Taken from the March/April 2011 issue of the Women's Health Activist Newsletter.
While you’re wearing a cast, it’s visible proof that you have an injury. No doctor will tell you the broken leg is “all in your head.” Your coworkers, family, and friends will understand why it takes you an inordinate amount of time to get up and down the stairs. The cast comes off when the bone has healed, and you’re done.
In the case of other, less visible, and more complex physical issues, however, things aren’t so clear-cut. This is especially true of a number of chronic pain conditions that only — or primarily — affect women. These conditions include chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, temporomandibular disorders (TMJ), and vulvodynia. (See box.) Other than the pain conditions involving reproductive tissue and organs, it is unclear why many of these conditions seem to predominately affect women. More research is needed to understand if hormones or the immune system is involved in some way, if women’s pain pathways differ from men’s, or whether women are more susceptible to our modern world’s environmental toxins.
These disorders and diseases are poorly understood, and health care providers receive little training in how to identify and treat them. For many patients, it takes multiple health care provider visits over many months or years before they are diagnosed with these conditions. Along the way, some are misdiagnosed, and may receive inappropriate, ineffective, or even harmful treatments. If her symptoms persist, it’s not unusual for a woman to be told that the problem must be psychological or stress-related. Women who visit emergency rooms too often in excruciating pain are likely to be turned away and labeled as “drug seeking.”
These often-debilitating conditions affect every aspect of sufferers’ lives. Social lives are curtailed and relationships suffer. Women lose their jobs because they miss too much work or become disabled and can no longer work. Worse, losing a job often means losing health insurance. These disorders make life very difficult for millions of sufferers and their families.
What is even more unfair is that these conditions may “overlap”— it is not uncommon for a woman to suffer from more than one condition at the same time. In some cases, individuals suffer from one condition for many years before developing a second or third; in other cases, individuals experience symptoms of several conditions simultaneously. When this happens, the list of symptoms a woman must endure lengthens, and treatment plans become more complex.
In 2008, four organizations — the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the Endometriosis Association, the National Vulvodynia Association, and the TMJ Association — joined forces to found the Overlapping Conditions Alliance, now called the Chronic Pain Research Alliance. In 2010, the Alliance created the “Campaign to End Chronic Pain in Women” to improve the quality of women’s lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as about the neglect, dismissal, and discrimination faced by women suffering from chronic pain. In cooperation with the U.S. Congressional Caucus for Women’s Issues, the Alliance launched the Campaign at a standing-room only event on Capitol Hill. More than 30 House and Senate offices were represented, and the response was enthusiastically positive.
The Campaign to End Chronic Pain in Women’s recommendations focused on increasing interdisciplinary research on chronic pain conditions and the education of both health care professionals and the public using the latest scientific information on the diagnosis, treatment, and prevention of these disorders. The Campaign report that was presented at the launch, makes these points:
- Women are treated less aggressively than men for pain and their reports of pain are often taken less seriously by healthcare professionals than are men’s.
- Health care professionals are more likely to dismiss women’s pain reports as emotional, psychological, or oversensitive and therefore not “real,” leading to women’s more frequent mental health diagnoses.
- These conditions result in a staggering financial burden, estimated at $80 billion a year in direct and indirect health care costs.
- The funds allocated to researching these conditions through the National Institutes of Health are woefully inadequate, at just $1.33 per year for every affected woman.
In the last few months, Alliance members have presented public comment at two Institute of Medicine (IOM) committee meetings, representing the needs of girls and women in pain and urging the adoption of the Campaign recommendations in the Campaign report. At the request of the National Institutes of Health, the IOM has been studying the state of pain research, treatment, education, and recent advances in the field, and will submit a report to NIH this year. Millions of girls and women who are suffering are counting on new policies, expanded research, and the education of healthcare professionals that will bring them relief from their chronic pain. Their lives depend on it.
Diseases and Disorders That Commonly Overlap:
• Chronic Fatigue Syndrome (or chronic fatigue and immune dysfunction syndrome [CFIDS]): a complex, debilitating illness characterized by incapacitating fatigue and post-exertional relapse that persists for days and weeks after even modest physical or mental exertion. Additional symptoms include sleep difficulties, problems with concentration and short-term memory, flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat, and headache.
• Endometriosis: a hormonal and immune disease affecting girls and women. The most common symptoms are pain before and during periods, pain during or after sexual activity, fatigue, infertility, and heavy bleeding. Other symptoms that may occur with periods include painful bowel movements, lower back pain, and diarrhea and/or constipation or other intestinal upsets.
• Fibromyalgia: characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, and extreme fatigue. The level of pain varies and can be intense, disabling whole-body pain. Other symptoms may include headaches, painful menstrual periods, tingling or numbness in hands and feet, and problems with thinking and memory.
• Interstitial Cystitis/Painful Bladder Syndrome: a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region. Symptoms can include an urgent or frequent need to urinate, and pain with intercourse that may worsen during menstrual periods.
• Irritable bowel syndrome (IBS): a common complex motor and sensory disorder in which abdominal pain or discomfort is associated with defecation or a change in bowel habit. Symptoms can include cramping, abdominal pain, bloating, gas, diarrhea, and constipation, and may worsen during menstrual periods.
• Temporomandibular Disorder (TMJ): a complex and poorly understood set of conditions characterized by pain in the jaw and surrounding tissues and limitations in jaw movements. Injury and conditions that routinely affect other joints in the body, such as arthritis, also affect the temporomandibular joint. One or both joints may be affected, which can affect a person’s ability to speak, eat, chew, swallow, make facial expressions, and even breathe.
• Vulvodynia: chronic vulvar pain without an identifiable cause. The vulva is the external part of the female genitalia. The most commonly reported symptom is burning, but descriptions of the pain vary, including “constant knife-like pain.” Pain can occur during or after the application of pressure such as with sexual intercourse, tampon insertion, or prolonged sitting. It can also occur without pressure and can be relatively constant.
Carol Ratliff Drury is Education Program Coordinator and Associate Director of the Endometriosis Association.
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