News
Report: The role of technology in advancing endometriosis care
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- Current standard treatments for endometriosis are mainly hormonal contraceptives and surgery which are outdated, with 30–40 per cent of patients not responding well.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Outdated education and research barriers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- Funding often goes to legacy researchers, even if their data and methodology are outdated.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.
A new Female Health Hub launched by the English FA will support women and girls in grassroots football in England with trusted advice on health issues affecting play.
The hub brings together expert-backed guidance, practical tools and player insights in one place, giving women and girls practical advice and reassurance on female health in football.
It has four core aims: to help women and girls better understand their bodies and how female health affects performance and participation, to educate players on key health topics and when to seek further advice or support, to provide practical strategies to help navigate common female health challenges, and to help break down taboos and normalise conversations around female health in football.
Users of the hub will also be able to hear directly from members of the England women’s national team, who share their own experiences of navigating female health matters while playing at the highest level of the game.
“Our ambition is to create a game where women and girls can thrive,” said Sue Day, the FA’s director of women’s football.
“To achieve that, it’s essential that players feel supported in environments that understand and respond to their female health needs.
“We’ve heard directly from grassroots players that they want better information and support around female health, but that they often don’t know where to find it.
“The launch of the Female Health Hub marks an important step in changing the landscape.
“We want every player to feel confident in her own skin and supported without judgment, so she can feel empowered by her body, rather than held back by it.”
The platform was launched following research conducted by the FA that highlighted the need for better education and support around female health in football.
According to the FA, 88 per cent of adult players surveyed said their menstrual cycle has an impact on their ability to train or play, but 86 per cent reported they had never received education about the menstrual cycle in relation to football performance and training.
The research also found 64 per cent of women experience issues related to sports bras or breast health while playing football, despite sports bras being considered one of the most important pieces of playing kit.
Players also expressed strong interest in learning more about injury prevention, at 87 per cent, nutrition, at 84 per cent, and mental health, at 77 per cent, in relation to female health.
The first phase of the Female Health Hub focuses on three of the most requested topics: menstrual health, breast health and injury resilience, with further content to follow, including nutrition and pelvic health guidance.
The Royal College of Midwives (RCM) has referred to the women’s health strategy as a ‘missed opportunity’ to address maternity services.
The renewed strategy was released by the government this week, with the aim of putting women’s experiences at the centre of care and ensuring they are “better heard and served”.
However, the government stated that because of ongoing investigations into maternity services across the country, the strategy “does not seek to address safety in maternity and neonatal services”.
The RCM described this as a “missed opportunity” and urged the government to ensure that, following the inquiries, maternity is placed “at the very heart” of the strategy.
Gill Walton, RCM chief executive, said the college was “deeply disappointed” that maternity services “do not feature as a headline priority” in the renewed strategy.
She said: “This is a significant missed opportunity and one that is very difficult to understand.
“Pregnancy, birth and the postnatal period are not a footnote in women’s health – they are one of the most significant and consequential phases of a woman’s life.
“A strategy that treats maternity as an afterthought is not truly a women’s health strategy at all. It is exactly the kind of thinking that has allowed maternity services to reach the point they are at today.”
Walton acknowledged that the strategy contained commitments on ensuring women’s voices shape their care, on supporting families through pregnancy loss and on the principle that services should be held accountable when they fail to listen to women.
She added: “But a strategy that addresses one part of women’s health while leaving maternity care behind is only doing half the job.”
Walton urged the government to ensure that this is addressed when the ongoing investigations into maternity care conclude, with any recommendations placed “at the very heart of this strategy with the seriousness and urgency that women, families and midwives deserve”.
In the foreword to the renewed plans, health and social care secretary Wes Streeting referred to the ongoing independent National Maternity and Neonatal Investigation as action being taken by the government to improve safety in maternity services.
The strategy also refers to the new National Maternity and Neonatal Taskforce, chaired by Streeting, which aims to help deliver “safer, more equitable care” for women, babies and families.
The foreword said that, because of ongoing initiatives, it was “important that this work continues without restriction and that the government can properly respond to the findings”.
It added: “This renewed women’s health strategy therefore does not seek to address safety in maternity and neonatal services other than that related to women’s health before and during pregnancy and the actions we are taking immediately to improve maternity and neonatal care.”
The strategy does, however, include plans to prioritise health education in schools, communities and healthcare settings to “empower women” with the “knowledge and tools they need to help control their fertility” and “prepare for the best pregnancy outcomes.
It also promises to provide women with access to “safe and high-quality contraception, abortion care, fertility services, preconception care and support after pregnancy loss in convenient settings.
Article produced in association with London Pregnancy Clinic and Jeen Health
For the majority of couples planning a pregnancy, genetic testing is not something they think about until a problem arises.
Pre-conception genetic carrier screening challenges this approach by identifying risk before pregnancy begins.
As panel sizes have grown and at-home testing options have become widely available, carrier screening is transitioning from a niche clinical referral into a mainstream component of reproductive planning.
What Carrier Screening Tests For
Being a carrier of a genetic condition means carrying one copy of a variant in a gene associated with that condition, without being affected by it.
In most cases, carriers are entirely unaware of their status.
The clinical significance of carrier status emerges when both members of a couple carry a variant in the same gene: in this scenario, each pregnancy carries a one in four chance of resulting in a child who inherits two copies of the variant and is affected by the condition.
The conditions most frequently included in expanded carrier screening panels include cystic fibrosis, spinal muscular atrophy (SMA), fragile X syndrome, sickle cell disease, and a range of metabolic and enzyme deficiency disorders.
The Beacon 787 carrier test, offered by Jeen Health, screens for 787 conditions from a single sample, making it one of the most comprehensive panels currently available to UK families.
Who Is Most Likely to Benefit
Any couple planning a pregnancy can consider carrier screening. It is particularly relevant for:
- Couples with a family history of a known inherited condition
- Those from populations with higher carrier frequencies for specific conditions, including Ashkenazi Jewish, South Asian and African communities
- Couples pursuing fertility treatment, where genetic information informs treatment planning
- Those who wish to have the most complete picture of their reproductive health before conception
Importantly, being a carrier of a condition does not mean a child will be affected. It means there is a defined statistical risk that can be quantified, discussed and planned for with appropriate clinical support.
How the Test Is Performed
Carrier screening is typically carried out on a blood or saliva sample.
For at-home options such as the testing offered by Jeen Health, a cheek swab collection kit is dispatched to the patient, the sample is returned by post, and results are delivered digitally within a defined turnaround period.
In-clinic carrier testing may use a blood draw and provides the advantage of immediate access to a clinical consultation at the point of result delivery.
London Pregnancy Clinic offers genetics counselling through its partnership with Jeen Health, allowing couples to receive and contextualise carrier test results with expert support.
Genetic counselling before and after testing is recommended by Genomics England as a standard component of any genomic testing pathway.
What Happens If Both Partners Are Carriers
If both partners are identified as carriers for the same autosomal recessive condition, they are typically offered further counselling to discuss their options.
These may include proceeding naturally with an awareness of the risk, using prenatal diagnosis (CVS or amniocentesis) during pregnancy to test the fetus, or pursuing preimplantation genetic testing (PGT) in the context of IVF, which allows unaffected embryos to be selected before transfer.
The purpose of identifying carrier status before pregnancy is to give couples time to consider these options without the added pressure of an ongoing pregnancy.
Knowledge of carrier status does not remove reproductive choices; it expands the information available when making them.
The Role of Pre-Conception Services
Carrier screening sits within a broader category of pre-conception care that includes fertility assessments, general health optimisation and, where relevant, management of existing conditions before pregnancy begins.
London Pregnancy Clinic offers pre-conception services encompassing fertility investigations, genetics counselling and carrier testing as part of an integrated 0th trimester approach, allowing couples to address genetic and clinical risk factors before their pregnancy starts rather than after.
Disclaimer: This article is produced for informational purposes only and does not constitute medical advice, diagnosis or treatment.
Clinical guidance referenced reflects published NHS, NICE and RCOG standards as at March 2026. Individual circumstances vary; readers are advised to consult a qualified healthcare professional before acting on any information in this article.
This piece was produced in association with London Pregnancy Clinic and Jeen Health, which provided background clinical information for editorial purposes.
Hyperlinks to external sources are included for reference only and do not represent an endorsement of any product, service or organisation.
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