ELLA ADENIKE ODUTOYE

House of Commons
London
SW1A 0AA

Dear Steve Barclay,

Gender bias is an issue that has burdened health care services for decades, as you said when announcing the women’s health strategy in 2022.¹ It presents as ‘under representation of women in health studies, the trivialisation of women’s complaints, and discrimination in the awarding of research grants’.² However, as both a medical student and an anthropologist, what concerns me the most is the lack of investment by all areas of health care into endometriosis, and this narrative needs to be changed.

Biologically speaking, endometriosis is ‘the presence of tissue that resembles the lining of the uterus, in sites outside the uterus, usually in the pelvic cavity’.³ For sufferers, it’s a chronic illness that can cause severe pain, infertility, and other debilitating symptoms.³ Despite affecting ‘10 per cent of reproductive-age women’, endometriosis remains an enigma to most.⁴ ‘There is no known cure, the cause is unclear, and the efficacy of treatment varies greatly from patient to patient’, even if treatment does work it’s not sustainable long-term due to the use of hormones.⁴

As someone who suffers with endometriosis, this issue is close to my heart, but I believe that there are ways to start improving health care around endometriosis.

Firstly, one of the main issues for sufferers is the delay in receiving a diagnosis and accessing treatment. A ‘diagnosis in the UK takes on average an unacceptable 8 years’.⁵ Untreated endometriosis results in a more extreme presentation of symptoms, especially on the fertility side, so delays can have a large impact on the future of a woman’s health.² Personally, I was delayed in a diagnosis partly because of the lack of endometriosis awareness in health care, but also the lack of education of the symptoms in schools and wider society. Despite affecting a significant portion of the female population, endometriosis isn’t spoken about during sexual health education in school, and in medical school it’s discussed in passing and in little detail.⁶

Why would we not tell our adolescent females about a disease that 10% of them will have to suffer with?

There are many anthropological studies that explore sexual health education; however, I want to focus on one that interviews the students themselves to gauge their opinion on the current curriculum and what they think is missing. Naturally, sex education needs to have its focus on puberty, sex, and reproduction as these are the primary purposes. However, endometriosis affects all three of these areas so there wouldn’t be an extortionate amount of work put on teachers to incorporate it. During puberty endometriosis can present as very heavy menstrual bleeding paired with excruciating pain, my pain caused me to regularly vomit and consume high rates of pain medication to try and reduce it.³ Other sufferers report experiencing dangerous burns on their abdomen when using heat to manage the pain.⁸ These symptoms can be physically and emotionally damaging to young girls and may give rise to other health problems, such as anxiety and depression, due to their suffering.⁵ Endometriosis can also make sexual intercourse painful; this is from the inflammation that it causes within the vagina and uterus.³ If girls aren’t educated on this, they may assume pain is normal and ignore it. Not only is this uncomfortable for the sufferers, but it may also lead to them shying away from intimate relationships out of fear. Lastly, endometriosis can also lead to infertility or make reproduction difficult.³ We don’t want to inject fear into these young girls, but infertility can be an emotional journey and an early diagnosis of endometriosis may allow them to avoid this problem. If not educated on these symptoms, girls may not recognise that they have endometriosis, which delays receiving a diagnosis.

This change doesn’t simply lie on the shoulders of teachers, but also on healthcare professionals, who have a duty to educate teachers on what is crucial information for young people to be aware of. This if where, as health secretary, I believe the responsibility lies with you. In your strategy plan you state you ‘will provide better information and education on issues relating to women’s health’.¹ However, your platforms are simply the NHS website and other online sources. Not only is this inaccessible for people who don’t have access to the internet, it also isn’t useful for younger people who don’t go online. Focusing on education in schools is more accessible and targets the issue early on before the disease is too severe. This places women’s health at the forefront and will hopefully increase the successful treatment of any issues they have and reduce strain on the NHS as patients will be more educated on what their symptoms may be.

Unfortunately, schools aren’t the only educational institutes lacking in education. As I previously mentioned, during medical school I have received minimal teaching on endometriosis, and as I attend University College London, a well-respected medical school, I can only assume that most other medical schools are similar. The consequence of this is doctors don’t properly understand endometriosis and, therefore, aren’t fully capable in identifying it in a patient.

Much of the anthropological literature around endometriosis focuses on how sufferers feel ‘dismissed by their physicians, often [seen] as hysterical or hypochondriacal accounts of ‘normal’ menstruation’.³ This is the main cause of the delay in diagnosis, many endometriosis patients visit their doctors’ multiple times but are turned away due to the doctors not knowing how to recognise endometriosis.⁴ Not only does this risk the endometriosis worsening, but it also feeds distrust in the patients towards their clinicians.³ ‘Members of the community often assert that only those with endometriosis can truly understand it and tend to be somewhat guarded towards ‘outsiders’’, this divide is unhelpful to all.³ Your strategy says you will be opening hubs that focus on women’s health, however, the first port of call for most people is their GP.¹ Instead you should ensure that the curriculum at medical schools is created with all patients’ best interests at heart, and to make sure doctors are equipped to recognise most illnesses and diseases. This will improve patient health treatment and decrease the distrust patients may have in their clinicians.

If endometriosis was more of a priority in all aspects of education, it would reduce the burden on the NHS. Currently endometriosis has an economic burden of £8.2 billion per year, if it’s included in education then physician visits and hospitalisations would decrease, thus reducing the burden and allowing money to go towards more helpful avenues.⁷ The main avenue I would suggest is research, which leads me on to my next area of improvement.

Endometriosis has been severely underfunded relative to other diseases. As it’s a female-dominated disease this isn’t a surprise, there’s a ‘historical lack of research focus on women’s health concerns, [which has] compromised the quality of health information available to women as well as the health care they receive’, this needs to change.² As I previously mentioned, hardly anything is known about endometriosis so there are a lot of areas available for researchers to focus on. The main areas, I believe, are the diagnosis and treatment of it. A lot of money is already being put into creating new imaging techniques for other areas of health care, these advances ‘should be monitored for application to diagnosis of endometriosis’.² This would be economically smart and save healthcare professionals from having to receive training on multiple pieces of technology.

Additionally, ‘development of non-hormonal medical treatments to prevent or treat endometriosis and associated symptoms is a priority’.⁴ Currently the main method of treatment is hormonal contraceptive for lower stages and induced menopause for severe endometriosis, unfortunately, these options aren’t feasible long-term as the side effects on the body can be very damaging.⁴ Aside from this, the only other options are surgery to remove endometrial tissue, a hysterectomy, or getting pregnant, which some doctors suggest sufferers should do even if it doesn’t suit their lifestyle.³ As you can see, these are all unappealing and have a large impact on sufferers’ lives. If endometriosis research received more funding, alternative treatment plans could start developing that give women an effective long term treatment plan with reduced side effects.

The paper ‘Priorities for endometriosis research’ by Peter Rogers and others gives recommendations of possible areas of research.³ To kickstart this research, as health secretary it’s your duty to emphasise the importance of the research and increase researchers’ awareness on endometriosis and why it would be a valuable field for them to study. Not only will this hopefully achieve some of the research goals outlined above, but it will also increase the populations awareness on endometriosis which will hopefully lead to more people recognising it and aiding sufferers.

For a disease that effects 10% of women, it’s upsetting to see the lack of engagement and awareness. Diagnosis and treatment should be easily accessible and effective. These women do not need to suffer in silence.

Yours sincerely,

Ella Odutoye

Bibliography

1. Barclay, S. Women’s Health Strategy for England. UK Parliament. July 20, 2023. Accessed Mar 16, 2023. https://hansard.parliament.uk/commons/2022-07-20/debates/CDEA7A57-0079-4A31-BD9C-E08867EC1F6B/Women’SHealthStrategyForEngland
2. Mirin, A. A. “Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health”. Journal of Women’s Health, 30(7), (2021): 956–963.
3. Whelan, E. “‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community”. Sociology of Health & Illness, 29(7), (2007): 957–982.
4. Rogers, P. A. W., D’Hooghe, T. M., Fazleabas, A., Gargett, C. E., Giudice, L. C., Montgomery, G. W., Rombauts, L., Salamonsen, L. A., & Zondervan, K. T. “Priorities for Endometriosis Research: Recommendations From an International Consensus Workshop”. Reproductive Sciences (Thousand Oaks, Calif.), 16(4), (2009): 335–346.
5. Amess, David. Rep. Endometriosis in the UK: Time for Change, 2020. https://www.endometriosis-uk.org/sites/default/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf. 
6. Charmaraman, L., Lee, A. J., & Erkut, S. ““What if You Already Know Everything About Sex?” Content Analysis of Questions From Early Adolescents in a Middle School Sex Education Program”. Journal of Adolescent Health, 50(5), (2012): 527–530.
7. Simoens, S., Dunselman, G., Dirksen, C., Hummelshoj, L., Bokor, A., Brandes, I., Brodszky, V., Canis, M., Colombo, G. L., DeLeire, T., Falcone, T., Graham, B., Halis, G., Horne, A., Kanj, O., Kjer, J. J., Kristensen, J., Lebovic, D., Mueller, M., Vigano, P., … D’Hooghe, T. “The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres”. Human reproduction (Oxford, England), 27(5), (2012): 1292–1299.
8. Madrigal, J. “The Water Bottle Conundrum: Is This Form of Pain Relief Bad for You?”. Endometriosis News. Dec 13, 2019. Accessed Mar 14, 2023. https://endometriosisnews.com/2019/12/13/the-water-bottle-conundrum-is-this-form-of-pain-relief-bad-for-you/

Image source = my own drawing