered further complications following the operation.
She said treatment often felt “like guesswork.”
The 44-year-old said: “If there was a system to track what works and what doesn't, I would see for myself that hysterectomy is not a cure and make a fully informed choice.”
Hayley Barlow-FordThe UK said poor reporting of the disease was partly to blame.
For example, the charity said that if endometriosis is discovered during keyhole surgery, it may not be officially recorded.
“This means that the numbers [of people] with the disease and the types of treatment received cannot be analyzed accurately,” the spokesperson said.
“This needs to be improved to properly manage care and understand the severity of the disease.”
The charity said it would welcome the opportunity to work with the government to identify and close evidence gaps in endometriosis treatment.
Jessica Smith, who started the petition, has had three surgeries since she was diagnosed with endometriosis in her mid-twenties.
The 32-year-old said the campaign arose out of her “personal frustration” as a patient.
She said: “It feels like we're guinea pigs, a lot of our treatment is a 'try, wait and see' approach.
A DHSC spokesperson said: “Endometriosis is a painful and debilitating condition and women deserve timely diagnosis and care.
“The government is committed to improving the treatment of endometriosis and this year we have delivered two new treatments as well as investing £80 million to give GPs faster access to specialist advice.”
Ms Smith said the endometriosis registry would “fit perfectly” with the Government's register. Women's health strategy.
“It just makes sense to track our treatment, I want the government to take it seriously,” she said.
“I just want information, we all want it. We are in the dark about this.”
