Covid 19 coronavirus: Hundreds of women desperate after endometriosis treatment cancelled

Ali Richards faces a seven month wait to see a specialist for treatment of her endometriosis because of the backlog caused by the Covid-19 lockdowns. Photo / Supplied

More than 500 women who suffer from endometriosis were left desperate for help during lockdown, with many facing cancellation of surgery or specialist consultations.

Even as the country returns to normal, the backlog caused by Covid-19 is such that many of those women will have to wait months for the treatment they need.

Endometriosis New Zealand chief executive Deborah Bush said that during the seven-week lockdown alone the organisation received cries for help from 568 women, far more than usual, with some suicidal because they were struggling to deal with their condition.

"Some were completely broken due to their long-awaited surgeries being cancelled with no rescheduling date in sight, while others were too scared to seek help for their painful symptoms at hospital emergency departments."

One woman who contacted Endometriosis NZ during lockdown said, "I'm at my wits' end. The hospital told me I can't be seen in Covid lockdown and won't be able to have surgery. I've already waited years. My symptoms are so bad I've lost my job, my relationship, my friends, my home. I'm nearly 30 and am back living with my mother. I now have severe depression."

Another told the organisation, "The pain feels like my kidneys and my insides are being stabbed. It never goes away and now my surgery has been cancelled. There's no end to this and my mental health is stuffed."

Endometriosis is a common inflammatory disease which occurs when tissue similar to the lining of the uterus is found in places outside the uterus. It affects roughly one in 10 women in New Zealand and symptoms include severe period pain, pelvic pain, bowel and bladder problems, abnormal menstrual bleeding and fertility issues.

Ali Richards, 37, is one of those feeling the effects of the backlog created by the Covid-19 outbreak and subsequent lockdown.

The Auckland woman has had severe symptoms since she was about 20 but it was not until 2017 that she was finally diagnosed with endometriosis.

"It took nearly 17 years to get a proper diagnosis and not get fobbed off and told, 'you're a drug addict' or 'it's all in your head'," she said.

Ali Richards ended up hospitalized last month because of the pain caused by her endometriosis. Photo / Supplied

Since then she has had three surgeries to remove the endometriosis, including a total hysterectomy and the removal of one of her ovaries, the most recent in December last year.

While those have helped, the endometriosis has continued to grow back, causing her pain to worsen again.

During lockdown she managed to have an over-the-phone consultation with her gynaecologist who said she would like to see her in person again to see if pelvic physiotherapy and a nerve block could help her cope with the pain.

Weeks later she had heard nothing about when her appointment would be and after pushing her GP to follow up she was told the specialist, employed by the Waitematā District Health Board, could not see her until November.

When she questioned the seven-month wait time, her GP told her it was most likely because of a backlog caused by the lockdown.

In the meantime, she has to do what she can to manage the crippling pain which saw her hospitalised for two days last month.

"I'm trying to do other things to manage the pain," Richards said. "I came to the conclusion 10 years ago that I'm just going to have to live with it.

"If it wasn't for my daughter and my new husband I don't think I would be where I am today."

A Waitematā District Health Board spokesman said the organisation had worked hard to reduce the number of women waiting for gynaecology treatment during Covid.

"As a result of running additional clinics, we currently have only 10 people waiting
outside the Ministry of Health target of four months for a first specialist assessment.
In the context of a service averaging 650 new referrals per month, this is a demonstration of our commitment to addressing women's health needs," he said.

"The number of women waiting outside of the Ministry of Health target of four months on our gynaecology surgical wait list has more than halved since June. We are adding extra Saturday theatre lists starting in October and expect that, by the end of December, all women accepted for treatment will receive surgery within the Ministry of Health target time."

Bush said that while the cancellation of surgeries and the backlog that caused were unavoidable, the situation was made worse by the Ministry of Health's "failure" to support and fund the implementation of the Clinical Guidelines for the Treatment of Endometriosis, which was launched at Parliament in March.

The guidelines aim to provide health professionals with the information needed to diagnose the disease early and treat it in the most effective way and educate young women about the symptoms so they can seek help earlier.

"This lack of ministry follow-through has delayed the prospect of more timely diagnosis and best-practice treatment for the 130 thousand New Zealand women and girls living with this debilitating disease.

"Endometriosis takes eight years on average to diagnose, with some patients as young as 10 and 11. Once picked up, it's absolutely vital that treatment is appropriately tailored to the individual patient with doctors empowered to 'Think Endo First'."

A Ministry of Health spokeswoman said the guidelines had been published on the ministry website, been disseminated through DHB clinical directors of obstetrics and gynaecology and provided to members of the Royal New Zealand College of General Practitioners through their ePulse communication. The guidance has also been shared with Health Pathways, an online manual used by clinicians.

"The ministry strongly encourages all relevant healthcare professionals to familiarise themselves with the guidance so they can incorporate them into their care," the spokeswoman said.

Bush said funding was needed to roll out their education programme to schools across the country and continue to provide support for those who contact the organisation for guidance. She was disappointed Endometriosis NZ's application for a slice of the Ministry for Women's $1 million Covid-19 Community Fund was unsuccessful.

Specialist endometriosis gynaecologist and Endometriosis NZ life member Michael East agreed.

"Published data shows 27 per cent of young Kiwi girls are missing school every month due to their symptoms, which interferes with their education, limits their future careers, risks their mental health, future fertility and their ability to maintain employment and contribute to society."