Patients must get pregnant to treat endometriosis despite lack of evidence, study finds

Research shows that patients with endometriosis are advised to plan a pregnancy to help manage or treat the condition, despite a lack of evidence showing that this reduces symptoms. This controversial opinion has sparked calls for improved medical education about endometriosis.

More than 3,000 medically diagnosed patients were surveyed worldwide in a collaborative study involving researchers from the University of Adelaide, the University of Sydney and EndoActive, a non-profit charity. non-profit focused on awareness, information and advocacy.

The research, focusing on patients’ experiences, found that more than half (1,892 out of 3,347 total) had been advised to get pregnant or have a baby to manage or treat endometriosis, which can include severe pelvic pain and infertility. Nearly 90% (1,691 of 1,892) of endometriosis patients received this recommendation from health professionals, including gynecologists and general practitioners, and 36% of them said it would cure their illness.

“Pregnancy or having a baby is not a treatment for endometriosis and this advice from health professionals may have negative impacts on those who receive it,” said co-author Professor Louise Hull, a fertility expert at the Robinson Research Institute at the University of Adelaide.

While this advice is well-intentioned, in modern practice there are better ways to discuss fertility issues and fertility options with people with endometriosis.

“While a third of those surveyed felt the advice was appropriate given their circumstances at the time, many other women in this survey reported feeling too young to have a baby and feeling stressed and under pressure after receiving this inappropriate, although well-intentioned, advice.” said Professor Hull.

Some of the patient responses from the research paper, published in BMC Women’s Health include: “I was 21, single, and in college, so it just wasn’t an option” and “I was 13. It wasn’t appropriate.”

The research also revealed the transformative impact of this counseling on patients’ mental health, relationships, major life decisions and trust in the healthcare system.

“It ended up ruining my relationship because I felt enormous pressure having children young and my partner couldn’t understand this intense conversation at a young age,” one respondent said.

The European Society for Human Reproductive Embryology (ESHRE) guidelines for the management of endometriosis state that patients should not be advised to become pregnant for the sole purpose of treating endometriosis, because pregnancy does not always result in improvement of symptoms or reduction in disease progression.

“EndoActive supports healthcare professionals in providing fertility counseling in appropriate circumstances, particularly as endo may impact fertility. However, pregnancy counseling, particularly in this regarding the cure or treatment of this disease, is inappropriate because babies are not treatment options and this advice is not evidence-based.” said Sylvia Freedman, co-founder of EndoActive and co-author of this article.

Researchers are now recommending more training on endometriosis treatment for healthcare professionals.

“Endometriosis affects one in seven women and those who were assigned at birth. It is crucial to ask patients about their fertility preferences, while providing evidence-based advice on treatment and disease management, to improve patient experience and outcomes,” Professor Hull said.