Endósamtökin, The Icelandic Endometriosis Association, expresses deep concern following the Ministry of Health’s decision not to continue reimbursement for endometriosis-related surgeries carried out outside of the National University Hospital.

In a response from the National Hospital, it was stated that surgery is only a small part of treatment for endometriosis. However, the association questions this claim, as endometriosis can currently only be definitively diagnosed through surgery. While it is true that hormone therapy, physiotherapy, and pain management play crucial roles, they cannot replace surgical intervention when it is needed.

At present, around 100 women are on the waiting list for surgery at Klíníkin, a private hospital. It is therefore evident that this decision will increase waiting times for essential treatment for people with endometriosis, which the Association finds wholly unacceptable. This community has long been underserved by the healthcare system — this is reflected in the fact that diagnosis often takes 7–10 years on average.

While the ability to choose where one receives care is important, our primary concern is the impact this decision will have on surgical wait times. Extended delays can lead to serious consequences — including long-term organ damage, reduced quality of life, loss of fertility, and withdrawal from work, education, and social life.

The Icelandic Endometriosis Association is a rights- and advocacy-based organization representing women and individuals with endometriosis. We strongly object to not being consulted in decision-making processes that directly impact the people we represent. In a meeting with the Minister of Health, Alma Möller, the Association expressed concern over the current service agreements and outlined the many challenges people with endometriosis face within the healthcare system.

Making such a decision without listening to those most affected undermines trust and risks increasing distress and marginalization among those who are already vulnerable and living with chronic illness.

We call for the Ministry of Health to immediately reconsider this decision and to ensure that waiting times for surgery do not increase. Furthermore, we call for improved collaboration and consultation with service users in the development of healthcare services for this group.

To the women and individuals currently on waiting lists who now face even longer delays, we say: We stand with you. We will not stop fighting for your rights. Our office is always open for those who need a conversation or support from others who understand.