A recent headline in a national newspaper stated ‘Endometriosis; not just a heavy period’. This article was timely as the combination of the difficulty in diagnosing endometriosis and the general lack of understanding about what it is and how it affects women can have a significant impact on the quality of life and the emotional and psychological well-being of the women diagnosed with the condition.
Experts compare endometriosis to a benign cancer; an unusual cell mutation that can cause the endometrium tissue to form most commonly around the bladder, bowel or appendix but there have been isolated cases of this tissue being confined to the brain or lungs. Removal of this tissue is often offered but 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 condition with no cure but women tend to find that it affects them less after the menopause. 10% of women suffer with this condition worldwide which makes it as common as asthma and diabetes and the impact of it is regarded the same as breast or ovarian cancer.
I work as a highly specialist counselling psychologist in the maternity & gynaecology psychology service for Barking, Havering & Redbridge University Trust (BHRUT) and frequently receive referrals requesting psychological intervention for women with endometriosis. Research in this area is limited however, the existing research I read consistently established that there is an association between psychiatric disturbances and endometriosis which determines that women presenting with endometriosis are at risk for psychosocial disturbances and/or psychiatric distress. The research generally agreed that the main clinical symptoms of endometriosis; pain, fatigue and infertility are strongly influenced by psycho-social factors and have a significant impact on personal and professional quality of life. Moradi et al (2014) who interviewed 35 Australian women 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.’ Furthermore, the authors reported that the average delay time to diagnosis is currently 8.1 years.
The referrals from the endometriosis team often reflect the psycho-social impact of endometriosis; referrers often also highlight the delays and difficulties in diagnosing this condition. These delays have often involved multiple abdominal investigations (laparoscopies/MRI’s amongst others) which may not be conclusive as period cycles and hormone treatments suppress symptoms adding to the already damaging impact of feeling disbelieved or dismissed. To illustrate, here are a couple of examples (names have been changed and identifiable information removed):
Alison: ‘Long standing lower abdominal pain, pelvic pain and painful sexual intercourse. This lady has suffered with pelvic pain since she was 16 years old and has been progressively getting worse in the last two years. Her symptoms have a significant impact in her daily life, social life and relationship. She was very tearful during her appointment and she tells me she feels isolated and her relationship is really affected by the symptoms and is unable to cope with the pain. She had multiple laparoscopies in the past (5x); first laparoscopy was when she was just 15 years old. She also had an appendectomy at the age of 14.
Patient suffers with increasing pelvic pain. MRI was discussed on MDT. MRI shows no evidence of endometriosis. Outcome discussed with her and she was offered to have Mirena coil however, she currently has Mirena in-situe which didn’t help with her symptoms’.
Charlotte: ‘Patient is very young with no children. Due to her pain she wants to have pelvic clearance. She is aware of the consequences of having a hysterectomy and due to her age and not having children it is unlikely to be offered to her at this time. Her condition also has significant impact on her life. She is unable to socialise with friends and has cancelled meetings with friends on many occasions because of her pain. She has been avoiding being in a relationship because sexual intercourse is very painful. The pain medication she is on (oromoph solution, tramadol, mefenamic acid) makes her feel drowsy resulting in having to take sick leave as when she takes the medication she is not able to get out of bed’.
When I first meet the clients at the initial psychological assessment appointment clients typically report finally ‘feeling validated and heard’ as their patient journey has often involved having been dismissed for ‘just having heavy period pains’ by health professionals. What also becomes immediately clear from the women’s narrative is that all domains in their lives are affected by endometriosis as emphasised by the research and usually this starts to happen from quite a young age (typically symptoms become apparent around 15-16 years of age). 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 the therapy sessions the women express the varying ways endometriosis has impaired their quality of life. The severe chronic pelvic pain affects their level of social and romantic interaction with many avoiding entering into romantic relationships for fear of painful intercourse and subsequent rejection. Some sex-education is therefore helpful in reducing the stigma and humiliation women may feel in this area as it explores different ways of viewing and engaging in sexual activity.
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 expressed as the worst symptom in psychologically. 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) resulting in potentially unlawful dismissal due to frequent absences from work which is often caused by pain and fatigue. This additional stress and anxiety leads to an increase in pain symptoms 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.
As women have often lived with endometriosis for a long time without support, many women I see have tried to find ways of coping with the sometimes unpredictable and debilitating nature of endometriosis themselves. Their stories reveal the complex blend of physical, psychological and emotional suffering which they describe as a ‘constant battle’ which 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. However, as the condition is chronic and enduring, it demands a level of ‘grit’ in order to achieve a reasonably normal life which can necessitate developing coping mechanisms that involve engaging in some of these unhelpful responses to the condition. Therefore, an integration of pain management, stress relief and psychological approaches would mitigate these responses and be therefore of most benefit to them.
Psychological education on pain which focuses on separating the emotional suffering from the direct physical experience and the influence of anxiety and stress on pain is usually discussed during the first sessions and this typically changes the way the woman relates to her pain which can reduce pain levels as psychological distress caused by her pain is reduced. An understanding of the ‘boom-bust cycle’ by paying attention to her body’s sensations may help her to promote pacing her activity level. Research has particularly highlighted the effectiveness of body-mind approaches and so mindfulness meditation is also introduced early in therapy to reduce stress and promote relaxation reducing pain levels to a more manageable level. Furthermore, mindfulness typically promotes an awareness of the connection between body and mind and it will therefore facilitate the growing awareness of bodily sensations and their changing nature especially the sensation of pain which many chronic pain sufferers perceive as continuous. The mind-set of needing to ‘battle on’ and engage in these unhelpful behavioural patterns do impact on a woman’s psychological health; low mood, depression, excessive worrying and catastrophizing are often expressed and cognitive behavioural therapy can especially be helpful to manage mood and symptoms of anxiety by challenging particular thoughts and behaviours. Feelings of isolation and hopelessness often diminish after the client has started to implement these approaches as a level of control over their lives returns and a more positive outlook for the future is emerging.
Even though there are common themes in women’s experiences, there are many individual differences in how women cope with and adjust to the condition and I therefore tend to integrate different psychological approaches to accommodate these. I have added some resources I have been made aware of below as having access to a wider network of support where women can share their experiences may further alleviate feelings of isolation and can normalise one’s experience.
Unfortunately misconceptions and lack of understanding is still driving much of the (lack of) care especially during the earlier stages of the patient’s journey leading to much unnecessary physical and psychological suffering. A better understanding of how endometriosis affects all domains in a woman’s life can help decrease the negative impact of endometriosis by guiding service delivery and future research to meet more effectively the needs of women and teenagers with this condition.
References:
Moradi. M., Parker M., Sneddon A.., Lopez V. & Ellwood D.: ‘Impact of endometriosis on women’s lives: a qualitative study’ (2014) BMC Women’s Health 2014 14:123
Resources for patients
Endometriosis: the experts’ guide to treat, manage and live well with your symptoms – Andrew Horne (2018)
Nancy’s nook – Facebook – personal journey of endometriosis sufferer
Endometriosis UK charity
Youtube.com documentary: ‘Endo what? (2016)