The ‘Second Cousins’ of Women’s Reproductive Health
Miriam Franco, Psy.D.
Last January, my daughter and I marched at The Women’s March in Washington DC. We were there to show solidarity among American women of all generations to have our voice and concerns heard by our government.
This January my daughter approaches 30. Roughly thirty years ago, I defended my dissertation on risk perception of cervical and breast cancer among a sample of older women. Great advancements had been made with Pap smear and mammography screenings yet women of lower income and of older ages were under the radar of the healthcare system. My dissertation was timely then. The 2000 year objective was underway, organized by baby boomers who persuaded the U.S. congress to finally take female reproductive health more seriously and to cover the cost of these screenings to protect women who lacked health coverage to do so.
Great strides occurred in these areas of women’s reproductive health over these past years. By the time my daughter came of age, enormous progress had occurred in the research, education, treatment and access to care for women with breast cancer. A preventive vaccine became available to slow the spread of cervical cancer. This progress was long overdue given the fatality rates of cervical cancer in a country that had the means to cure it and the mortality rate of so many women from breast cancer.
At the first Women’s March, the public spin on women’s reproductive health was essentially limited to birth control and abortion rights. I suspect in most American households, the phrase “women’s reproductive health” is a stand in for pro-choice and birth control. Topics certainly worthy of focus, and yet major pelvic health conditions of women, affecting women from adolescence throughout their life span, don’t tend to be recognized or included when reference to Women’s Reproductive Health occurs.
It seems that major, non-fatal but often debilitating women’s reproductive health conditions, such as Endometriosis (Endo) and Interstitial Cystitis (IC) hardly emerge into the public consciousness, unless you know someone who has it. They are the poor second cousins of women’s reproductive health though one out of every ten women has Endo and over 1-2 million women each year suffer from IC in this country. Many also experience Pelvic Floor Dysfunction as a result of these diseases. These aren’t cancers or auto immune disorders. They don’t result from personal or lifestyle choices. They appear to be genetic. And yet because they are associated with pelvic health or menstruation, they are shrouded in misinformation, shame, long delays in diagnosis and inadequate care and support. They are underfunded, under researched, under treated and underappreciated for the toll they take on girls’ and women’s lives.
Painful or killer cramps are not normal! Endo is a condition in which tissues “that resemble the lining inside the uterus develop elsewhere in the body where they don’t belong and induce a chronic inflammatory reaction that may result in scar tissue in the majority of cases.” (Endometriosis.org; Center for Endometriosis Care.org). Endo symptoms range from paralyzing menstrual and/or ovulation pain, gastro-intestinal bouts of bloating, diarrhea, nausea, constipation, irregular or excessive bleeding, bladder issues and fatigue. According to Brosens, Gordts & Benagiano, (2013), symptoms typically start 5 months post menarche and for some girls pain begins before their first menstrual cycle. Women have a higher risk of it if their mothers or sisters have it and only some may experience infertility as a result of it.
IC , often referred to as painful bladder syndrome, is a chronic condition. Symptoms typically include pain and pressure in the bladder, lower abdomen and pelvic area, painful intercourse, lower urinary tract infections, fatigue, urgency / frequency to urinate that persist for more than a 6 week period and can be as frequent as 40 times a day. Discomfort can be so intense that it is estimated that only half of sufferers work full-time . Treatments vary according to symptoms and symptom course within the individual. They include physical therapy, antihistamines, antidepressants, bladder instillation, immuno-suppressants, pain management, botox and complementary interventions of diet and yoga.
Endo and IC are lifelong conditions with no cure. Both can wreak havoc on a woman’s mood, self- esteem, and management of her daily life. Not to mention, the frustration of trying to find competent MDs who know how to talk to them and listen to them. In several recent studies, women with Endo were found to have a higher risk of developing anxiety and depression than in any other gynecologic condition. Heightened anxiety levels were found to reduce their tolerance for pain and to change the way they perceive their pain. It also appears to increase their sensitivity to physical stimuli in general. In a study on IC and its effect on mood, higher rates of depression and hypochondriasis were noted among IC patients compared to the average woman. Higher levels of pain appear to be correlated with higher levels of anxiety among this population. Long duration of symptoms is associated with higher admitted levels of depression and suicidal ideation (Chen et al, 2017).
There are a multitude of reasons for why Endo sufferers experience on average a ten year delay in accurate diagnosis of Endo according to Nancy’s Nook, an education and support group founded by an endometrial nurse specialist. Specialists have indicated that the American Congress of Obstetricians and Gynecologists (ACOG) refuse to update their standards of care for Endo. North American gynecologists are rarely trained to recognize the various ways endometrial tissue presents within the entire pelvic area nor have many undergone advanced training in the cornerstone surgical laparoscopic excision which remains the primary advanced treatment for Endo sufferers. Repetitively, gynecologists offer palliative care and repetitive treatments of hormone suppression, typically birth control pills. These, for some, suppress symptoms of Endo but mask the growth of endometrial tissue. Lack of insurance coverage for the more comprehensive excision surgery is another culprit. And, of course, a frank discussion about your period is a topic that girls and women don’t often encounter. Misinformation and myths about what women have to bear or how having a baby or a hysterectomy will eliminate Endo still abound.
IC sufferers often experience long periods of misdiagnosis as well. Because symptoms of IC can mimic other disorders and exclusion criteria must occur before accurate diagnosis is made, IC patients typically receive multiple and unnecessary treatments for many years. This was correlated in several studies to increased levels of depression among IC patients.
Women with Endo or IC require much education and emotional support. Health practitioners, including school and college nurses, therapists, gynecologists, urologists, and general practitioners need to become better educated and informed. Women with these conditions are still, all too often, dismissed or viewed as overly emotional or ‘it’s in their head’.
Progress is occurring, albeit slowly. Just the other day, the Australian Health Minister, Greg Hunt, launched a national action plan for Endometriosis to advance treatment and better educate health professionals. Let’s hope America follows his lead.
This year, my daughter and I are again marching in the Woman’s March—she’ll be carrying a banner that reads: Endo Advocates and Action Group. I’ll carry one that states: Support Women’s Pelvic Health!
Miriam Franco is Professor Emeritus of Sociology, Immaculata University and is a psychologist in private practice in Wayne, PA. She has written on PTSD Among Older Women, Mood Disorders in Multiple Sclerosis and use of Guided Imagery to help alleviate anxiety among caregivers and multiple sclerosis patients.