28 Sep 2020

Covid-19 delays leave hundreds with endometriosis in pain

5:44 am on 28 September 2020

Hundreds of women and girls in pain and distress say they haven't been able to get treatment for their endometriosis since Covid-19 hit.

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Photo: 123RF

Endometriosis NZ says it was contacted by 568 women over the first lockdown alone and, six months later, many have not had the care they need.

The condition, in which uterine cells grow in other parts of the body, can cause crippling pain, bowel problems and can fuse organs together.

Endometriosis NZ chief executive Deborah Bush said many women were feeling distressed and desperate after their surgery or appointments were cancelled, because hospitals called off elective procedures.

The flow on effects of the chronic pain had cost some of them jobs and relationships, and they had been hanging hope on surgery. And many were still waiting for care six months later, as public health services played Covid- catch up, she said.

West Auckland woman Ali Larsen has had endometriosis for about 20 years. Despite a hysterectomy and having an ovary removed she still suffered the effects of the condition.

She said she spent two nights in hospital in August in severe pain, then tried to get an urgent specialist appointment with a Waitematā DHB specialist, but couldn't be seen until November.

"And that was after me ringing numerous times, going down and seeing them and actually pushing," she said.

She had dealt with some great doctors at the DHB, but had also previously been dismissed as a drug seeker, and was told by one that the condition wasn't "sexy enough" to get the priority it needed, she said.

"Some days you can't even get out of bed and the days like this morning, when I forced myself out of bed to do a little bit of yoga and some housework, it's just exhausting, mentally and physically," she said.

Endometriosis NZ says the disease affects one in ten girls and women. But the organisation's chief executive Deborah Bush said the Ministry of Health was still not giving the condition the attention it deserved, despite agreeing to a plan that would help get faster diagnosis and treatment.

Surgery for the disease shouldn't automatically be considered as elective, because for many women it was urgent, she said.

Auckland gynaecologist Michelle Wise said a timely diagnosis was important for the disease, which could start when a girl first began to get periods.

Early intervention could slow the progression of the disease or prevent severe symptoms, she said.

The Covid-19 pandemic was a big disruption, and everyone - from specialists to DHBs - was working hard to try to catch up, she said

Women with cancer were being prioritised.

"It's been a really difficult year... for so many reasons. I'd like to think that women still have access to their primary care providers, and they can still access physiotherapy and psychology and nursing.

"That part is all really important for women to be able to look after themselves and access care for those initial medical treatments," Dr Wise said.

The Ministry of Health said it recognised the long term strain endometriosis caused, and it backed - and was promoting - new guidelines for care.

DHBs were making progress on the Covid backlog in general, a spokesperson said.

Meanwhile, Counties Manukau DHB is dealing with big spikes in women turning up to hospital with acute gynaecological conditions.

It comes a year after it was revealed women were being turned away for routine specialist appointments because hospital was too busy to see them.

A report to the board by a senior doctor said there had been regular spikes in women needing urgent care over the past few months - for increasingly complex conditions.

But a spokesperson for the DHB said there had always been peaks and troughs - and it could be because women tend to seek care for others in the family before themselves.

It was looking into creating more convenient appointments.

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