Endometriosis sufferers are calling for systematic change as diagnostic delays persist after Best Practice Guidelines were released last year.
By Larissa Howie
The guidelines were released by the Ministry of Health to help with treatment and diagnosis of the crippling condition which affects one in 10 women.
Ren Tewnion, 28, says if she had not made the switch to private care, she would still be fighting for a diagnosis.
She wants general practitioners to be given the ability to spend more time with patients, so they can look at their health holistically.
“I don't blame the health professionals, I don't think we can put so much onus on them ... I think the system itself needs a change,” she said.
Tewnion has been living with pain from endometriosis since she experienced her first period aged 10.
The pain is caused by tissue, which is usually found on the uterus, spreading to other organs.
“I gave up sports that I loved because of it as well, and I missed a lot of school, just from being in debilitating pain.”
Tewnion says the pain would cause her to throw up or pass out.
She says the public health system had dismissed her agony for 17 years.
With her fertility hanging in the balance, she paid to see a gynaecologist where she was immediately booked for laparoscopic surgery.
“If I hadn't done it last year it probably would have started affecting my fertility... my ovaries were getting pulled down and starting to adhere to other tissues.”
She says now she is on the other side of her surgery, she is concerned for the women who do not have that option.
“I know so many women who are still struggling in the public system to even get a referral to a gynaecologist.”
A number of women contacted 1 NEWS with similar experiences to Tewnion. They describe endometriosis as an “awful condition”, and say their pain is often fobbed off.
Endometriosis New Zealand chief executive Deborah Bush says a push last year to improve treatment through the release of the guidelines, has so far failed.
“The clinical pathway is now buried in the bowels of the ministry of health website,” she said.
Bush wants there to be a planned strategy.
“Otherwise the bits and pieces that have been done are just fragmented.”
She says it is important for girls to be educated about endometriosis when learning about their periods, as early detection is crucial.
Bush says 27 per cent of girls are absent from school due to severe period pain.
Endometriosis NZ provides endometriosis education in a few schools to address the issue.
“It’s definitely a gender issue, and young people should not be marginalised because of their gender.”
The Ministry of Health says the guidelines have been sent to District Health Boards (DHBs) and encourages their use as an important addition to help in the early detection and treatment of endometriosis.
A number of DHBs contacted by 1 NEWS say no additional funding has been allocated for the treatment of the condition.