Just How Terrible Is Endometriosis?

Rayshell Clapper for redOrbit.com – Your Universe Online – With expert commentary by Heather C. Guidone, Program Director, Center for Endometriosis Care
Few diagnoses are more upsetting for women than endometriosis. Of course, the various female cancers, heart disease, and other life-threatening diseases and disorders are devastating, but endometriosis is a diagnosis that may well mean lifelong troubles ranging from menstrual pain to bowel or bladder dysfunction to infertility, while also possibly making a woman more prone to some of the other devastating health issues. A new study by Monash University researchers confirms just how burdensome a diagnosis of endometriosis can be.
According to the World Endometriosis Research Foundation, endometriosis is a disease in which tissue similar to the lining of the uterus (called “the endometrium”) is found in locations outside the womb, where it induces a chronic reaction. Most commonly, endometriosis is found within the abdominopelvic region including ovaries, bowels, bladder and lining of the pelvis, but the disease can also be diagnosed in distant regions such as the lungs or diaphragm.
Endometriosis often results in chronic pelvic pain, painful periods, pain with ovulation, pain associated with sex, fatigue and infertility, and the disease can negatively impact all aspects of an individual’s general physical, mental and social well-being. Though there is no definitive cause of endometriosis, it is likely that certain genes predispose an individual to the disease. There is no known prevention, and no universal cure.
Though signs of endometriosis often present early in life, symptoms are routinely dismissed by caregivers and clinicians alike, leading to lengthy delays in diagnosis. The Monash University research, led by Kate Young, found that if women approached their doctors by describing symptoms as fertility-related rather than menstrual-related, they are more likely to receive a proper diagnosis of endometriosis sooner, which could lead to quicker help in managing pain and other symptoms. Moreover, the study found that endometriosis affected all aspects of a woman’s life – from sex life to personal relationships, work life, and general emotional well-being – all of which could be minimized through timely diagnosis and effective treatment.
The last major finding of the study was that women felt angry and even frustrated when they had experiences with doctors who misdiagnosed, did not diagnose, delayed diagnosis of endometriosis, or just generally did not listen to the concerns, symptoms, and experiences. They mostly just wanted their doctors to listen more carefully. Women also felt frustration at the lack of effectiveness and side effects of treatments.
The next stage of Ms. Young’s research will “gain a comprehensive understanding of endometriosis as experienced by diverse groups of women.” She will do this by conducting interviews with women of different ethnic and cultural backgrounds as well as seeking information from general practitioners in rural and urban settings.
The Monash study demonstrates just how far-reaching the impact of endometriosis can be, on all levels. Though Ms. Young’s research is not complete, this study has shown her where future research should go.
For more information on the study, go to the Journal of Family Planning & Reproductive Health Care.
Expert commentary provided by Heather C. Guidone, Program Director, Center for Endometriosis Care
I heartily commend Ms. Young on her valuable research. Often mistakenly described as ‘insignificant killer cramps,’ in reality endometriosis is a major public health burden, exacting unfathomable tangible and intangible costs from society each year.
Teens remain the most under-diagnosed and ignored population, but most individuals who struggle with the disease are quite well-versed in the deficits surrounding timely diagnoses and access to effective care and support.
Many have had to fight for years, every step of the way, to get their pain and symptoms addressed. The damaging impact of endometriosis on quality of life, fertility, physical and emotional health, sexual function, and general well-being is staggering – yet a deep-rooted silence on the disease continues to pervade our culture. Pelvic pain in particular remains enshrouded by myths and misinformation; this lack of conversation continues to contribute to the lengthy delays in proper care for the disease.
Support of those with endometriosis in general remains a travesty. Inadequate and differing perceptions between clinicians vs. patients on pain and symptoms continue to result in insufficient attention to complaints. Care pathways continue to be encumbered by insurer limitations, injudicious withholding of timely referrals, deficient experience and training, disjointed access to treatment and poor information systems. Redundant – and lack of translational – research efforts have led to little progress. Stakeholder engagement in the research and educational processes surrounding the disease remain sorely lacking. Significant diagnostic delays and high treatment failures continue to frustrate both providers and those affected alike. Normalization and/or dismissal of symptoms, “watchful waiting” and other ineffective responses to an individual’s complaints will only continue to further delay appropriate care. Early and effective intervention is absolutely critical to the proper care of those with the disease; indeed, quality approaches to diagnosis and treatment at symptom onset may well prevent long-term complications and should be the foremost goal of any treatment plan.
If we are to ensure maximum support of a person with endometriosis and improve outcomes, the disease needs to be addressed from a multidisciplinary, multicollaborative approach at the first signs that something might be wrong. In order for those affected by endometriosis to make educated choices about their health pathways, it is important to keep the dialogue about the disease – and patient voices – out front. Instead of just asking limited or standardized questions, more clinicians should be listening to the individual’s narrative and tailoring treatment appropriately. Studies like Ms. Young’s reveal what so many of us already know – but so many providers still need to be made aware of.