Tuesday, 23 February 2016

Endometriosis and fertility, women’s accounts of healthcare

PhD candidate Kate Young from the Jean Hailes Research Unit (JHRU) along with co-authors Dr Maggie Kirkman and Professor Jane Fisher recently published a paper in Human Reproduction on women’s experiences of endometriosis from their perspective. 

Kate is undertaking her PhD at SPHPM on “Understanding women’s experiences of endometriosis and of condition-specific health care”, and one of the really important early findings is that doctors may be prioritising their fertility over symptom relief and quality of life for women living with the condition.

“We conducted a study that aimed to increase our understanding of women’s experiences of endometriosis from their perspective. This paper features one analysis from this study where we examined women’s accounts of the healthcare they have received for endometriosis and fertility, with the goal of informing care that meets women’s needs,” Kate Young said.

Endometriosis, a chronic and inflammatory condition affects approximately one in ten women worldwide, and while there is no cure for endometriosis, treatment focuses on management of symptoms.

According to Kate’s findings, women recalled being given varied information and advice, empathetic and individualised care but there were also opportunities for enhancing clinical practice.

“One of the really important findings is that many women perceived their doctor to prioritise their fertility over symptom relief and quality of life without first consulting them,” Kate Young said.

“Women’s accounts revealed potential conflict between their own and their doctor’s prioritising of fertility within their wider endometriosis care; this was particularly apparent when pregnancy was presented as a treatment option and when the option of hysterectomy was denied to women seeking it. There appears to have been no empirical investigation of the effect of pregnancy on endometriosis and its symptoms, nor do clinical guidelines recommended it. While hysterectomy is not a cure for endometriosis it may provide relief for some women,” she said.

The association between endometriosis and infertility is not well understood. While it is often quoted that 30-40 per cent of women with endometriosis experience infertility, such statistics are based on low quality research. The evidence suggests an association between endometriosis and infertility but we do not know the strength of this association nor do we have a thorough understanding of the mechanisms that underlie it.

Treatments are not long-term, surgical removal of lesions by ablation or excision is typically temporarily effective and progestogen treatment can only inhibit the growth of the disease.

Researchers and clinicians around the world are looking for ways to address the known burden of endometriosis on the women who live with the condition and the health care systems that support them. Kate Young's research suggests that clinicians may benefit from further support to provide fertility care to women with endometriosis and from clinical guidelines that clarify better the evidence for the association between endometriosis and fertility.

“Women’s fertility needs and priorities differ for many reasons; there can be no ‘one size fits all’ approach to care. While fertility may be important to most women with endometriosis, it is but one aspect of living with this complex condition,” Kate Young said.

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