Study Shines Light on ‘Double-Edged Experiences’ of Women with ‘Hidden’ Disease

Study Shines Light on ‘Double-Edged Experiences’ of Women with ‘Hidden’ Disease

Women with the “hidden” disease of endometriosis face a contradictory “double-edged experience of healthcare,” enduring a long struggle of being treated with ignorance before finally feeling they were acknowledged, according to a study published in the Journal of Clinical Nursing.

The qualitative study was based on interviews with nine women between the ages of 23 and 55, each with a laparoscopy-confirmed diagnosis of endometriosis. The women shared that their encounters with healthcare professionals in dealing with the disease had been destructive or constructive at various times, and had a great impact on their perception of themselves and their bodies.

The findings of the study were featured in an article titled “The double-edged experience of healthcare encounters among women with endometriosis: a qualitative study”.

Endometriosis is often underestimated and unrecognized because of its menstruation-like symptoms. This happens not only among women themselves, but also among healthcare professionals, which in most cases can delay a diagnosis.

The researchers from Linköping University in Sweden who conducted the study called endometriosis a “hidden” disease, and found that the few research studies done on women diagnosed with endometriosis suggest that they often have problematic encounters with healthcare professionals. The goal of their study was to gather more information that could help improve clinical support for these women.

All of the women interviewed had experienced destructive encounters where they felt they were treated with ignorance and disbelief while “baring their health, their souls, and their bodies.” They all reported the negative effects of encountering healthcare professionals who did not recognize disease symptoms.

“And then I sought help, but you were almost treated like an idiot when you called the healthcare services. Menstrual pain is something all girls have. Well, just take some painkillers and it will pass,” one of the women reported.

But they also described constructive encounters where they felt acknowledged by their healthcare providers. After many years of negative encounters, the positive experiences of feeling they had been listened to and believed had a great impact on boosting their self-esteem.

Getting a deeper comprehension of their condition’s symptoms and how they influence their physical, mental and sexual health were important positive aspects that made these clinical consultations good experiences.

“Earlier there was just endometriosis, there was not a thought that there was a human being behind this endometriosis,” another participant of the study reported. She recounted what a difference it made when she met with a doctor “who actually asked me about how this affected me as a woman”

“It was so relieving; suddenly I had the answers! Just getting that information was immensely important. This was a turning point for me as a woman,” she told the researchers.

The results of this study highlight how the interactions between women with endometriosis and healthcare professionals can affect the perceptions patients have of their physical health, bodies, and sexuality. The encounters also can alter patients’ self-esteem.

“The information about the constructive side of the experience is of clinical value for all healthcare professionals (nurses, midwives, doctors) encountering these women, as it provides a new level of understanding of the experiences,” the authors wrote.

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