Few diagnoses are more upsetting for women than endometriosis. Obviously, the different female cancers, cardiovascular 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 creating a woman more prone to some of the other devastating health problems. A new study by Monash University researchers confirms just how burdensome an analysis of endometriosis can be.
According to the World Endometriosis Research Foundation, endometriosis is a disease by which tissue like the lining from the uterus (called “the endometrium”) can be found in locations outside the womb, where it induces a chronic reaction. Most commonly, endometriosis is located within the abdominopelvic region including ovaries, bowels, bladder and lining from the pelvis, however the disease can also be diagnosed in distant regions like 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 every aspect of an individual’s general physical, mental and social well-being. Even though there isn’t any definitive cause of endometriosis, chances are that certain genes predispose a person 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, resulting in 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 get a proper diagnosis of endometriosis sooner, that could result in quicker assist in managing pain along with other symptoms. Moreover, the study found that endometriosis affected all aspects of a woman’s life from love life to non-public relationships, work life, and general emotional well-being C which might be minimized through timely diagnosis and effective treatment.
The last major finding from the study was that women felt angry and even frustrated once they had experiences with doctors who misdiagnosed, did not diagnose, delayed proper diagnosis of endometriosis, or just generally didn’t pay attention to the concerns, symptoms, and experiences. They mostly just wanted their doctors to pay attention more carefully. Women also felt frustration in the insufficient effectiveness and side effects of treatments.
The following stage of Ms. Young’s research will “gain a comprehensive understanding of endometriosis as felt by diverse groups of women.” She’ll do that 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 precisely 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 is going.
For more information on the study, go to the Journal of Family Planning & Reproductive Health Care.
I heartily commend Ms. Young on her valuable research. Often mistakenly described as ‘insignificant killer cramps,’ the truth is endometriosis is really a major public health burden, exacting unfathomable tangible and intangible costs from society each year.
Teens remain probably the most under-diagnosed and ignored population, but many those who have a problem with the disease are very well-versed within the deficits surrounding timely diagnoses and use of effective care and support.
Many have had to fight for a long time, 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 around the disease continues to pervade our culture. Pelvic pain particularly remains enshrouded by myths and misinformation; this lack of conversation continues to bring about the lengthy delays in proper care for that disease.
Support of these with endometriosis generally remains a travesty. Inadequate and differing perceptions between clinicians vs. patients on pain and symptoms continue to result in insufficient focus on complaints. Care pathways continue to be encumbered by insurer limitations, injudicious withholding of timely referrals, deficient experience and training, disjointed use of treatment and poor computer. Redundant and insufficient translational research efforts have resulted in little progress. Stakeholder engagement in the research and educational processes all around the disease remain sorely lacking. Significant diagnostic delays and high treatment failures still frustrate both providers and those affected alike. Normalization and/or dismissal of symptoms, “watchful waiting” and other ineffective responses to an individual’s complaints is only going to still further delay appropriate care. Early and effective intervention is absolutely important to the correct proper care of those with the disease; indeed, quality methods to diagnosis and treatment at symptom onset may well prevent long-term complications and should function as the foremost objective of any plan for treatment.
As to ensure maximum support of the person with endometriosis and improve outcomes, the disease must be addressed from the multidisciplinary, multicollaborative approach at the first signs that something might be wrong. In order for those affected by endometriosis to create educated choices regarding their health pathways, it is important to keep your dialogue about the disease and patient voices out front. Instead of just asking limited or standardized questions, more clinicians should be hearing people narrative and tailoring treatment appropriately. Studies like Ms. Young’s reveal what so many of us know C but so many providers still need be advised of.