Written Evidence submitted by Dr Veronique Griffith, The University of Manchester, Dr Andrea Ford, University of Edinburgh, and Dr Annalise Weckesser, Birmingham City University [WRH0047]
This submission of evidence will address the topic of women’s reproductive health via the specific condition of endometriosis. It will lay out the facts about the disparities and barriers in the treatment and diagnosis of endometriosis, and make the health, education, and scientific case for greater training, awareness, and investment in endometriosis and reproductive health more widely.
Together, the authors of this submission recently co-convened a high-profile multidisciplinary conference, Reframing Endometriosis, from which many of the recommendations are derived. The conference, funded by the Wellcome Trust and British Academy, brought together national and international leading authorities on endometriosis, including the heads of national and international endometriosis patient organisations, clinicians, and bio(medical), clinical and social science researchers.
A note on terminology: we refer mostly to patients as ‘women’, but endometriosis also affects transgender and non-binary individuals, and in rare cases cisgender, biological men. Indeed, as we will discuss, characterisation of endometriosis as a “women’s disease” is harmful, and can create additional barriers to diagnosis and treatment on top of those already experienced by patients.
Endometriosis is a chronic inflammatory condition that affects an estimated 10% of all people assigned female at birth. The condition causes tissue similar to the lining of the uterus to grow elsewhere – including on the ovaries, intestines, bladder, and bowels. Symptoms can include severe pelvic pain, painful periods, pain during sex, infertility, and fatigue.
Patients living with endometriosis face inconsistencies in its diagnosis and management. It is relatively ignored in government policy and research funding – both in the UK, and globally. This absence of knowledge is a result of, and contributes to, structural, cultural, and political processes which undervalue the experiences of women, menstruation, and pain.
This combination of a lack of awareness, research, and understanding around endometriosis has led some to describe it as a ‘missed disease’.[2]
This section draws on evidence in a book by Dr Griffith; Healers and Patients Talk – Narratives of a Chronic Gynecological Disease.[3]
In the UK, the average time to diagnosis from onset of symptoms is around 8 years[4], but can take up to 12[5], or even 203 years. This delay causes patients to struggle with continued pain, in isolation, and with feelings that they are ‘weak’ compared to other women, often doubting themselves in the process. The reasons for diagnostic delay in endometriosis are multiple, and it has been linked to both doctors/healthcare professionals and patients, although much of the delay occurs after the patient has sought care.[6]
Patient-related delays are largely related to stigma around the discussion of menstruation, sexual intercourse, and childlessness, which prompt patients to avoid seeking help. These will be discussed in more detail in the next section of this submission, but one key finding from previous research is the delay in diagnosis of endometriosis because of normalisation of menstrual pain.[7],[8] With pain during periods seen as normal, women may also normalise or dismiss one another’s menstrual pain.4 Patients have linked this menstrual communication taboo to being unable to speak about endometriosis and their symptoms as they relate to menstruation.
This represents a barrier to medical care as patients and serves to increase diagnostic and treatment delays ultimately increasing stress and worsening endometriosis symptoms.
Another stigma which creates a barrier to diagnosis and treatment is childlessness. While some patients with endometriosis cannot have children, they still want to. Other patients do not want children but feel that their biomedical treatment has been in large part linked to the assumption that they will want children at some point. Even if they have decided not to have children, it is often assumed by medical professionals that they may change their minds in the future.
Stigma relating to voluntary childlessness appears to originate from the medical professionals themselves and directly impacts clinical care. Patients report that medical professionals took their symptoms more seriously when patients were looking to get pregnant.
Patients also felt medical professionals did not believe or trust women’s decisions about having children or not. For them, medical decisions that could have improved their quality of life were not taken, in order to preserve fertility – regardless of their desires.
These women had no intention of getting pregnant and expressed frustrations that some surgical treatment options that might have relieved endometriosis symptoms but resulted in sterilisation were denied to them.
Women stated that medical professionals expected them to change their minds, as if it were not possible for a woman to prefer or choose childlessness. The stress linked to the social stigma of childlessness through infertility, or to reactions to voluntary childlessness, likely increases these women’s inability to have children if they do wish to, since it has been shown that stress hormones interact with hormones responsible for normal ovulatory cycles.[9] Women with endometriosis who encounter less than understanding and supportive responses to their decisions and experiences with fertility from health professionals and friends or family members may in fact experience more endometriosis symptoms, as the resulting stigma-driven stress has an impact on their reproductive hormones.
At the medical level, eight factors may contribute to delays in diagnosis:
In addition, the belief by many clinicians that endometriosis does not present in teenagers may also increase time to diagnosis[10], with as many as 44% of women reporting symptoms of endometriosis to their doctors before age 20 and only 3.5% diagnosed before reaching 20 years of age.[11]
Patients report negative experiences in primary care with GPs adopting two main negative attitudes. The first was that patients’ symptoms were either dismissed as period pain or as being psychological in origin. The second attitude reported by patients was the normalisation of symptoms which included being told that menstrual pain was normal and that “you are unlucky to suffer from bad periods”.3 Such forms of dismissal of symptoms as psychiatric in origin or as ‘normal’ are commonly reported in endometriosis care.
Catalysts allowing women to receive the endometriosis label successfully, termed ‘circuit-breakers’6, include:
These ‘circuit-breakers’ allowed women’s recognition that what they were experiencing was problematic and prompted their persistent search for care.
Research led by Dr Griffith – involving interviews and questionnaire responses from both women with endometriosis, and gynaecologists – found that stress and stigma around endometriosis combine to have a greater negative health impact than would otherwise occur (a ‘syndemic’ model).[12],[13] Through a series of biological pathways, stress contributes to worsening endometriosis symptoms, which in turn increase stress. For instance, rat models of endometriosis have demonstrated that higher levels of stress resulted in an increase in the size and number of endometriotic cysts and vesicles.[14]
Combined with gendered stigma around endometriosis, which also increases stress, these pathways form the endometriosis-stress-stigma syndemic.
In the interviews and questionnaire responses, women reported experiencing communication taboos related to stigma associated with three aspects of endometriosis: menstruation, dyspareunia (genital pain before, during, or after sexual intercourse), and involuntary childlessness. These taboos increased levels of perceived stress in women with endometriosis.
Participants also reported that the stigmatisation of endometriosis leads women to hide their illness, leading to a perception that they are “suffering in silence”. This ultimately exacerbates their disease progression, and the severity of symptoms. They reported clear lines between who could, and could not, be told certain information, as well as different levels of information, drawing a distinction between general understanding of endometriosis, and details about their specific experiences of the disease.
A majority of women in the study reported feeling unable to discuss the condition, stating; “It’s not something you talk about, is it?” This was linked to a perception of endometriosis as a “women’s disease”, or about “women’s bits”, with one participating saying:
“I struggled socially in my teens because I didn’t go out as much as my friends. It also made things tricky with gatherings if I’d had to cry off certain activities and been unable to explain why because I don’t necessarily know people that well, or because middle-aged men were involved who would be uncomfortable with being told about “women’s things”! Boyfriends sometimes found it tough too, if I didn’t feel much like being intimate at times – I’m lucky that my husband is very patient and understanding.”
Women’s suffering is seen as acceptable, thus normalising the stress-producing stigmatisation of their lived experiences. This is a form of structural violence – because endometriosis is linked exclusively to women, broader society does not want to discuss it, ultimately worsening the experience of the disease.
This extended to women’s sexual lives as well. Women who participated in the study discussed their experiences of pain during sex, with 10 women saying they felt pressure to pretend to enjoy the sex. This pressure was not necessarily from their male partners, but rather, a result of an unspoken society norm to conform to their expected role as sexual partners. One woman said:
“I’m not sure if I should tell my boyfriend that it hurts again to have intercourse. I’ve just been putting up with it, I lock myself in the bathroom afterwards and have a bath which helps a bit but… I don’t think he knows. I want the lights off so he won’t see the tears.”
Other women had similar experiences, or feared that their partners would leave them because of decreased sexual activity. It was not uncommon for women to feel that their inability to have or enjoy sex “challenges my femininity”. This stigma extended to seeking medical help, with many reporting going to the doctor with the intention of asking about pain during sex – but leaving without approaching the topic. One participant said “It was like trying to talk about sex with my father”.
However, there are some signs that this is changing, with women who participated in the study – as well as those who take part in online forums for endometriosis patients – showing an increasing confidence in recognising and challenging the taboo around reproductive health issues. One participant in the study said:
“I have no “fear” anymore. If people are uncomfortable I don’t care anymore. I don’t want anyone lese to have to go through what I went through. So I talk about it. If I tell just one person about endometriosis then maybe that knowledge will trickle down. If just one person had talked about endometriosis at work for example during lunch I might have thought “Oh, I have that” I have that even had I not wanted to join in the conversation. Or if someone talked about their periods and those were normal I would thought oh is my period not normal then. Maybe I would have gone to the GP sooner?”
While encouraging, the onus should not be on women to challenge these barriers. Change must be led from the top, with policymakers and public health officials addressing the stigma and taboo around endometriosis, and reproductive health in general, through targeted training and awareness campaigns.
Endometriosis has long been considered a disease of white, career women and in the past was known as the ‘career-women’s disease’. The characterisation of endometriosis as a disease of white, educated, and heterosexual women is problematic and misleading.
As highlighted above, the average waiting time for a diagnosis of endometriosis is between 8 and 12 years. However, for Black women, this picture is even worse, with research showing women from Black ethnic backgrounds are 50% less likely to be diagnosed with endometriosis than white women.[15],[16] A study from the US in 2021 found that, when they are diagnosed, Black women receive their diagnosis on average two and a half years later than white women.[17]
Analysis by Drs Weckesser and Griffith has highlighted barriers to care for Black women which may be a factor in lower diagnosis rates of endometriosis, including[18]:
This research adds to a wider body of evidence on barriers to gynaecological care, systemic racism in the medical field, and other factors which combine to limit diagnoses for Black women. For example, a survey in the UK in 2022 found that almost two-thirds of Black respondents had experience prejudice from doctors and other staff in healthcare settings, rising to three-quarters among respondents aged 18 to 34.[19] The survey also found that Black women experience dismissive attitudes towards their pain, which is a result of a misguided stereotype of Black women as being somehow more resilient to pain – an unfounded idea which has its roots in 19th Century medical experiments on slaves in the United States.[20]
The outcome is that Black women may suffer with endometriosis for longer before getting a diagnosis and treatment – if at all.
There are specific considerations in endometriosis care for subpopulations of patients that need to be addressed. Patients whose identities do not fit heteronormative notions struggle to feel welcomed or comfortable in settings set up for ‘women’s health’, making a clinic visit something difficult and often triggering. Similarly, patients who are not having heterosexual penetrative sexual intercourse, are likely to struggle to discuss pain linked to sex (a main symptom of endometriosis), meaning that this symptom may not be addressed in their clinical care.[21]
Often, waiting areas for patients requiring an ultrasound or other scan to diagnose endometriosis are shared with general gynaecology and obstetrics, meaning that endometriosis patients may wait in the same space as patients who are currently pregnant. Consider, for example, a patient who has recently been diagnosed with endometriosis and has recently been told they may not be able to have children.
Patients report this as distressing, potentially triggering, and stressful, given that endometriosis is linked to infertility.
Patients may recall these negative experiences of care going forward, which may cause patients to hesitate to report new or different pain symptoms that may require evaluation. Such experiences may contribute to delayed treatment of endometriosis, but may also limit evaluation of other causes of new pain (for example a ruptured ovarian cyst, ovarian torsion, or appendicitis – all of which may present similarly to an endometriosis exacerbation).
We suggest that this is something that can be quite easily addressed by providing 2 different waiting areas for ultrasound/scans in gynaecology/obstetrics.
Similarly, for endometriosis patients requiring a longer stay in hospital, they are often placed on the same ward as obstetrics patients. As stated above, this is particularly difficult given the link of endometriosis to infertility. But, unlike the example above of an ultrasound scan waiting area, patients may be admitted to hospital for several days, particularly if they are recovering from surgery for endometriosis including a hysterectomy (while hysterectomy is known not to cure endometriosis, it is still sometimes used as a treatment).
Additionally, being in the same room as a patient who have recently given birth will likely overhear many congratulating phone calls or visits and may additionally see the baby wheeled in several times a day. This can be extremely upsetting for patients and can impact an already stressful experience particularly post-surgery.
We therefore suggest that a policy be put in place to prioritise the separation of obstetrics and gynaecology patients on inpatient wards to avoid these added stresses to patients.
Diagnosis and treatment delays in endometriosis are largely impacted by long waiting times within the NHS. There are several key moments when patients may face long waiting times:
We therefore suggest that in the short term referrals to specialists for endometriosis care be done concurrently to the various specialists (particularly gynaecology, urology, and gastroenterology) by GPs.
In the long term, we suggest referrals from GPs be sent directly to a centralised endometriosis clinic with direct/internal access to related subspecialty care.
A specialised endometriosis clinic would then serve as a central pool of all endometriosis-related sub-specialties where patients would be attended to by all the necessary specialists in a single extended appointment. Breast cancer care is a good example of such a model of clinical care.
As discussed, many of the additional burdens placed on endometriosis patients arise from a lack of awareness – on both their part, and that of healthcare staff. In turn, this is a result of social taboos on discussion of reproductive health. We suggest the following interventions across health and education policy, and research practices.
Fuller menstrual health education should be provided in schools, to set the stage for later life.
Mandatory training for healthcare professionals and those who teach about menstrual health in schools, including the historical development of current menstrual health knowledge and attitudes, and the impact of these on people who menstruate.
An increase in funding and support for research on non-invasive diagnostic methods, the prevalence and impact of menstrual health related conditions, with a particular focus on women historically left out of the endometriosis diagnosis such as women from racially marginalised populations, adolescents, post-menopausal women, and non-binary/transgender patients.
A recognition by policymakers and public health officials of the systemic barriers to racially marginalised women in accessing care.
Endometriosis should not be treated/classified as solely a gynaecological disorder – and the damage done from it having been classified as such should be addressed and rectified.
Many people experiencing endometriosis, or endo-like symptoms, self-manage. This is inevitable given the chronic nature of the condition and the lack of institutional support.
[1] Randhawa, Hewett, Weckesser, et al. (2021) Secondary School Girls’ Experiences of Menstruation and Awareness of Endometriosis: a Cross-Sectional Study. Journal of Pediatric and Adolescent Gynecology. 33(5):643-648.
[2] Hudson, N. (2022) “The Missed Disease? Endometriosis as an Example of ‘Undone Science’.” Reprod Biomed Soc Online 14: 20–27
[3] Griffith, V. A.S(2019). Healers and Patients Talk – Narratives of a Chronic Gynecological Disease. London: Lexington Books. ISBN 978‐1‐7936‐0187‐2
[4] NICE. National Institute for Health and Clinical Excellence; 2017. Endometriosis: Diagnosis and Management. Full Guideline. https://www.nice.org.uk/guidance/ng73.
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September 2023