Based on specialists, the healthcare system’s perspective in direction of endometriosis is a disgrace

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Jess Sandoval’s health was so bad that doctors told her last January that she could no longer work and that she would have to retire medically.

Thorndon’s mother, now 41, has endometriosis: a serious condition affecting more than 130,000 women and girls in which endometrial tissue grows outside of the uterus. The former yoga teacher and finance worker had a number of surgeries for the illness and is now living in chronic pain.

“It just destroyed my body. Every time I tried to go back to work, I passed out. “

Endometriosis diagnosis takes an average of eight years. In the meantime, sufferers need to manage symptoms such as chronic pain, nausea, and excessive bleeding, leading to work and school holidays, stress, and mental health issues.

This is not good enough for an expert on the disorder who has called the actions and attitudes of the health system “shame”.

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Sandoval, who runs the online Endometriosis Aotearoa support group, has heard of hundreds of women and girls struggling with the disease, whose symptoms are often dismissed as painful periods. These include a 13-year-old who has already undergone four surgeries and a suicidal 12-year-old.

“What I’ve noticed since starting my site is the impact it has on younger people. It’s just heartbreaking, “she said.

There is a lack of understanding of the disease, according to Deborah Bush, executive director of Endometriosis New Zealand. “Endometriosis is a low priority in the health system. That leads to all aspects of endometriosis treatment. ”

Jess Sandoval has to undergo hip replacement surgery but hopes to return to work after she has recovered.

MONIQUE FORD / STUFF / Stuff

Jess Sandoval has to undergo hip replacement surgery, but hopes to return to work after she has recovered.

Bush was involved in the Australian government’s 2018 National Endometriosis Action Plan, which included training Australian clinicians, investing $ 2.5 million in research funding and $ 9 million in diagnostic testing.

In March last year, the New Zealand government released best practice guidelines for treating endometriosis, but little was done to ensure doctors were aware of or were using the new guidelines, Bush said.

“No amount of government money was put into implementation. Each district health department has its own rules and may or may not accept them. “

There is a lack of understanding of the disease, according to Deborah Bush, executive director of Endometriosis New Zealand.

Iain McGregor / Stuff

There is a lack of understanding of the disease, according to Deborah Bush, executive director of Endometriosis New Zealand.

Meanwhile, only one project on endometriosis has been funded by the government’s primary health research funder, the Health Research Council, in the past decade. It is not the only health research funder in New Zealand, however.

But Bush wants more for those affected by New Zealand.

“The opposition from our Department of Health and Government to recognize this as a public health issue is a shame,” she said.

Sandoval is also struggling with her own health problems and is a single parent. She had a number of surgeries and was left with a lot of scar tissue.

The pain was so bad that she fell over and damaged her hips to the point where she needed more surgery.

Jess Sandoval has endometriosis and was forced to retire medically at 40.

Monique Ford / things

Jess Sandoval has endometriosis and was forced to retire medically at 40.

“My endometriosis surgery caused all of these other health problems. It affects your whole body; your legs and your stomach, ”she said.

“Sometimes I can’t get up for hours. Sometimes I’m in the bathtub and can’t get out and my son is lying in bed waiting to be cuddled. “

But she is optimistic about her future and hopes to be able to work again.

“Once I get my hips sorted, I should be back to work part-time in a year or a year and a half,” she said.

A health ministry spokesman said the 2020 guidelines had been given to all DHBs and members of the Royal New Zealand College of General Practitioners.

“The Department strongly encourages all relevant health professionals to familiarize themselves with the guidelines so that they can incorporate them into their care. Through our discussions with a number of stakeholders, we know that these guidelines are an important addition to assist clinicians in the early detection and treatment of endometriosis. ”

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