Nearly half of women with endometriosis are not satisfied with the support provided by their medical team, a study reveals.

According to patients, clinicians should share more information about this gynecological disease and how to manage the pain associated with it. They should also strive to provide a personalized plan for each patient, covering both physical and psychological symptoms, as well as alternative treatment options.

The study, “Satisfaction with medical support in women with endometriosis,” was recently published in the PLOS ONE journal.

Endometriosis affects 5-10 percent of women of reproductive age, and it can severely affect their physical and psychological health. However, their symptoms are not always taken seriously and are often normalized by doctors, and even by the women themselves. As a result, many women suffer for several years before a reliable endometriosis diagnosis is confirmed.

Different factors, including the chronic nature of the disease, its diverse presentation, and the significant impact it has on women’s personal and professional quality of life, can be challenging for medical support teams. At the same time, adequate support from these medical professionals is particularly important to achieve better outcomes.

In a multicenter, questionnaire-based study, researchers evaluated endometriosis patients’ satisfaction with their medical support. The study enrolled 498 women with confirmed endometriosis at clinical sites in Germany, Austria, and Switzerland.

Of all participants, 54.6% said they were satisfied with their medical support, whereas 45.4% were dissatisfied. Among the 65 women participating in self-help groups, only 27.7% said they were satisfied.

Those who reported being adequately informed at the time of their initial endometriosis diagnosis were more often satisfied than those who felt they were inadequately informed at the beginning of their journey.

Approximately 83.3% of the participants stated that fertility and mental health support were important issues that should be addressed by doctors at the time of diagnosis. In addition, 91.6% agreed that pain management was also a critical issue that should be acknowledged from the beginning.

“Women were significantly more often satisfied with medical support when each of these three issues was addressed either at initial diagnosis or later,” the researchers wrote.

Participants’ suggestions for improving medical support focused on different aspects, including providing better patient education and more information about the cause and healing, mentioned by 10.4% of the women. And 8.4% mentioned the importance of clinicians offering a more personalized treatment approach, including alternative treatments and psychological support, while 7% wanted doctors to take women and their pain seriously.

The team found that by providing more adequate information, taking the patient’s mental status seriously, and giving appropriate support to women in handling their symptoms rather than just alleviating them, doctors could significantly improve women’s satisfaction.

“Meeting patients with empathy to create a relationship, where they feel welcome to ask questions or present their specific needs and individual expectations is mandatory for patient satisfaction with medical support,” the researchers said. “Such approach is essential to allow endometriosis-affected women to achieve the best possible quality of life.”