Endometriosis is notoriously under-researched, with very limited understanding and treatments as a result. But a new study has explored a new yet necessary angle — the effect of endometriosis, a condition affecting the female reproductive system, on cisgender men.
What is endometriosis?
Endometriosis is a chronic condition in which tissue from the uterine lining, known as the endometrium, grows outside the uterus, such as on the ovaries, fallopian tubes, and even outside the reproductive organs in the bladder, bowel, and lungs.
It is not a rare disease. Globally, 400 million people live with endometriosis — that’s more than people living with HIV, cancer, epilepsy, Parkinson’s, and dementia combined. Yet, the latter diseases are much more publicly acknowledged and understood than endometriosis. Approximately 1 in 10 women are affected; however, with ongoing research and increased understanding and awareness of the symptoms, diagnoses are steadily increasing. Symptoms include inflammation and scar tissue formation, along with heavy periods and severe pelvic pain. Although the range of symptoms varies from mild discomfort to debilitating day-to-day suffering, it is evident endometriosis is yet another struggle many women have to fear and face.
The history of endometriosis research on women
Ancient Medicine
Endometriosis is widely misinterpreted, misdiagnosed, under-researched, and under-treated. However, this is not because endometriosis is a new disease — in fact, it is considered ancient, originating from the dawn of the primate uterus. Ancient texts, dating back to ancient Egyptians, Greco-Romans, and the medieval period, note symptoms similar to endometriosis. At this time, endometriosis was referred to and dismissed under many names: hysteria, wandering womb, working women’s disease, dysregulated vapours, and strangulation/suffocation of the womb. The uterus was seen as its own entity within the female body, and pelvic pain signified a “hungry womb”, desiring to be pregnant; women were prescribed marriage and pregnancies to combat this pain, even though endometriosis increased the likelihood of miscarriages. Women were notoriously blamed for their pelvic pain, either because of their abstinence or immorality — a symptom of the “curse of Eve” to endure pain during childbirth and menstruation. This often led to punishments such as abandonment, exile, and even execution. The ancient Greek “father of pharmacognosy”, Pedanius Dioscorides, suggested bed bugs, brains, and human urine to manage the pain, showing even the most brilliant minds relied on bizarre and ineffective remedies.
Medicine of the Middle Ages
During the medieval period in Europe, pelvic pain was even attributed to witchcraft and demonic possession, which was tackled with prayer and torturous treatments — exile, exorcism, execution, and choking women’s necks. In Asia, however, Muslim medical practitioners catalysed the evolution of scientific medicine, eventually spreading throughout Europe, although the influence of demonology remained prevalent.
Early Modern Medicine
The early 17th century walked the tightrope between old and new medicine. With the sustained belief religion, demonic possession, and witchcraft influenced endometriosis, the progress of medicine for women regressed; what was originally viewed as gynaecologic disorders shifted into psychological disorders. Women writhed in pain, often throwing themselves against the floor and having suicidal thoughts. This was viewed as hysteria, and between 22 to 40 thousand women were burned at the stake for this. William Harvey, a pioneering English physician, speculated spoiled menstrual blood and sexual abstinence were the cause of pelvic pain, thus reinforcing the importance of marriage. Although he encouraged the misogynistic stigmas, Harvey was the first to observe a correlation between uterine ulcers and hysteria, paving the way for understanding pelvic pain. Gynaecology began making more medical milestones: in 1809, the “father of ovariotomy”, Ephraim McDowell, surgically removed tumours on the ovaries, and only a couple of years later, the first vaginal hysterectomy, a procedure to remove the uterus from the vagina, was successfully conducted. In the 1830s, post-mortem studies showed the physiology of women with pelvic pain, observing uterine growths outside the uterus. However, at the time, science took a step back as the globally popular Sigmund Freud blamed women for their ailment, labelling it as “hysteria”. It wasn’t until the late 17th century, the first clinical diagnosis was established by Austrian pathologist Karl von Rokitansky, who microscopically identified endometrium outside the uterus, terming it “cystosarcoma adenoids uterinum”. Despite his misinterpretation of endometriosis as cancerous, he was the first to separate endometriosis as its own condition from the vague umbrella of “pelvic pain”. The 1880s saw medicinal methods develop, including leeches on the cervix, morphine, enemas, and excision surgeries. Hysterectomies to remove the uterus were also in operation; however, 15% of surgeries ended in death. Laparoscopic procedures — keyhole surgery to observe and diagnose endometriosis — became popular, but as the severity of pain does not equate to the severity of endometriosis physiology, surgeons often did not see anything in women who were in immense pain. Because of this, hysteria was plastered on as the diagnosis.
Modern Medicine
In the early 20th century, gynaecologist John Sampson systematically described the pathogenesis and coined its modern name — “endometriosis”. However, research took a dramatic halt as doctors were not interested in this research, largely due to how difficult it was to cure, but also because it did not affect them. To put this into context, at the same time as open heart surgery, X-rays, aspirin, and vaccines were coming into fruition, gynaecology was still so underdeveloped that we didn’t even have the first tampon until the 1920s. At the end of the 1930s, uterine tissue was observed in many organs outside of the uterus, including the lungs. Hormonal birth control, such as the pill and IUD were used in the 1950s to mask the symptoms, but this was only accessible to white upper-class women. Advanced laparoscopic techniques were popularising, but symptoms were still seen as a trick of the mind, rather than a very physical issue.
Today, birth control and laparoscopy procedures are the gold standard and widely used for women with endometriosis. Alas, treatments have remained stagnant since ancient times; still, no cure has been found. The history of endometriosis is rich and essential for understanding the weight of current research.
Why is endometriosis research limited?
Endometriosis is a biologically complex condition, influenced by genetics, hormones, and the immune system. There is no simple biomarker, and as laparoscopic procedures are needed for a definitive diagnosis, screening and longitudinal studies in patients are very difficult to conduct. There is no viable animal model to replicate the human condition, as endometriosis is almost exclusively found in primate uteruses. Non-human primates can be useful to study pathology, but there are many logistical and ethical constraints.
That being said, the difficulty of research is not the only issue. As highlighted by its history, there is a vast societal stigma surrounding menstrual pain, which has enforced a gender bias in women’s health. A small fraction of research budgets is directed to studying women’s health: in 2020, only 5% of global research and development funding was allotted to research into women’s health, with only 1% on non-cancerous conditions such as endometriosis. This makes women’s health one of the most severely underfunded and under-researched areas in medicine.
The study into the effects of endometriosis on men
Although a chronically underfunded condition, the Economic and Social Research Council scraped enough precious funding towards the illuminating investigation on the effects on heterosexual cisgender men.
To start on a positive note, they did acknowledge endometriosis is debilitating for women. But the main symptom listed was a negative impact on sexual function and strain on intimate relationships, sometimes leading to a relationship breakdown, which is far more excruciating than suicide-inducing pelvic pain.
This qualitative study focused on 22 women living with endometriosis and their male partners in the UK. Each woman had a laparoscopic diagnosis with symptoms spanning over a year, and lived with their male partner. Methods included face-to-face, semi-structured interviews with partners together and separated.
The results showed endometriosis has significantly impacted men across several life domains: sex and intimacy, planning for and having children, and working lives and household incomes. Notably, men’s working life and household income were significantly affected as they felt endometriosis made demands on their ability to be the “breadwinners”; their paid work was impacted due to accompanying partners for consultations, undertaking extra childcare, and housework when partners were feeling unwell or recovering from surgery. In sickness and in health, right?
Overall, the researchers highlighted endometriosis negatively impacted men’s emotional wellbeing and strained their intimate relationships. They are compromised by the lack of support available to men, noting they are marginalised in endometriosis care. Take a moment to let that sink in. I think it is fair to say women are also marginalised in endometriosis care. Men, you’re not alone.
The discussion of this study pushes for healthcare practitioners to take a couple-centred biopsychosocial approach, including men in treatments, who are so burdened by their partners’ suffering from endometriosis. They suggest their findings show the need for information and support resources for partners and couples, which can be beneficial in educating partners in supporting their partner living with endometriosis — not the other way round.
Why is this study an issue?
Gynaecology, as stated before, is incredibly underfunded and under-researched, lagging behind all other clinical medical specialities. Directing grant funding towards a fairly unaffected population limits not only scientific research and progress but also the development of diagnoses, treatments, overall wellbeing, and de-stigmatisation for women with endometriosis. This study piles additional stigma and prejudice onto women, who are already being shamed and blamed by society since ancient times. For centuries, women have endured misogynistic, degrading, dismissive labels and treatments, from being accused of hysteria and witchcraft to being executed and strangled. With new irrelevant studies investigating the troubling effects on men, and others studying the attractiveness of women with endometriosis, we are doomed to repeat the regression of scientific progress on endometriosis, like we have seen countless times since its ancient history.
Although I would be wrong to claim that all men are not affected by endometriosis — there is a higher rate of endometriosis in transgender men than in cisgender women. Therefore, research into the effects of men should focus on the populations that actually matter. Generally, studies on men oversaturate research with issues such as male pattern baldness and erectile dysfunction. Between 2019 and 2023, companies focusing on erectile dysfunction received six times more funding than companies focusing on endometriosis. Of course, these male-related conditions can impact mental wellbeing, but they are not as dire as women in debilitating pain from gynaecological issues that have barely scraped the surface in research.
We need to direct funding, time, resources, and compassion towards researching, understanding, and treating women’s health. Global scientific progress cannot occur if a fundamental area of medicine is neglected.
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