"I must say that the experience (endometriosis) has been the most challenging physically, mentally, emotionally, and spiritually that I have been through. It is stressful in every way," states one participant of the study in The Endometriosis Stories: A Narrative Analysis, by Ruth Mortimer, 2002.
Psychosocial Issues
As a chronic condition, endometriosis is associated with psychological issues, particularly those related to pain. Other factors of psychosocial importance are ability to work, involvement in leisure activities, relationships, and self-image. Until recent years, much research focused upon women with chronic pelvic pain, and it has been difficult to draw strong conclusions from findings in relation to those women with endometriosis, in particular. However, it is reasonable to say that for women who experience chronic pelvic pain there may well be negative effects such as anxiety, depression which, in turn, can impact adversely on marital and family functioning (Weinstein, 1987).
While it is understood that not all women with endometriosis suffer pain, for those who do, it is not necessarily confined to the pelvic area. For example, endometriotic implants can cause severe pain during sexual intercourse. Painful intercourse can lead to relationship difficulties such as a breakdown in communication, loss of intimacy, loss of romance, distress and, for single women, possible avoidance of new relationships.
A vast number of reports received by the Endometriosis Foundation attest to women becoming depressed, feeling misunderstood, feeling helpless and isolated, not performing well at work and high rates of absenteeism (Ballweg, 1995).
Identity Issues
The Endometriosis Stories, research based on interviews with twelve women with endometriosis in the Manawatu region of New Zealand, yielded the following issues with respect to a challenge to identity.
- Infertility - not being able to conceive denies a woman the role of motherhood.
- Women may feel like a victim by feeling helpless, and lacking control over their situations.
- Some participants felt less of a woman when not able to have children.
- Relationships can become strained, such as with a partner, children, parents, colleagues and the doctor-patient relationship.
- Being treated in a dismissive and disrespectful way by the medical profession can lead to feelings of distress and lowered self-confidence.
- Not being believed by GPs can lead to a long period before diagnosis - several women spoke of being left feeling it was all in their heads, that it was psychological.
- Missing out on activities during adolescence and young adulthood during the critical stage of identity formation can affect relationships and self-esteem.
- Unpleasant menstrual symptoms such as 'flooding' can leave some women with a negative body image.
- Some participants could not work or only part-time - this can affect identity in relation to roles.
- Diagnosis, support, understanding and practical help can aid self-empowerment, strengthening of self-esteem, and opportunity to reshape a stronger sense of identity.
- Despite difficult symptoms and adverse experiences, some women did not perceive themselves as victims and did not express themselves in ways that suggested a threat to their identities.
References:
Mary Lou Ballweg. Alternative Treatments for Endometriosis. In Endometriosis advanced management and surgical techniques (pp.275-285). New York: Springer-Verlag, 1995.
Ruth Mortimer. The Endometriosis Stories: A Narrative Analysis. Doctoral Dissertation. Palmerston North: Massey University, 2002.
K. Weinstein. Living with Endometriosis. Massachusetts: Addison-Wesley, 1987.
