Background:

Endometriosis is a common gynaecological condition affecting around 10% of women of reproductive age¹.  Research shows that the average cost of endometriosis per woman per year due to direct and indirect healthcare costs is as high as €9,579 (approximately $12000AU)².  Despite the high prevalence and societal financial burden, there is limited awareness of the condition in the general public, which may contribute to significant delays in diagnosis of between 7 and 10 years³.  Little research has been directed at the impact of endometriosis on couples and families, however there is some data indicating the diagnosis can have a significant effect on intimate relationships.

Aim:

The aim of this study was to explore the understanding of endometriosis in the general public and to explore the understanding and impact of endometriosis on the partners of women who have a surgically confirmed diagnosis of endometriosis.

Design:

Qualitative survey of 50 partners of women with histologically confirmed endometriosis, and a qualitative cross-sectional survey of 200 people of the Australian general public.

Setting: 

South East Queensland

Results:

Poor awareness of endometriosis was confirmed in the general public, with only half of the surveyed cohort reporting having even heard of the condition, and just 45% identifying endometriosis as a potential cause of pelvic pain in women.

Partners of women suffering from endometriosis report feelings of worry, anger and frustration, and over a third of men report an affect on their working life.  A large percentage of partners report that endometriosis affects their day-to-day lives (65%), relationships (52%) and sex lives (70%).  Moreover, there are a significant proportion of partners who do not understand the disease (62%) and feel they do not have support as a couple (87%).

Conclusion: 

Public awareness of endometriosis is low, and potentially contributes to morbidity and financial costs associated with delays in diagnosis.  Given the prevalence of this condition and its demonstrated social and financial ramifications, the role of a public health campaign to increase knowledge for the general population should be explored.

This data is the first of its kind in Australia to review the burden of endometriosis on the male partner, and has demonstrated a significant impact in all areas from finances through to relationships.  Health professionals should be aware of the involvement of the partner in the disease and treatment process, and should aim to provide tailored information about the disease to both parties.