This report has been created from a webinar featuring Paulina Cecula, Co-founder, Dama Health, Lara Zibners, Co-founder, Calla Lily Clinical Care, Tara Harding, Clinician & Owner, Simply You Clinic, and Bianca Schor, Researcher, University of Cambridge, Amsterdam University Medical Center.

The discussion looked at the systemic challenges and necessary advancements in the diagnosis and treatment of endometriosis with a focus on provider education, patient empowerment, and clinical technology integration.

• Endometriosis affects roughly 10 per cent of reproductive age women and girls. That is around 190 million people globally.
• There is no known cure for endometriosis and so treatment is aimed at controlling symptoms.
• Current standard treatments for endometriosis are mainly hormonal contraceptives and surgery which are outdated, with 30–40 per cent of patients not responding well.
• Early diagnosis is a key factor in the treatment of endometriosis but is limited in many ways.

Challenges in advancing innovation and research in endometriosis

Funding:

• Funding is the core obstacle, especially for early-stage, data-intensive work.
• Grants often favor entities that already have data, creating a catch-22 for startups trying to build datasets from the ground up.

Data:

Lack of readily-available data

• Women’s health, especially endometriosis, lacks foundational data compared to fields like oncology, where partnerships with electronic medical records (EMR) and existing data are common.
• Startups must collect and build datasets from scratch, creating a high barrier to entry.

Quality and accessibility of data

• Existing EMR data often lacks the quality needed to identify or track endometriosis cases.
• The goal is multi-modal datasets (genetics, microbiome, symptom patterns), but this is currently being done only at small scales.

Education:

Outdated education and research barriers

• Persisting myths like retrograde menstruation being the cause of endometriosis continue to affect medical education.
• Funding often goes to legacy researchers, even if their data and methodology are outdated.
• Empowered patients are a huge asset, but they must be supported by informed, open-minded, and up-to-date clinicians.

Expertise gap

• Many patients are misdiagnosed or delayed in care due to providers falsely claiming expertise.
• Standardised credentials (e.g., ACOG-assessed qualifications) are urgently needed to help patients access true specialists.
• There’s a need for clinical expertise to interpret medical data, especially for those from non-medical backgrounds (e.g., computer scientists).
• Effective research requires interdisciplinary collaboration.

Need for collaboration

• Recent progress has come from private companies joining forces, e.g., the 700,000-patient genetic study by
  23andMe and Semantics.
• Collaborative efforts are key to pooling data and expertise.

Patient-led advocacy & the risks of misinformation

• Patients are increasingly using technology to self-educate and self-advocate.
• There’s a double-edged sword: patients may fall victim to misinformation or unqualified influencers (e.g.,vaginal steaming).
• Providers must be equipped to interpret patient-driven data and respond with clinical expertise.

Diagnosis:

Early screening and intervention

• Childhood endometriosis remains vastly under-researched and poorly supported.
• Legal and structural barriers even prevent access to care in some countries.
• Screening should begin in adolescence and include school nurses, pediatricians, and underserved clinics.
• Tools should reflect the full-body nature of endometriosis, not just “painful periods.”
• A key challenge remains that there’s no current way to predict which treatments will work for which patients, leading to a long and painful trial-and-error process that can worsen disease progression.

Societal normalisation of menstrual pain

• Adolescents often feel too ashamed to speak about symptoms, leading to missed diagnoses.
• Cultural messaging continues to reinforce the idea that extreme period pain is “normal.”

Technology:

Systemic Inefficiencies

• There’s fragmentation and competition in the space, with limited data sharing.
• A lack of alignment between innovation, reimbursement, and regulatory approval leads to inertia in adoption.

Clinical workflow integration

• Tools must integrate into existing EMR systems and workflows to be adopted widely by clinicians.
• Patients presenting external test results often drive clinicians to stay current and adapt their care.

The future of endometriosis diagnosis and treatment

Although there are many challenges to overcome across all stakeholders involved in the care system, there is hope that we can improve the time it takes to diagnose endometriosis, and the treatments available through increasing personalisation and new and ongoing research.

New treatments are in development—including immunologic and antibody-based therapies—but rigorous clinical trials are needed before they can be implemented at scale and make a material difference to those with enbodmetriosis.

In the short term, personalising how current treatments are prescribed could bridge the gap.

For example, there are ongoing studies to identify hormone responders vs. non-responders which could assist in this.

Despite the pressing need for advancement, we must acknowledge that there is a danger to prioritising speed over scientific rigor given past examples of prematurely released medical solutions that proved unsafe or ineffective.

There is also a need to prevent reverse financial incentives where profit could overshadow patient well-being, particularly around unvalidated diagnostic tools.

Conclusion

It’s clear that we are long overdue for a systemic reset in how we diagnose and manage endometriosis.

With earlier intervention, better provider education, empowered patients, and technology that actually fits the healthcare system, change is not only possible—it’s essential.

This year, WHIS is taking place on 5-6 November, bringing together the entire women’s health eco-system to spotlight the opportunities and challenges within the industry. Our curated programme and audience of change makers accelerate innovation, increase access and bridge healthcare gaps.

If you would like to watch the full webinar on-demand, you can view it here.