R&D in endometriosis is painfully slow

Despite affecting an estimated 10% of women, girls and individuals with a womb, of reproductive age worldwide, progress in the field of endometriosis is moving about as fast as traffic on the M25 at rush hour.^1,2

There has been an increasing interest in the history of endometriosis across the past two decades.³ Yet, while global campaigns and patient advocacy groups for endometriosis have raised some awareness and provided some support, and there is work underway to find additional therapies that can help to manage the symptoms of endometriosis, waiting times still average 7.5 years for a diagnosis.⁴ This leaves endo sufferers asking: “what’s currently being done to improve diagnosis waiting times and find working treatment?”.^5-8

A brief history of endometriosis research and development (R&D)

Evidence from Ancient Egyptian scrolls present the first recorded description of endometriosis-related symptoms as a “painful disorder of menstruation”.⁹ However, it wasn’t until the 1920s that endometriosis was recognised as a clinical entity worthy of medical consideration.^10-13 Following that, the disease was incorrectly considered as more prominent in women that have children in later life, and so endometriosis was largely viewed as a career woman’s iillness.¹⁴

Early-day clinicians were stumped when it came to managing the disease, which led to the ‘prescription’ of childbirth as both a prevention and treatment strategy; under the misperception that absence of menstruation during pregnancy reduces symptoms.^14,15

Understandably, childbirth wasn’t and isn’t a practical means of treatment for all those affected. Therefore in 1956, one researcher proposed a more feasible alternative; the prescription of oral contraceptives to mimic the state of pregnancy in endometriosis sufferers; to recreate the improvements in endometriosis brought on by gestation, which is still used in practice today.^16-17

Around the same time time, gynaecological surgical techniques began to aid investigation of gynaecological diseases.¹³ And the introduction of the laparoscopy in the 1960s aided the classification of the three different types of endometriosis: peritoneal endometriosis, recto-vaginal endometriosis (between the rectum and vagina), and ovarian endometriosis (around the ovaries).¹³

By the early 1970s, the modern laparoscopy was the preferred tool for diagnosis and surgery of endometriosis, and is the same technique is still currently used today, even though further research is still needed to consider the management of different subtypes of endometriosis and to compare laparoscopy with lifestyle and medical interventions.^13,18

Admittedly, humanity has had to endure two world wars, numerous recessions, and a pandemic since the clinical recognition of endometriosis in the 1920s.¹³ We’ve managed to put people on the moon and a robot on Mars in that time, so, why haven’t we been able to allocate more funds towards endometriosis R&D, and what, of the limited information we currently have about endometriosis diagnosis and treatment, do we actually know?

What’s currently going on?

Well, currently, we still have no cure for endometriosis.¹⁹

What we do know is that endometriosis lacks specific symptoms, which makes diagnosis difficult.^12,20 There is also no satisfactory therapy available that tailors to all those struggling with endometriosis.¹² Instead, treatment for endometriosis is made up of over-the-counter medicines, such as non-steroidal anti-inflammatories (NSAIDs), hormone therapies, and in last-case scenarios, invasive surgery; none of which come without risk.¹⁷

Research has suggested the use of combined hormonal contraceptives alone to try to control the symptoms of endometriosis, though data is limited, and more research is needed to comprehensively evaluate their role as a potential treatment.^17,21-23

More recent studies have identified that endometriosis may have some association with pelvic floor muscle tone, suggesting a need to consider the role of the pelvic floor in the understanding of endometrial pain.²⁴ Pelvic floor physiotherapy has been shown to be an effective, non-invasive treatment that provides symptom relief for those with endometriosis associated with chronic pelvic pain, though as usual with endometriosis treatments, further research is required to confirm these findings before they can be widely implemented.²⁴

New research has also gone into identifying the reasons endometriosis occurs in the first place. This includes looking at the genes associated with the condition, how sexual and physical abuse can increase the risk of endometriosis, and the potential link between environmental toxins and the reproductive system.^25-27

Yet, despite the above findings, only a handful of somewhat-effective management options are actively available, and some women are left considering a hysterectomy in order to find effective symptom relief.^28,29 While hysterectomy comes with some benefits, such as the cessation of more periods and effective birth control, it comes with a far greater list of drawbacks that can affect quality of life, desire to have children and, depending on the type of hysterectomy:^30,31

• Pain during sex and a limited libido³²
• The potential for organs to slip out of place³³
• Surgical complications³⁴

And, to top it off, there still is some risk for disease recurrence, despite removing most or all of your reproductive system.³⁵

Why has progress stagnated?

It’s near impossible to pinpoint the exact reasons as to why progress in endometriosis diagnosis and treatment moves at a snail’s pace, though ignorance and a lack of funding are the biggest contributors to a scarcity of treatment options.^{14, 36}

The U.S. National Institutes of Health found that in the case where a disease affects primarily one gender, funding is allocated in favour of men: female-specific diseases are underfunded and diseases that affect more men than women are overfunded.³⁶ The UK Health Research Analysis of 2018 also found that just 2.1% of research funding was given to reproductive health and childbirth.³⁷

One focus group study, which set out to identify the strengths and weaknesses in current diagnosis process for endometriosis from a patient’s point of view, concluded that the reasons for a lack of adequate diagnostic tools, and consequent lack of management options, were due to a cluster of factors, namely:³⁸

• Delays between the onset of symptoms and first visit to the doctor, and between the first visit to the doctor and referral to a specialist
• Referrals to the wrong specialist because of the lack of specificity in endometriosis symptoms
• Lack of acknowledgement from GPs, friends, and relatives of the affected individual’s symptoms of endometriosis being that of a chronic condition

To move forward we must develop quicker routes to diagnosis and more effective treatment options for endometriosis sufferers.³⁹ Alas, gender disparities in research are abundantly clear.

‘Patient’ heroes

A 2016 review noted that of the 750 online pages available that mentioned endometriosis, not a single page provided information assessed as written in plain English.⁴⁰ And, with over 30,000 people in the UK searching the term “endometriosis symptoms” every day (according to Google Chrome’s Keyword Surfer plugin), it begs the question as to how much of information found online and understandable to the layperson is credible.

In short: barely.

The same 2016 review found that of 54 internet pages selected for consideration, almost half failed to include reputable sources; raising questions about the content’s authority.⁴⁰ Nonetheless, the abundant searches for endometriosis and related phrases, indicates that awareness is on the increase. More and more people with endometriosis have also found the courage to speak up about their condition on social media, and celebrities such as Robert Irwin have continued to advocate for endometriosis funding, which has helped shine a tremendous light on the topic.

However, patients continue to rely on the World Wide Web for support. The dismissal of patients’ symptoms have forced those struggling with the disease to turn to patient advocates and social media for help.5,⁴¹

Positively, research shows that being a part of an online support group can be beneficial in improving the overall wellbeing and quality of life of an individual with a chronic condition.⁴² And social media has also allowed those with endometriosis to recognise that they’re not alone, allowing them to benefit from other people’s experiences and support.⁴¹ However, given the lack of credibility found in many online pages, patients seeking help may be subject to misinformation that in itself can pose a risk.^40,41

One giant leap for man, one gigantic stumbling block for women

People with endometriosis continue to face frequent dismissal of their symptoms, while having to endure an average delay of 7.5 years for a diagnosis.^4,14 If we are to address the critical gaps that remain in our understanding of endometriosis, women’s health must be recognised as an equally pressing topic as men’s.

The first steps are easy; we can start by providing the correct information to both GPs and the public to help facilitate the right management processes at the right time, and improving awareness about the disease to propel much needed R&D funds. People who suffer with endometriosis should never be the patient’s patient, and going forward, we need to ensure they won’t need to be.

References