Endometriosis Day (September 29): Millions of women affected – diagnosis takes an average of 10 years

Endometriosis is one of the most common but least understood gynaecological diseases: Tissue that resembles the lining of the uterus grows outside the uterus, causes severe pain and can lead to infertility. In Germany, an estimated 10 to 15 per cent of all women of childbearing age (15-49 years) are affected - that is several million patients. Despite this, it takes an average of ten years from the first symptoms to diagnosis.

During this time, many women report stigmatisation and a lack of attention for their symptoms. "Social media clearly shows how much those affected suffer from their experiences and pain being minimised," explains Till Neugebauer from the Chair of Health Care Research at Witten/Herdecke University (UW/H).

Research with those affected

The Chair of Health Care Research at the UW/H initiated the project "Diversity-sensitive care for patients with endometriosis" (DivEndo), which was funded by the university for one year. The aim was to create the basis for a research proposal.

As part of the project, the research team worked closely with patients and doctors, organised workshops and evaluated over 7,000 social media comments.

Four central themes crystallised:

• Massive psychological and physical stress
• Structural deficits in the healthcare system
• Social effects on everyday life, school and appointments

• Strategies of those affected for coping with the illness

Based on these results, the research proposal will now be submitted to the Innovation Fund in the autumn. Building on this, the team wants to develop a digital service that improves awareness of endometriosis in society and communication between patients and healthcare professionals.

Strengthening self-efficacy - improving care

One focus of the follow-up project is on strengthening the self-efficacy of those affected. Social media will be used to empower women to play an active role in their care. "We want to support women in communicating confidently with doctors," says Till Neugebauer. To this end, workshops with patients and specialists are to be continued and new communication strategies developed.

The fact that the topic of endometriosis is now mentioned in the coalition agreement makes the team optimistic. If the application is approved, the project could close an important gap: While research to date has been clinical in nature, this approach puts the patients' perspective at the centre. "The discussions with those affected have opened our eyes," summarises the research team. "This collaboration was incredibly valuable - and we hope that we can contribute to better care in the long term."