Endometriosis: Painless sex not a priority, but should it be?

Endometriosis
 

For women with endometriosis, a diminished sex life is a common complaint. Chronic pain, low mood, hormonal treatments, stress over fertility concerns, bleeding during or after intercourse all play their part in dwindling sex and intimacy, but none as much as dyspareunia – painful sexual intercourse.

Endometriosis, a condition that affects around 1.5 million women in the UK, has gained increased awareness in recent months. The often debilitating condition causes cells usually found in the lining of the womb to grow elsewhere in the body. The results are chronic pelvic pain, fatigue, bladder problems, heavier periods and dyspareunia. The effects of endometriosis on sex lives and relationships have received little airtime, until now.

A study recently published at De Montfort University explores the impact of endometriosis on heterosexual couples. Despite the title, which suggests the focus is on the impact on male partners, the study saw twenty-two couples interviewed and aims to explore the female, male and couple perspectives. The results offer a fascinating revelation into the impact endometriosis has on the emotional, sexual and financial wellbeing of couples, as well as their attitudes towards fertility challenges the condition poses. The study offers some much needed insight into endometriosis’ bearing on relationships with men. For some couples, it was clear that they had found no alternative way of expressing intimacy in the absence of an effective sex life.

The study points out the emotional impact the condition has on the partners of those with endometriosis. It calls for stronger support networks to be found in friends and families, but also in healthcare providers. Sex is not the only part of a relationship but as we all know, it is an important part. The report describes the impact of endometriosis on sex and intimacy as profound, with nearly half of the couples reporting sex to be non-existent or rare and most of the others reporting a reduced frequency of sex. Some of the men described their reluctance to initiate sexual intimacy, presumably interrupting genuine spontaneity and closeness.

In May, the James Lind Alliance published its top ten research priorities for endometriosis. Finding a solution to painful intercourse, however, was not featured on this list.

The list of ten questions was whittled down and ranked from almost 5000 concerns and frustrations of clinicians, patients and their carers, friends and family. None of these questions had already been answered by existing research, according to Professor Andrew Horne, who oversaw the research. This latter fact highlights how neglected and underfunded endometriosis research has been in the science and medical communities, especially given that endometriosis is as prevalent as diabetes in women in the UK.

Four of the top ten priorities concern curing and treating endometriosis, three concern improving the diagnosis process and the others concern fertility issues, managing the psychological impact and establishing what causes endometriosis. While painful intercourse and the emotional burden of it can arguably be vaguely included in one or two of these priorities, it seems distressing that such a large toll of endometriosis is not directly addressed here. ‘Painful sex did feature highly within the top thirty,’ says Horne, ‘clearly people feel that these other priorities that we’ve published are higher up on the agenda’. The De Montfort research demonstrates how disruptive endometriosis is on sex lives and relationships, so why have doctors, patients and their loved ones, chosen not to make it a research priority?

Stigmas and taboos around female sexuality potentially dampen a women’s likelihood to complain about painful sex to a doctor, or even their partner. Professor Horne, of the University of Edinburgh, argued that ‘it is partly ignorance that people don’t rate it as importantly as some other problems’. Misconceptions that it is normal for sex to hurt, as well as privacy concerns about such information leaving the bedroom, often result in women not looking for help with painful sexual intercourse.

‘Historically, women’s health has been underfunded,’ says Horne as he describes the two factors that have caused the lack of funding around endometriosis. The first reason being that women’s health issues have suffered from an institutional sexism when it comes to research funding, and the second reason being because endometriosis is a pain disorder – its effects are invisible.

While researchers are under no obligation to follow these ten priorities, funding bodies will take them very seriously when considering applications. This could potentially mean that any further research specifically into dyspareunia and endometriosis may be less likely to receive funding compared to other research areas covered in the priorities.

For younger women, less likely to have long-term partners, and women with same sex partners, much less is known about the impact of endometriosis on their sex lives and relationships. Knowing now that women with endometriosis not only have to deal with chronic pain and other physical problems associated with the condition, but that their romantic and sexual relationships are directly negatively impacted is a hard truth to swallow. As more is done to reduce the diagnosis time, which averages at seven years, it is possible that women, and their partners, will demand more attention to what has been a taboo part of an already enigmatic condition.

*Photo by Imani Clovis on Unsplash 

 

 

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Hilary Webb

Hilary Webb is a writer based near London. She enjoys writing about female health, literature and culture, and blogs about all of the above, including her own reproductive health here.  You can follow her on Twitter or Instagram