A new support group is offering a holistic approach to managing endometriosis, a chronic condition affecting millions of women, by addressing not only the physical symptoms but also the emotional and relational challenges it presents. This initiative comes as research highlights the significant impact endometriosis has on patients’ lives and their partnerships.
Endometriosis, often called “the hidden disease,” is characterized by pain that isn’t outwardly visible, yet can be debilitating and significantly disrupt daily life. It frequently takes years to receive an accurate diagnosis, and many individuals suffer in silence due to a cultural tendency to minimize menstrual pain and gynecological discomfort.
Saga Granér Palmqvist, a specialist physician in gynecology and obstetrics at Östersunds Hospital in Sweden, led a study examining the experiences of individuals with endometriosis and their partners. The findings, published in February in the international scientific journal Women’s Reproductive Health, underscore the demand for a more comprehensive approach to care.
“The study clearly showed that endometriosis isn’t just an individual illness, but something that fundamentally impacts the relationship and everyday life,” Palmqvist said. “Uncertainty surrounding pain, fertility, and the future characterized many conversations. Couples described how life constantly needed to be adjusted socially, financially, and emotionally.”
The research involved interviews with ten couples, revealing that partners often provided a clearer picture of the severity of the condition than the patients themselves, who had sometimes normalized their pain over time. This highlights the importance of including partners in discussions and providing them with information and support.
Östersunds Hospital’s gynecology clinic has maintained a dedicated endometriosis team for the past seven years, focusing on specialized care for those diagnosed with the condition. The new research is now informing and expanding their work.
Beginning in spring 2026, Kristina Jonsson, a contact midwife, and Marie Thulin, a therapist and sexologist, will lead a group designed to complement the medical treatment offered to endometriosis patients.
“The group is part of our continued development work and provides a space to discuss issues that are often overlooked – particularly sexual and reproductive health,” Palmqvist explained. “It also creates an opportunity for connection, to meet others in similar situations and experience like you are not alone. The initial sessions have been very well received.”
The findings emphasize that healthcare providers should consider the whole person, recognizing that endometriosis affects not only the individual diagnosed but also their relationships, work, fertility, and overall quality of life. Providing more than just medical treatment is crucial.
“Pain isn’t visible on the outside, despite the fact that it can be severe and affect the whole of everyday life,” Palmqvist said. “At the same time, it often takes several years before a correct diagnosis is made. Menstrual pain and gynecological problems are still something many people talk about quietly. There is a culture of ‘putting up with it’ and not making a big deal out of it. The combination of invisible symptoms, delayed diagnosis and a remaining stigma means that many people live with endometriosis for a long time without being seen – and therefore it is often called the hidden disease.”
Palmqvist hopes the research will contribute to a more inclusive and person-centered approach to care, where the impact of endometriosis on relationships, sexuality, fertility, work, and quality of life is fully recognized. Early, structured information and the inclusion of loved ones can reduce uncertainty and empower both individuals and their support networks to manage the condition effectively.
