Landmark Nationwide Study Offers Wake-Up Call For Endometriosis And Chronic Pelvic Pain Healthcare

A large-scale survey, with respondents across Aotearoa New Zealand, has brought to light the significant impact on quality of life and diagnosis delay for those suffering from endometriosis and chronic pelvic pain. 
 

Study findings published this week have revealed the profound impact endometriosis and chronic pelvic pain are having on women’s lives across Aotearoa New Zealand – including their education, career, sex life, whānau relationships and mental health.

The study ‘An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain’, gathered the experiences of 800 women and those assigned female at birth with chronic pelvic pain and endometriosis, making it the largest national study of its kind. Notably, Māori participants of the study reached parity with Aotearoa New Zealand’s Māori population.

Endometriosis occurs when tissue similar to the lining of the uterus is found in places it shouldn’t be, mainly in the pelvis, although occasionally in other locations such as the diaphragm. Endometriosis has a wide range of symptoms and is the most common cause of chronic pelvic pain (CPP).

Deborah Bush (MNZM, QSM), Endometriosis New Zealand founder, and pelvic pain coach and consultant, says, “A prevalent, painful, and often debilitating condition, endometriosis affects 1 in 10 women across Aotearoa New Zealand, making it a major public health issue. The impact it can have on all aspects of a person’s life — socially, physically and mentally — cannot be overstated.”

While research into the causes and effects of both endometriosis and CPP are being increasingly explored in Australia and worldwide, until now there has been scarce current data on the impact of these conditions and diagnostic delay here in Aotearoa New Zealand.

Using the World Endometriosis Research Foundation (WERF) EndoCost tool, an online cross-sectional survey was used to explore the impact of chronic pelvic pain on the social, sexual, occupational, financial, and educational aspects of overall quality of life for women in Aotearoa New Zealand.

The survey also looked at how long it took to reach diagnosis for those individuals with endometriosis, and to unpack details surrounding this process. Participant responses showed that it took an average of almost nine years, and five doctor visits, before formal endometriosis diagnosis. However, the good news is that this delay is decreasing, with those being diagnosed more recently receiving their diagnosis around two years.

“Endometriosis and associated pelvic pain are often dismissed or not taken seriously.” says Dr Mike Armour, senior author of the study, Senior Research Fellow at Western Sydney University’s NICM Health Research Institute, and World Endometriosis Society Ambassador. “We know that diagnostic delay for endometriosis in Aotearoa is reducing over time, attributed to a combination of improving menstrual health education via programmes like the menstrual education (me™) programme in schools, more advocacy and greater awareness by health professionals — but swift access to appropriate healthcare support is crucial.”

The study shows that significant negative impact was demonstrated in all domains of respondent's lives.

Around two thirds of survey participants reported that pelvic pain had caused problems with their partner or affected their sex life, and over half reported it impacted their friendships and social time with whānau. The majority of participants reported a serious effect on their employment with over 70% having lost a job, changed their job or reduced their working hours due to symptoms. Education was also impacted with the majority of participants reporting days off school, changing courses or delaying exams and assignments, or giving up study altogether.

The survey findings show a high prevalence of pelvic pain symptoms, whether participants had a formal diagnosis of CPP or endometriosis or not, with an extremely negative impact on their overarching quality of life, often from the time of their first menstrual period or during their teens.

“It is clear from these results that chronic pelvic pain is a serious health issue deeply affecting quality of life for many and demonstrating a pressing need for the health system and society to respond,” says Dr Jordan Tewhaiti-Smith, MRINZ Clinical Research Fellow, and study lead. “Given an estimated quarter of women and those assigned female at birth suffer chronic pelvic pain to some degree during their reproductive years, our study highlights a significant and concerning burden for individuals, their whānau, wider society and public health services. Okea ururotia – we must keep pushing for change.”

This study was undertaken by a collective committed to women’s health, comprising the Medical Research Institute of New Zealand (MRINZ), Endometriosis New Zealand, Auckland Gynaecology Group and Repromed, Canterbury District Health Board, University of Otago, University of Auckland, Te Herenga Waka — Victoria University of Wellington, Oxford Women’s Health at Forté Health, and Western Sydney University’s NICM Health Research Institute and Translational Health Research Institute.

Dr Tewhaiti-Smith says, “The interest in our study was incredibly strong, shown by both the commitment of our collaborative research team and high participant numbers, demonstrating that there is huge motivation to enact systemic change across the community of individuals living with CPP, and those dedicated to supporting them.”

March is International Endometriosis Awareness Month, so this study publication is extremely timely.” says Deborah Bush, “We strongly encourage healthcare practitioners, policy makers and health services to take urgent action. Implementing the ‘Clinical Pathway for the treatment and Management of Endometriosis in New Zealand’, launched in 2020, is one clear way to immediately improve health outcomes for all those living with endometriosis and chronic pelvic pain.”

Dr Armour says, “Our study has highlighted the high priority need for further research into the experiences and requirements of those with chronic pelvic pain and endometriosis in Aotearoa. Without investment in research, and a commitment to prompt diagnosis, people with CPP and endometriosis will continue to face barriers in accessing the treatment and support they need to best manage their health and ensure greater quality of life.” 
 

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