MEDIA RELEASE: Research shows patients with endometriosis are being told to plan a pregnancy to help manage or treat the condition, despite a lack of evidence to show it reduces symptoms. The controversial advice has prompted calls to improve medical education about endometriosis.
More than 3000 medically diagnosed patients were surveyed across the globe as part of the collaborative study involving researchers from the University of Adelaide, University of Sydney and EndoActive, a not-for-profit charity focusing on awareness, information and advocacy.
The research, which focused on patient experiences, revealed more than half (1892 of 3347 total) were advised to fall pregnant or have a baby to manage or treat endometriosis, which can include severe pelvic pain and infertility. Almost 90 per cent (1691 of 1892) of endometriosis patients were given this recommendation by healthcare professionals, including gynaecologists and GPs, with 36 per cent told it would cure their condition.
“Pregnancy or having a baby isn’t a treatment for endometriosis and this advice from health professionals can have negative impacts on those who receive it,” said co-author Professor Louise Hull, a fertility expert from the University of Adelaide’s Robinson Research Institute.
Although this advice is well-meaning, in modern practice, there are better ways of discussing fertility concerns and fertility options with people with endometriosis.
“While a third of the respondents felt the advice was appropriate given their situation at the time, many other women in this survey reported feeling too young to have a baby and felt stressed and pressured after being given this inappropriate albeit well-intentioned advice,” said Professor Hull.
Some of the patient responses from the research paper, which has been published in BMC Women’s Health, include: “I was 21, single and at uni so it simply wasn’t an option” and “I was 13. It wasn’t appropriate.”
The research also revealed the life-altering impact this advice had on the mental health of patients, their relationships, major life decisions and their trust in the healthcare system.
“It ended up ruining my relationship as I felt a huge pressure to have kids young and my partner couldn’t understand this intense conversation at a young age,” said one respondent.
The European Society for Human Reproduction Embryology (ESHRE) Guidelines for Management of Endometriosis state that patients should not be advised to become pregnant with the sole purpose of treating endometriosis, as pregnancy does not always lead to improvement of symptoms or reduction of disease progression.
“EndoActive supports health professionals providing fertility advice in appropriate circumstances particularly as endo may impact fertility. However, pregnancy advice, especially in relation to curing or treating this condition is inappropriate because babies are not treatment options and the advice is not evidence-based, said Sylvia Freedman, the Co-Founder of EndoActive who also co-authored this paper.
Researchers are now recommending more education about treating endometriosis for healthcare professionals.
“Endometriosis affects one in seven women and those assigned female at birth. Asking patients about their fertility preferences, while also providing evidence-based advice on the treatment and management of the condition is crucial to improve patient experiences and outcomes,” said Professor Hull.
Case studies available on request.
Professor Louise Hull, Head of Endometriosis Group, Robinson Research Institute, The University of Adelaide. Mobile: +61 (0)403 933 313. Email: firstname.lastname@example.org
Jessica Stanley, Media Officer, The University of Adelaide. Mobile: +61 (0)422 406 351. Email: email@example.com
Syl Freedman, Co-founder EndoActive, Mobile: +61 (0)401 208 070. Email: firstname.lastname@example.org (mobile best)