As many as 50 million American women live with one or more neglected chronic pain conditions. For the majority of these women, our health care system offers frustratingly little help. Too many women face neglect, dismissal and discrimination.
The government and private sector have shortchanged research on these conditions, and as a result, they are poorly understood. Health care professionals receive inadequate training on the diagnosis and treatment of these conditions, and effective evidence-based treatments are lacking. In addition, there is growing evidence of a discriminatory pattern in the medical care given to women with chronic pain.
Our campaign is working to change this.
The Campaign to End Chronic Pain in Women aims to improve the quality of women’s lives by raising awareness of chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women suffering from chronic pain.
We are raising awareness among policy makers, health care professionals and the public of the lack of scientific research as well as the poor quality of education health care providers receive on these chronic pain conditions. To that end, our Campaign released a new groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which can be downloaded here.
Our Campaign is led by the Overlapping Conditions Alliance, comprised of volunteer leaders from four non-profit patient advocacy organizations: CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association.
Chronic pain is estimated to affect 25 percent of Americans and account for more than 20 percent of all physician office visits. Unfortunately, women bear the brunt of chronic pain conditions. The six conditions targeted by the Campaign to End Chronic Pain in Women – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular disorders and vulvodynia – either solely affect women, or affect women at least four times more often than men.
The financial toll exacted by these six chronic pain conditions is staggering–as much as $80 billion a year in direct and indirect costs.* In addition, much of this care is unnecessary and wasteful, as women often must visit multiple health professionals before obtaining a diagnosis. Many women receive costly and sometimes harmful treatments that may not be effective or based on quality scientific research.
More information on the diagnosis and treatment of these conditions can be viewed on the Overlapping Conditions website.
Some Facts to Consider
The following independent non-profit advocacy groups comprise the Overlapping Conditions Alliance:
The Endometriosis Association
About the Disease: Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.
About the Association: The Endometriosis Association was the first organization in the world to address the needs of women with endometriosis and to carry out ongoing research. As an independent self-help organization of women with endometriosis, doctors, and others interested in the disease, it is a recognized authority in its field whose goal is to work toward finding a cure for the disease as well as providing education, support, and research. It maintains its headquarters in Milwaukee, Wisconsin. The Association has affiliates, members, Advisors, and funded scientific projects worldwide.
The TMJ Association
About the Disease: Temporomandibular Joint and Muscle Disorders (TMJDs), commonly called TMJ, are a collection of poorly understood 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. People diagnosed with TMJDs may be experiencing other symptoms and medical conditions as part of a broad multi-systems illness that go unrecognized.
About the Association: The TMJ Association, Ltd. (TMJA) is a national non-profit, patient advocacy organization whose mission is to improve the quality of health care and lives of everyone affected by temporomandibular joint and muscle disorders (TMJDs). We invite you to read through our site. We do not give medical advice or referrals, but we can link you to science-based information. We hope you'll join us in changing the face of TMJ™.
The National Vulvodynia Association (NVA)
About the Disease: Vulvodynia, simply put, is chronic vulvar pain without an identifiable cause. The location, constancy and severity of the pain vary among sufferers. Some women experience pain in only one area of the vulva, while others experience pain in multiple areas. The most commonly reported symptom is burning, but women’s descriptions of the pain vary. One woman reported her pain felt like “acid being poured on my skin,” while another described it as “constant knife-like pain.”
About the Association: The National Vulvodynia Association (NVA) is the only international organization serving both women who suffer from vulvodynia and the health care providers who treat the disorder. Created in 1994 by five vulvodynia patients, the NVA strives to improve the quality of life of women with vulvodynia through education, support, advocacy and research.
CFIDS Association of America
About the Disease: Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (ME) and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. On this portion of our website you can find detailed information about CFS, its symptoms, diagnosis, treatment, important research findings and how it affects the lives of those who live with it everyday.
About the Association: The CFIDS Association of America is the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS). Since 1987, the Association has invested more than $28.1 million in initiatives to bring an end to the pain, disability and suffering caused by CFS.
i Harlow BL, Stewart EG. A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia? J Am Womens Assoc. 2003; 58:82-8.
ii Jason, LA, Richman, JA, Rademaker, AW. A community-based study of chronic fatigue syndrome. Archives of Internal Medicine. 1999; 159:2129-37.
iii Reyes M, Nisenbaum R, Hoaglin DC, et al. Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine. 2003; 163:1530-6.
iv Hoffman RG, Kotchen JM, Kotchen TA, et al. Temporomandibular Joint Disorders and Associated Clinical Comorbidities. Submitted for Publication, March 2010.
v Ballweg ML. Impact of endometriosis on women’s health: comparative historical data show that the earlier the onset, the more severe the disease. Best Practice & Research Clinical Obstetrics and Gynecology. 2004; 18 (2): 201-18.
vi Greene R, Stratton P, Cleary S, et al. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. Fertility and Sterility. 2009; 91(1)32-9.
* This upper-level estimate is not an unduplicated total because the incidence of their overlap is still to be determined.
This website was developed for the Campaign to End Chronic Pain in Women with financial support from Pfizer and through the extensive volunteer contributions of member organizations of the Overlapping Conditions Alliance.
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