Endo What? Current Challenges and Opportunities Within Endometriosis

Why endometriosis is often overlooked

Alena Menshikova via Shutterstock

March is Endometriosis Awareness Month — an important event aiming to tackle the fact that 54% of people don’t know about endometriosis¹. This seems like a good opportunity to explore some of the challenges and opportunities in treating this important condition.

“Half of the UK isn’t aware of the life-changing condition that’s as common in women and those assigned female at birth as diabetes and asthma.” Endometriosis UK

What is Endometriosis?

Endometriosis is a condition that affects 1 in 10 women that most people have never heard of. In the UK that equates to approximately 2m² people and 176m worldwide³.

In endometriosis tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes, but it can be anywhere in the body. This can cause symptoms such as chronic pain, fatigue, depression, problems with sex, an inability to conceive and more. The impact on quality of life can be huge and in one survey, 95% said endometriosis had impacted their lives negatively or very negatively⁴.

Despite the prevalence and the severity of the condition, there remain many challenges in endometriosis care, with significant time to diagnosis, a lack of patient-friendly diagnostics and a need for more targeted treatments.

Current Challenges

1 — Many have a Poor Experience

There is some excellent treatment and support provided across the UK, including prompt diagnosis and holistic care. Unfortunately, however, the data tells us this is not the case for everyone.

The average time to a diagnosis is 8 years and the majority (58%) of women need to visit their GP 10 times or more to be diagnosed⁴. Unfortunately, this hasn’t improved in the last decade.

Women also report some of their health needs are not currently being met. A study found 90% would have liked access to psychological support, but were not offered this⁴. 89% felt isolated due to their endometriosis and 58% would have liked fertility support and treatment but were not offered it (endometriosis doubles the risk of infertility⁵).

2 — The Research Gap is Real

A lack of medical research means we still don’t know what causes endometriosis and we don’t have good treatments for it.

The National Institutes of Health (NIH) had a budget just shy of $42bn in 2020 and only $13m of that went to endometriosis research. This puts it below funding into teenage pregnancy and teenage sexual activity⁶. This is part of a broader problem of a lack of funding for Women’s Health issues generally, with less than 2.5% of funding in the UK going into the area.

The graph below shows the number of published clinical trials into endometriosis has been flat in the last 30 years.

Source Pubmed

3 — No Patient-Friendly Diagnostic

A large hindrance to the patient experience is the options, or lack thereof, for diagnosis. Currently, the only way to definitively diagnose someone with endometriosis is by laparoscopy (major abdominal surgery under general anaesthetic). Given the lack of targeted treatments, which we’ll go onto next, the cost:benefit of major surgery just doesn’t add up for many women.

In October 2020, Dotlab published the first-ever study showing it is possible to detect endometriosis on a blood test in a small sample of women. This will have a huge impact on endometriosis care when it is brought to market. Endodiag is looking to create a similar test.

Another company called Next Gen Jane has reportedly tried to use menstrual samples from tampons to diagnose the condition but has yet to be successful. A UK based company Frendo has created an FDA approved screening test with the aim to empower patients with greater knowledge on the likelihood of having endometriosis.

4 — A Lack of Treatments

There is no cure for endometriosis and it can be difficult to treat. The mainstay of treatment currently is pain medications, oral contraceptives or surgery.

Pain medications are useful but fail to address the underlying problem and there is some conflicting evidence for oral contraceptive use. Some papers report a decreased risk for current users but an increased risk for past users*. Surgery can be an option but some may have to undergo multiple operations and there are risks associated.

As laid out by a recent government study⁴ into endometriosis there is a considerable need for novel non-hormonal targeted therapies that would:

• relieve pain while minimising side effects
• allow the menstrual cycle to continue, and ideally allow for pregnancy during treatment (if desired)
• prevent disease recurrence by targeting specific disease-associated pathways.

There are a number of medications currently in animal studies and phase I-II clinical trials⁹. Hopefully, these can offer future solutions.

*Oral contraceptives are used to treat endometriosis-associated pain and, therefore, this association may reflect suppression of endometriosis symptoms while on oral contraceptives that reappear after the oral contraceptives are stopped.

We may be at an Inflection Point

While still a stigmatised and little known condition, endometriosis is beginning to garner more attention.

An All-Party Parliamentary Group recently published a paper that recognises the current challenges faced by people with endometriosis and sets out the UK government’s plan to improve care.

Alongside this, Endometriosis UK is working with the Royal College of General Practitioners on a Menstrual Wellbeing Toolkit to help GPs identify the disease earlier¹⁰. They have also championed menstrual wellness to be included in school curriculums¹¹.

Employers are also starting to recognise the significance of endometriosis with Standard Life becoming the first-ever endometriosis-friendly employer and many companies following suit¹².

What Role can Private Companies Play?

The FemTech market is set to boom and other chronic conditions such as menopause are seeing significant innovation. The ‘endometriosis market’ could be huge. With 2m women in the UK, this puts it at half the size of the diabetes market in terms of the number of people affected.

While there are many challenges within the endometriosis market currently, there is a role startups can play, including much-needed health education, reducing feelings of isolation through community, increasing access to specialists, providing psychological support and providing fertility services to name a few. Companies such as Bloomful (UK), Syrona (UK), Lyv (France) and Phendo (US) are aiming to fill some of these gaps.

As our knowledge of this disease advances so will the opportunity for startups to enhance the care experience for all people living with endometriosis.

Conclusion

Like many health issues affecting women, endometriosis has long been overlooked and many people with the condition report a poor care experience. While there are many current challenges there are some rays of hope with a comprehensive plan from the UK government and exciting developments in the diagnostics space. This combined with a boom in the wider FemTech market could provide the stimulus needed for more companies to enter this space. Given the potential size of the market and the depth of patients’ needs, these companies could have a huge impact and push us closer to closing the gender health gap.

If you’d like to get in touch with me to talk about endometriosis, FemTech or health more generally please do reach out to me here.

Concerned About Endometriosis?

If you are concerned about endometriosis it is advisable to speak with your GP. In addition here are some resources you might find useful:

• Check out the great resources provided by endometriosis UK here.
• Review the Royal College of Obstetricians and Gynecologists (RCOG) patient leaflet on endometriosis here or listen to the audio version here.
• Take a look at the RCOG patient leaflet on long-term pelvic pain here.
• You can also review the NICE diagnostic algorithm here. (Warning this is quite medical)

References

1. Endometriosis UK website. Link
2. NHS Inform website. Link
3. Endometriosis UK website. Link
4. All-Party Parliamentary Group on Endometriosis Report
5. Endometriosis can double the risk of infertility in under 35s. A prospective cohort study of endometriosis and subsequent risk of infertility. J. Prescott, L.V. Farland, D.K. Tobias, A.J. Gaskins, D. Spiegelman, J.E. Chavarro, J.W. Rich-Edwards, R.L. Barbier, S.A. Missmer. Hum Reprod (2016) 31 (7): 1475–1482
6. CNBC article
7. UK Health Research Report
8. Oral contraceptives and risk of endometriosis: a systematic review and meta-analysis. P. Vercellini, B. Eskenazi, D. Consonni, E. Somigliana, F. Parazzini, A. Abbiati, L. Fedele. Hum Reprod Update (2011) 17 (2): 159–70
9. Current and emerging treatment options for endometriosis. S. Ferrero, G. Evangelisti, F. Barra. Expert Opin Pharmacother (2018) 19 (10): 1109–1125
10. Endometriosis UK website. Link
11. Endometriosis UK website. Link
12. Endometriosis UK website. Link