Endometriosis: 190 million unheard voices

She looks at me with distrust. To her, I am part of the medical establishment, a system that has so far failed her. 'They've sent me to you because they think it's all in my head, haven't they?' I begin to explain why she has been referred and how I can support her, and I invite her to share her personal Endometriosis journey.

I have heard a lot of those journeys over the last six years, and I now believe that Endometriosis is by far one of the most debilitating, painful chronic conditions I have encountered as a psychologist in clinical health psychology settings. Daily life with Endometriosis is beyond difficult. The stories that have been shared with me are a testament to the strength and perseverance of these women, and this lived experience with Endometriosis deserves a wider audience.  Too little is written about the inequality of health care, the experiences women have with the medical teams they encounter, and the all-encompassing psychological impact of this inflammatory disease.

It's time for these women to be heard, and feel heard.

As common as asthma and diabetes

Experts compare endometriosis to a benign cancer. It's an unusual cell mutation that can cause the endometrial-like tissue to form outside the uterine cavity – most commonly around the bladder, bowel or appendix, but there have been cases of this tissue being confined to the brain or lungs. Removal of this tissue is often offered, but this can lead to scarring which can result in more pain, and so the number of times this can be done is limited. It is a life-long, chronic condition with no cure, although women tend to find that it affects them less after the menopause. 10 per cent of women suffer with this condition worldwide, which makes it as common as asthma and diabetes; the impact is regarded the same as breast or ovarian cancer (Moradi et al., 2014).

I work in the clinical health psychology specialism of women's health for the North-East London NHS Foundation Trust (NELFT) and Barking, Havering & Redbridge University Trust (BHRUT), and frequently receive referrals from the BHRUT BCGE accredited Specialist Endometriosis Centre at Queen's Hospital. Usually, women referred to these specialist centres have 'deep' or 'stage 4' Endometriosis. This means that the Endometriosis is embedded in the abdomen and into structures in the pelvis and abdomen such as the bowel, bladder, nerves and blood vessels. Multi-disciplinary surgical intervention tends to be the treatment of choice for these women, but that's complex and there's an increased risk of injury to the structures. Some women have told me that they needed a stoma bag due to the bowel being perforated.

Despite the chronic and debilitating nature of this condition and the clear surgical limits and risks associated with it, research in this area is limited. However, the studies I do read consistently establish that women presenting with endometriosis are at risk for psychosocial disturbances and/or psychiatric distress.  The main clinical symptoms of endometriosis – pain, fatigue and infertility – are strongly influenced by psychosocial factors and have a significant impact on personal and professional quality of life.  Moradi et al. (2014) interviewed 35 Australian women and concluded that 'those living with chronic pelvic pain caused by endometriosis suffer emotionally, psychologically and socially and report feeling upset, angry, depressed, uncertain, weak, powerless, helpless, hopeless, defeated, disappointed, frustrated, exhausted and a burden to others.'

Those authors also reported that the average time to diagnosis is currently 8.1 years, and the women I see also confirm these delays and difficulties. They have often had multiple abdominal investigations (laparoscopies/MRI's amongst others), which may not be conclusive as period cycles and hormone treatments suppress symptoms. This all adds to the already damaging impact of feeling disbelieved or dismissed. In addition, most women with Endometriosis have also experienced trauma in their lives. This further adds to the already significant impact of this inflammatory condition. Trauma will make individuals more sensitive to pain and increase psychological distress. Women tend to have complex trauma presentations with a mix of unprocessed type 1 and 2 traumas, which often includes medical trauma. The latter can have a significant influence on a woman's attitude to medical care – they see much of the medical care they have received as inadequate and/or dismissive.

Silent suffering

I am often shocked to hear about the women's silent suffering; the daily pain associated with voiding their bowels or bladder, the usually negative effects of hormonal treatments, the at times arrogant and unempathic attitudes of medical staff they meet and the harrowing, complex surgeries they have to undergo, and which frequently do not alleviate the symptoms effectively. Often, it does not take long for the Endometriosis to return – for some only a few months, some one or two years – and this can cause anger, frustration and hopelessness. I often hear that wait lists for surgery are long and unpredictable, and that post surgery the after care is non-existent or highly unreliable. For many women who suffer such severe pain flare-ups every time they have their period, the idea of having a full hysterectomy or 'pelvic clearance' is appealing; however, this does not tend to get offered to women who are still of a reproductive age as priority is given to preserving fertility.

As it takes so long to be diagnosed, the effects of being dismissed from a young age is allowed to fester and it is clear from the women's stories how psychologically damaging this is to their self-view and the relationship with their bodies. What also becomes immediately clear from the women's narrative is that all domains in their lives are affected by endometriosis. Typically symptoms become apparent around 15-16 years of age, and the impact on marital/sexual relationships, social life, and physical and psychological aspects are reported by all the women I see but differ in order of priority. Younger sufferers report education attainment difficulties, older individuals speak of loss of income and reduced life opportunities.

During our therapy sessions the women express the varying ways endometriosis has impaired their quality of life. Many avoid entering into romantic relationships for fear of painful intercourse and subsequent rejection. Some sex-education is helpful in reducing the stigma and humiliation women may feel, as it explores different ways of viewing and engaging in sexual activity. Oftentimes, the clients tell me that they don't make plans to go out anymore as they feel they let their friends down too frequently due to the fatigue and pain, worrying that they may be regarded as an 'unreliable friend'.  This renders them lonely and isolated. Often they blame themselves for being 'weak'.

Sub- or infertility is one of the main consequences of endometriosis and worrying about the future and grieving for a life they cannot live is often voiced as the worst psychological symptom. In the workplace, endometriosis sufferers can find themselves in a difficult situation when employers do not recognise their condition as a disability under the Equality Act (2010). Frequent absences from work due to fatigue and pain often causes concerns as it is feared that they may be subject to an (unlawful) dismissal. Many women try to ignore their body's signals and continue to go into work, some telling me that they fainted at work due to the extreme pain they are experiencing. It goes without saying that all this causes additional stressors and strain and triggers familiar feelings of being dismissed, negatively impacting on pain and fatigue which can render these women feeling unjustly victimised giving rise to feelings of hopelessness and powerlessness. These work experiences are unfortunately quite common and frequently recalled during therapy.

Boom-bust

As the women I see have often lived with endometriosis for a long time without support, many have tried to find ways of coping with the debilitating nature of endometriosis themselves.  Their stories reveal the complex blend of physical, psychological and emotional suffering, which they describe as a 'constant battle'. This can be driven by a belief system that 'giving in' to endometriosis is 'being defeated', which results typically in unhelpful behaviours such as the 'boom-bust' activity cycle, doing too much on good days and paying for this for days after.

As the condition is chronic and enduring, many claim that it demands a level of 'grit' to achieve a reasonably normal life which means coping mechanisms that involve engaging in some of these unhelpful responses. Psychoeducation on the 'boom bust cycle' is helpful and tends to be well received, as many can see how unhelpful engaging in this behaviour pattern is – not just physically, but also psychologically. Many reflect that it does make them feel hopeless and defeated when they lie in bed recovering. It is not unusual to hear a woman describe a typical month as having 'One reasonably good week, two weeks of preparing for the period and its debilitating symptoms by working harder and do longer days which exhausts and depletes, and one week in bed when the period arrives and then to start all over again'.

Advising clients to pay attention to their body's signals and sensations may help them to promote pacing their activity level, which helps increase productivity but also helps the body heal – too much energy is lost to this tendency to overdo it when feeling better. Adding mindfulness meditation at this point can help as it promotes a growing awareness of bodily sensations and their changing nature, especially the sensation of pain, which many chronic pain sufferers perceive as continuous, and an 'attention magnet'.

However, my own experience of providing the typical pain management education is that it isn't helpful as endometriosis has excruciating pain flare-ups, together with a more persistent chronic lower-level pain. One 21-year-old client told me that she must visit A&E every time her period starts as they can treat her with morphine, the only drug that will help her. When pain is that severe, breathing exercises, meditation or even gentle exercise are often met with an understandable degree of resentment or even anger. Many women I meet see that as another dismissal – how can I understand the severity of pain they are experiencing if I think these activities can help!? Focusing on psychoeducation and providing a box of helpful pain management tools for the days when these can help, tends to be received better.  

When therapy progresses, the attitude towards and the effectiveness of pain management does change. This is largely due to the processing of trauma. All the women I work with report trauma in their personal history. Unprocessed trauma tends to impair many important bodily functions (decreasing immune function and increasing the inflammatory response, for example) but it also significantly increases psychological distress. EMDR (Eye Movement Desensitisation Reprocessing) is an effective way of helping the woman process the complex trauma. It often promotes a welcome self-compassionate stance – much of the trauma tends to be shame-based which causes and maintains the unhelpful coping behaviours and negative self-beliefs. In addition, addressing the pain by using the EMDR 'pain protocol' can provide profound insights into the psychological components of the pain. One woman concluded from the processing that she 'willed' the pain to persist as an absence of it would give rise to hope that it would not return. She explained that 'the hope would kill, not the pain'.

Women often report a distrust in their bodies as they feel 'it has let them down'. So, this change in attitude promotes a kinder relationship with their bodies which often materialises in a lifestyle adjustment such as working fewer hours, pacing and taking care instead of ignoring their own needs instead of ignoring them.

From 'telling their story' to a holistic approach

I have outlined some common themes in women's experiences, but there are of course many individual differences in how women cope with and adjust to the condition. I tend to integrate different psychological approaches to accommodate these. Many women tell me, though, that just 'telling their story' during the assessment phase helps. Medical appointments tend to skip a simple question such as 'how are you coping?' A referral for psychological support is therefore barely discussed. Being part of a support group such as a local Endometriosis UK group or the Facebook based 'Nancy's Nook' can help alleviate feelings of isolation and have the potential to normalise their experience. 

In my experience, Endometriosis sufferers are frequently some of the best medically informed patients. Due to the lack of information available, women want and need to find out more about their condition and this often leads to extensive research into aetiology, diagnostic practices, and best or available medical treatment options available. These questions are not typically addressed by the health care professionals they encounter.

Unfortunately, the lack of equality in health care is still driving patchy or inadequate care, especially during the earlier stages of the patient's journey leading to much unnecessary physical and psychological suffering. A holistic approach embracing body and mind will promote a better understanding of how endometriosis affects all domains in a woman's life, and guide service delivery and future research to meet the needs of 190 million women and teenagers worldwide with this condition. 

• Margreet Hendriks is a Chartered Psychologist and Associate Fellow of the British Psychological Society, and a HCPC registered psychologist.

Reference

Moradi. M., Parker M., Sneddon A.., Lopez V. & Ellwood D. (2014). Impact of endometriosis on women's lives: a qualitative study. BMC Women's Health, 14, 123.

Further resources

Endometriosis: the experts' guide to treat, manage and live well with your symptoms – Andrew Horne

(2018)

Youtube.com documentary: 'Endo what?  (2016) and 'Below the belt' (2023)

https://www.nhs.uk/conditions/adenomyosis/ - 'I have solely focused on Endometriosis in this article. For women suffering with Adenomyosis – when tissue from the lining of the uterus grows into the uterine wall – the symptoms can be just as debilitating and painful.'