Originally Published on Stuff: December 09, 2023
After four miscarriages and a GP referral to Gisborne Hospital for suspected endometriosis, Olivia Shine had hoped that by now Hauora Tairāwhiti would have referred her to a fertility clinic and looked into whether she has endometriosis.
However, 18 months later, the 28-year-old Gisborne woman is still waiting. Instead, Hauora Tairāwhiti operated on Shine for a uterine septum resection: surgery to remove tissue that was dividing her uterus into two cavities.
Shine has, to date, experienced seven pregnancy losses. She and her partner, Callym Windybank have been trying to conceive for more than two years.
“The ‘when we have kids’ conversations changed to ‘if we have kids’,” says Shine.
A consultant gynaecologist for Hauora Tairāwhiti did diagnose Shine with polycystic ovary syndrome (PCOS), which was treated with medication. Shine said the same gynaecologist told her that pregnancy cures endometriosis symptoms.
Olivia Shine and Callym Windybank’s “when we have kids” conversations have changed after losing seven pregnancies.
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The chronic condition, where tissue similar to the lining of the uterus is found outside the uterus, can cause severe pain, menstrual irregularities, infertility and secondary pain conditions.
Since puberty, Shine has suffered from chronic pelvic pain, nausea and fatigue. It’s taken a toll on her mental health, and intense pain has robbed her of activities she used to enjoy, like exercise and socialising.
“You can be good one second, just standing there smiling with no pain, and then within a minute, it’s like the life has been wiped out of you.”
Forced to leave her job due to the pain, Shine now relies on her partner for financial support.
Meanwhile, she’s still waiting for the hospital to act on her GP’s referral and her own requests for further investigation into suspected endometriosis.
Since her referral in May 2022, she says she has only been offered hormonal contraceptives which are not suitable for her long-term needs.
Shine would like laparoscopic surgery, which is typically used to obtain tissue samples for a conclusive diagnosis.
To date, the hospital has not acted on Shine’s requests for further investigation into the suspected endometriosis which her GP originally referred her for.
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In March this year, Shine realised that she was eligible for publicly funded fertility treatment and referred herself through her GP.
By the second consultation, the fertility specialist, who was based in Wellington, put Shine on a surgical waitlist at Wellington Hospital for a laparoscopy with excision of endometriosis along with a hysteroscopy and septum resection.
With a 500km trip to Wellington Hospital from Gisborne on the horizon next year, Shine is fundraising for the costs of her accommodation and travel to Wellington.
Disappointed by the discrepancy in services between Wellington and her hometown, Shine filed a complaint to Te Whatu Ora.
The head of the department forobstetrics and gynaecology at Gisborne Hospital responded that “a laparoscopic examination is no longer considered best practice and endometriosis is treated medically”.
“Medical management of endometriosis usually involves long-term cycle regulation. This is usually done with some sort of birth control… Women with endometriosis typically need medical management of their symptoms for most of their reproductive years.”
Shine was disappointed by the response. “The emotional distress caused by the prolonged struggle to access appropriate care and the dismissive attitude of the healthcare system has been overwhelming.”
Deborah Bush, who is the founding principal of the World Endometriosis Organisation, was surprised to read the response.
She said it contravened nationally and internationally respected guidelines on endometriosis.
Deborah Bush MNZM, QSM co-founder and former chief executive of Endometriosis New Zealand, said Te Whatu Ora’s response to Shine’s complaint contravenes respected clinical guidelines.
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“Best practice now includes a multidisciplinary approach to treatment and involves management options best suited for the patient’s needs.
“This letter seems to disregard those options, offering instead, a clinician-led, one-size-fits-all medical-only approach.
“Further, if the patient has been trying to conceive, offering long-term ‘birth control’ for ‘most of their reproductive years’ is heartless and dismissive of their fertility needs.
“The letter disregards those who cannot tolerate hormone therapy or do not wish to take it and ignores a person-centric approach to care which also considers identity and culture,” said Bush.
“These aspects are fundamental to Aotearoa New Zealand’s health reforms.”
Bhargav Srinivasan, interim hospital lead for Te Whatu Ora in Tairāwhiti, said “we’re confident that our staff have acted appropriately and in the best interests of the individual concerned at all times and will continue to do so should the patient seek further care”.
Srinivasan said the team “provides care to women with endometriosis that is consistent with New Zealand’s guidelines and standards of care” and that Bush’s criticisms seem to have misunderstood the intent of the response, which was that “surgery is generally not recommended for the sole purpose of diagnosing endometriosis.
Shine has only been offered hormonal contraceptives to manage endometriosis symptoms despite wanting to conceive.
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“Additionally, we were making the point that medical management… is often beneficial for many women. Our comments were in no way limiting the individual’s options for care.”
Eighty per cent of patients with the condition have either Stage 1 or 2 endometriosis, which can be managed by most gynaecologists in New Zealand, either medically or surgically.
Though Gisborne Hospital does not have any endometriosis specialists or advanced laparoscopic surgeons, Srinivasan said “all of the senior medical officers at Gisborne Hospital are trained to care for most women with endometriosis and are competent laparoscopists.
“If a fellowship trained laparoscopic specialist is required, the patient will be referred to another facility.”
Dr Michael Wynn-Williams, Endometriosis New Zealand board member and clinical adviser, said “in the absence of dedicated endometriosis specialist services, it is essential to establish referral pathways to centres with expertise in endometriosis care.
“With the transition to Te Whatu Ora, these endometriosis care networks still need to be clearly established.”
Dr Michael Wynn-Williams is an advanced laparascopic surgeon and board member of Endometriosis New Zealand.
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Wynn-Williams is advocating for a New Zealand Endometriosis Action Plan, creating regional centres of expertise so that individuals like Shine can access timely and specialised care.
For Shine, the struggle to maintain friendships and a career, the miscarriages, and development of PTSD are some invisible costs associated with delayed investigation.
“It can be tough when you’ve been living with symptoms for years, thinking they’re normal, and then you’re told by a medical professional that there’s nothing wrong with you and are only offered birth control. You start to believe it,” Shine said. “You wind up in this strange space of self-doubt, fear, and insecurity.
“If I am lucky to be a mother, I would cherish that role more than anything else in the world.”
At least 1 in 10 women have endometriosis, yet on average, there is an 8.7 year delay and five doctors are seen before a diagnosis.
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