Amicus Curiae: Endometriosis: The Hidden Epidemic – a dire need for funding in New Zealand?

By Milly Sheed

Endometriosis: an exclusively female disease that we as a country know virtually nothing about. Affecting 1 in 10 women, endometriosis is a chronic gynaecological condition that is, as yet, incurable. With unacceptable diagnosis times, limited and invasive treatments and minimal knowledge on where it even comes from, women across New Zealand continue to battle the detrimental affects of the disease. Despite the alarming statistics, intensive research and treatments for endometriosis receive zero funding from the government.

Endometriosis is chronic in nature and destructive in its impact on the physical, mental, social and sexual wellbeing of the sufferer. The symptoms of endometriosis affect women from puberty, and remain with them throughout their entire reproductive years. The condition occurs when “…tissue similar to the lining of the uterus (endometrium)… is found in places outside of the uterus. The tissue can form nodules or plaques…” Usually occuring in the pelvic region, endometrial tissue can sometimes spread and grow on organs such as the bowels, bladder or the ovaries – causing severe period pain, bowel problems, infertility, chronic tiredness, abnormal bleeding and painful intercourse. Endometriosis can also lead to an array of secondary issues, such depression and anxiety.

Disgracefully, endometriosis has gone undetected for hundreds of years, due to the technicalities involved with its diagnosis. Treatment is expensive, incredibly invasive, and often not adequate to ease the copious amount of symptoms. The majority of sufferers opt for laparoscopic (keyhole) surgery, which is the only means by which doctors are able to find, and accurately diagnose, the disease. The aim of the surgery is to remove the rogue endometrial tissue through cutting and burning, and eventually alleviate symptoms. In extreme cases of endometriosis, the entire uterus or ovaries may be removed. However, endometrium can still continue to grow and spread.

Despite the severity of symptoms, women who suffer from endometriosis are often left to battle their chronic pain for years, before receiving treatment or even acknowledgement of their pain. It is commonplace amongst sufferers to face disbelief from their GPs, causing unacceptable delays in diagnosis. In fact, it can take between 8-11 years to be diagnosed with endometriosis. For such a common gynaecological condition, this figure is unsatisfactory and entirely unnecessary in countries like New Zealand with the fiscal means and professional ability to devote time and research to the disease.

Uncovering the biological roots of endometriosis is essential to minimise the effects, which go far beyond mere physical discomfort. The disease can permeate into all aspects of sufferers’ lives: impacting relationships, interfering with income and hindering quality of life. In this way, the disease directly disadvantages a woman’s access to the opportunities that a healthy life allows. In this regard, our government should not be settling for such inequality. Endometriosis also causes a dent in the structure of our society, as employers and educators face the challenge of low productivity, with absences becoming an unavoidable occurrence for women and girls with endometriosis. Fiscal ramifications also present a red flag, with the burden of endometriosis treatments costing the public health system an estimated $1 billion per year. Could this money be more effectively apportioned, not only to advantage sufferers, but to directly address the source of the problem? It’s an easy answer.

Despite endometriosis being one of the world’s most concerning female health problems (with 176 million women suffering worldwide), it is rarely discussed and much less understood. This could be because our society is generally not comfortable with talking about periods. There is a serious discrepancy in our culture that asserts it is acceptable for women to experience pain, particularly during their periods. Deborah Bush, CEO of Endometriosis New Zealand ‘ENZ’ (an organisation providing women with free education and support which receives no governmental funding) claims, “…it is the one of the last remaining taboos of modern medicine”. In the wake of our current political landscape and the endorsement of movements like #MeToo, we are finally deciding to listen to women and believe their stories. It is now more important than ever for women’s issues to be heard, and government pitfalls to be examined.

Recent landmarks may perhaps offer fresh hope for women with endometriosis in New Zealand. With the new female-led government in power, endometriosis has become a direct investigative focus for the Associate Minister for Health, particularly how it seriously encumbers the lives of those women who suffer from it. As well as this, ENZ has established a Task Force to team up with the government in order to address various issues relating to the disease itself, as well as research into its origins and treatments that can hopefully reach and work for a higher percentage of women.

There is unquestionably a failure on the part of our government for action on endometriosis. Consequentially, it has become an uncontrollable burden on our health system, as well as on the lives of the women who suffer from it. Underlying this, however, is our latent failure as a society to take female menstrual pain seriously. It is an insult to these women, who endure undue pain on a daily basis, to be told that it is simply their lot in life. One of the reasons for this could perhaps be that more medical research is done exclusively on male conditions, and there is a plain lack of female focus in medical research. All of this begs the question: what if endometriosis was a male condition? Would government action have occurred sooner?

Ultimately, endometriosis needs faster diagnosis times, as well as increased awareness from the community, employers and medical practitioners. This is the minimum sufferers expect, until the government chooses to step in. There is a particular need in New Zealand for a Specialist Multi-Disciplinary Treatment Centre dedicated to endometriosis, as in the UK, USA and Australia. For women with the disease, this would mean a centre devoted wholeheartedly to endometriosis: a place for women to be heard, diagnosis to occur swiftly, support to be easily accessible, and research into broader treatments and medications to be maximised.

It is hard to imagine how these women continue to lead normal lives keeping pace with the rest of society. Now is the time for governmental urgency, to listen to female voices and adopt a national strategy – so we can confidently say in ten years time that a diagnosis of endometriosis is no longer a life-sentence.

The views expressed in the posts and comments of this blog do not necessarily reflect those of the Equal Justice Project. They should be understood as the personal opinions of the author. No information on this blog will be understood as official. The Equal Justice Project makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. The Equal Justice Project will not be liable for any errors or omissions in this information nor for the availability of this information.