Endometriosis has no borders: The role of the Endometriosis Association in Africa and Worldwide

Endometriosis has no borders: The role of the Endometriosis Association in Africa and Worldwide Mary Lou Ballweg, President and Executive Director, Endometriosis Association "All physicians I have met are not willing to set up an association on the grounds that endometriosis is not a killing disease like cervical or breast cancer." Souad, Algeria...A disease which has never been addressed...endometriosis is something new. We do not have laparoscopy or hysteroscopy used in its investigation...when medical personnel in Uganda identify enlarged uteruses, and persistent pains in the abdomen, it is usually associated to presence of fibroids." Rita N. Sembuya, Chairperson Joyce Fertility Support Centre, Uganda "...I was diagnosed of Endo 2 years ago but up to now it's still eating me up. My tummy is big as if I'm pregnant. I went through surgery then after I was put on Danazol but nothing seems to work. I have tried to forget about it, but every time I look at my tummy I feel terrible...all I'm looking for is help to cure this disease 'cause it is eating up my ovaries..." Jackie, Uganda "I was diagnosed with endometriosis on my uterus, ovaries and bladder...i went to numerous gynecologists...the option given to me was quarterly hormone injections preventing menstruation..." Nikki, South Africa "Nothing could have prepared me for the excruciating pain that left me curled up on my bathroom floor in agony. Diagnosed with grade four endometriosis, my gynecologist presented me with one bleak solution - a complete hysterectomy. At age 32 it was an option I could not consider." Claudia, South Africa The above are excerpts from letters of women in Africa who suffer from endometriosis today. Perhaps surprisingly, their descriptions are no different from those of women and girls with endo from other continents, despite unique demographic health differences. Across culture, age and race, this disease makes no distinction in negatively impacting the quality of millions of female lives. However, the different perspectives and insights other cultures have and will develop are key to bringing a total understanding of endo's implications. 1 For this very reason, the Endometriosis Association is keen to learn about the methods of diagnosis, treatment and support offered to women and girls with endometriosis on the African continent, and in exchange offer the wealth of its membership's experiences, research and strategies gained over its 23 years in existence. The Endometriosis Association, founded in 1980, is a non-profit international organization of women with endometriosis, doctors and scientists, with support groups and members in 43 countries. Its work focuses on exchanging and providing information about endometriosis, offering mutual support to those affected by the disease, educating the public and medical communities, and promoting research related to endometriosis. Information comes from the Association's ongoing work with tens of thousands of women and girls as well as its research registries (largest in the world) and its extensive research program, including its flagship scientific team at the Vanderbilt University School of Medicine. Thus, the Association's work melds the actual experiences of those with the disease with the best of science. From the patient's perspective, "endo can be a nightmare of misinformation, myths, taboos, lack of diagnosis and problematic hit-and-miss treatments overlaid on a painful, chronic, stubborn disease." 2 This chronic disease silently strikes both the physical and emotional lives of its sufferers, sometimes disabling them sexually, at the work place, as 17 February 2003 1

homemakers, and in life quality. Past assumptions saw endometriosis as a disease affecting only well-educated, white women and that very young women did not get it we know differently today. Many myths (see table 1) about endometriosis are being dispelled as our knowledge grows. Table 1: Myths about Endometriosis Psychosomatic Due to stress Caused by delayed childbearing Career woman's disease White woman's disease Disease primarily of women in their 30s and 40s High-strung, thin, nervous perfectionist women Well-educated women Pregnancy cures it Eighty-nine million women worldwide are conservatively estimated to suffer from endometriosis today. While pain is now widely recognized as a key symptom, other symptoms, especially fatigue, gastrointestinal problems, abdominal bloating and a range of allergic diseases, are still not widely recognized as part of endo (see figure 1). Figure 1: Symptomatology High rates of atopic diseases in those with endo and their families are also seen, including food intolerances, asthma, eczema and debilitating sensitivities to environmental chemicals such as perfumes, cigarette smoke, cleaning agents, etc. 3,4 and a tendency to infections and mononucleosis; 4,5 problems with Candida albicans; 4,6,7 mitral valve prolapse; 8,9 and a greater risk for autoimmune disorders, including lupus, 10 fibromyalgia, chronic fatigue immune dysfunction syndrome, and Hashimoto's thyroiditis; 11,12 as well as some cancers, including ovarian, breast and melanoma (see figures 2, 3, and 4). 2

Figure 3: Prevalence estimates for comorbid diseases 12 compared to the US general female population Table 4: Prevalence estimates for comorbid diseases compared to the U.S. general female population. Autoimmune inflammatory diseases % of study sample (n = 3680) (N) Prevalence among women with endometriosis (per 100,000) Prevalence among general U.S. female population (per 100,000) p value Systemic lupus erythematosus 0.8 (31) 842.4 41.0 a < 0.0001 Multiple sclerosis 0.5 (19) 516.3 73.0 a < 0.0001 Rheumatoid arthritis 1.8 (68) 1847.8 1247.6 a 0.001 Sjögren s syndrome 0.6 (23) 625.0 26.3 a < 0.0001 Endocrine diseases Diabetes mellitus 1.5 (56) 1521.7 1350.0 b.156 Hypothyroidism 9.6 (354) 9620.0 1459.3 a < 0.0001 Hyperthyroidism 1.7 (63) 1712.0 1973.5 a.280 Chronic pain and fatigue states Fibromyalgia 5.9 (217) 5896.7 3400.0 c < 0.0001 Chronic fatigue syndrome 4.6 (170) 4619.6 25.6 d < 0.0001 Figure 4: Cancer in women with endo and their families 13 EA Study: Cancer in women with endo and their families 3

Figure 5: Time to diagnosis of endometriosis A 1998 North American Member Survey (n=4000) of the Endometriosis Association 14 showed the overall delay between onset of symptoms and actual diagnosis to be 9.28 years (see figure 5). Time lapses were also seen in surveys done in Great Britain and Australia. Part of the delay in the North American Member Survey was that the girl/woman took 4.67 years, on average, to report her symptoms to a doctor. Part of it was that the doctors, on average, took 4.61 years to diagnose the disease. Those women in the survey who had taken a long time to be diagnosed were more likely to end up with a hysterectomy. The following figures from the North American Member Survey present the results of medical (see figure 6), surgical (see figure 7) and alternative treatments (see figure 8). While medical treatments helped at most 56-57% of the women, laparoscopic surgery for removal of endometriosis was at least partly helpful for 66%. Hysterectomy was successful in only 41%. Alternative approaches to treatment met with the most success, especially immunotherapy treatment at 65% (immunotherapy is a treatment utilized by environmental medical specialists combining allergy testing including hormonal sensitivities and desensitization, anti-fungal medications and thyroid-ovarian-adrenal balancing). 16 Given the less-than-stellar treatment picture, we believe treatments need to be individualized and that the patient's preferences should be given strong weight, especially in view of the many highly personal issues involving sexuality, gender identity, relationship and fertility (see table 2), and that a full range of treatment options should be presented for consideration. Table 2: Emotional issues associated with endometriosi s Fertility Sexuality Ability to work Ability to care for a household Ability to maintain personal relationships Ability to enjoy life 4

Why support groups for women with endometriosis are key to their coping? These groups form the oasis in which women and girls with the disease can be heard, share experiences and work together to find alternative approaches to conquering their disease. What the support group does for them is best expressed in the following table. Table 3: What support groups do for women with endo 1. Ends their feeling of being alone. 2. Brings the women and the disease out of the closet. 3. Rebuilds lost self-esteem. 4. Teaches coping skills related to the disease. 5. Helps women come to grips with the denial process related to the disease. 6. Debunks the myths of endometriosis. 7. Helps women find a good doctor. 8. Helps empower the women vis-à-vis medical professionals needed to cope with the disease. 9. Helps with difficult treatment decisions, times of crises, etc. 10. Improves the quality of treatment women with endometriosis are receiving. 11. Improves the climate of support for women with the disease. 12. Increases frequency of diagnosis. 13. Benefits our sisters, daughters and other female relatives by having a group or chapter in the community. In Denmark, the support group of women with endometriosis works with doctors and nurses at the largest university hospital to ensure that newly diagnosed patients are linked to their support group members. The Japan Endometriosis Association has support groups spread throughout the country; prior to this Association's existence, women were dependent on whether the physician took time to explain the disease and often told that after pregnancy or hormonal treatment, endo would disappear. The Endometriosis Association in Australia claims that many women suffering from the disease had difficulty finding doctors who were knowledgeable in the vast range of its related symptoms or who could treat the condition. While many doctors simply did not have the time to listen to the woman's concerns, answer her questions and show empathy to her physical and emotional turmoil, the Association's support groups do. 1 What is the role of the Endometriosis Association research? Breakthroughs in women's health are possible if one listens to women with the health problems. The Association's support groups and individual members act as a key knowledge base from which the Association is able to document and tie their experiences together with the findings of the medical and scientific community. The Association remains involved with established international networks of medical professionals and scientists to make sure 5

that the experience-based information of the patient is heard amidst the exchange of information and know-how. Research continues to break new ground about the disease, including its linkage to the environment. In the early 1990s, the Association's research found that 79% of a group of monkeys developed endometriosis after exposure to the chemical dioxin in their food. 15 Dioxin is a toxic byproduct of industrial and consumer processes that involve chlorine or burning of chlorine-containing substances with organic matter at very high temperatures. It builds up in humans and animals (bioaccumulation), concentrating up the food chain (biomagnification) so that the primary source of dioxin exposure in humans is food, especially, meat, dairy products and fish. In 1994, the U.S. agency stated that the "general population's current body burdens and exposures of dioxin are already at levels which affect our health"..."a higher probability of experiencing endometriosis and the reduced ability to withstand an immunological challenge." Additional resources prepared by the Association and others have now begun to elucidate the molecular mechanisms by which dioxin interferes with estrogen, progesterone and the immune system. 17,18,19 What is the role of the Endometriosis Association internationally? Endometriosis has no borders, and the Association can therefore not afford to confine its work. A bigger picture of the disease is unfolding today in Africa and worldwide as well as in terms of the scope of the disease. The Association's work in dealing with issues and problems of women with endometriosis has led to a 23-year-old body of knowledge and experience, which, if shared internationally, will save much time for women and girls with endo as well as doctors and researchers. The Association can help bypass attitudes that discard the disease as unserious by offering literature that is based on research and facts that are hard to counteract and can thus support women to get a foothold in a country. It can help to establish a support network that is able to function throughout a country when this proves otherwise difficult, especially in countries where patient organizations are few. The Endometriosis Association's role in international collaboration with scientific and medical experts in conquering endometriosis is an important and necessary step today to ensure that the concerns of women and girls with this disease are always included in decisionmaking processes about their future. References 1 M.L. Ballweg, L. Hummelshoej, C. Grotberg. "Why the Endometriosis Association Must Be International - Worldwide, endometriosis knows no boundaries." Paper prepared by the Endometriosis Association, Milwaukee, 1998. 2 M.L. Ballweg. The Endometriosis Sourcebook. Contemporary Books, Chicago, 1995. 3 T.R. Nichols, K. Lamb, J.A. Arkins. "The Association of Atopic Diseases With Endometriosis," Annals of Allergy 59, no. 11, November 1987. 4 K. Lamb, T.R. Nichols. "Endometriosis: A comparison of Associated Disease Histories," American Journal of Preventive Medicine, 2, no.6, 1986. 5 Data from Endometriosis Association Research Registry, partially published in Endometriosis Association Newsletter 10, no.2, 1989. 6 M.L. Ballweg. "The Endometriosis-Candidiasis Link." Overcoming Endometriosis: Help from the Endometriosis Association. 198-219. Congdon & Weed, Inc., New York, 1987. 6

7 "Research News: Candida - Chronic Fatigue Link," Endometriosis Association Newsletter 10, no.4, 1989. 8 M.L. Ballweg. "A Heart Defect in Endometriosis: Another Clue to a Bigger Picture?" Overcoming Endometriosis: Help from the Endometriosis Association. 228-231. Congdon & Weed, Inc., New York, 1987. 9 N. Fletcher. "Mitral Valve Prolapse." Endometriosis Association Newsletter 13, no.2, 1992. 10 D.A. Grimes, S.A. LeBolt, K.R.T. Grimes, P.A. Wingo. "Two-Fold Risk of Endometriosis in Hospitalized Patients with Lupus." American Journal of Obstetrics and Gynecology 153, no. 179, 1985. 11 M.G. Brush. "Increased Incidence of Thyroid Autoimmune Problems in Women with Endometriosis." Endometriosis: A Collection of papers written by GPs, Researchers, Specialists and Sufferers About Endometriosis. Compiled by the Coventry Branch of the Endometriosis Society, Coventry, March 1987. 12 N. Sinaii, S.D. Cleary, M.L. Balleg, L.K. Nieman, P. Stratton. "High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis." Human Reproduction, Vol.17, no.10, pp.2715-2724, 2002. 13 L. Duczman, M.L. Ballweg. "Endometriosis and Cancer: What is the Connection." Paper prepared by the Endometriosis Association, Milwaukee, 1999. 14 1998 North American Member Survey (n=4000) of the Endometriosis Association, presented at the VI World Congress on Endometriosis, Quebec City, June 30 - July 4, 1998. Endometriosis Association Newsletter 19, nos.1,2, 1998. 15 Rier, S.E. et al. "Endometriosis in Rehesus Monkeys (Macaca Mulatta). Following Chronic Exposure to 2,3,7,8-tetrachlorodibenzo-p-dioxin." Fundamental and Applied Toxicology, Vol. 21, pp. 433-441. 16 M.L. Ballweg. "lmmunotherapy for Endometriosis: The Science Behind a Promising New Treatment" in Diamond, Endometrium and Endometriosis. Ch. 45, pp. 367-375, Blackwell Science Inc., 1997. 17 S.E. Bulun, K.M. Zeitoun, G. Kilic. "Expression of dioxin-related transactivating factors and target genes in human eutopic endometrial and endometriotic tissues." Paper presented at the 181 Annual meeting of the American Gynecological and Obstetrical Society, Carlsbad, CA, September 16-18 1999. Division of Reproductive Endocrinology, Department of Obstetrics and Gynecology, University of Illinois at Chicago, 1999. 18 S.E. Rier, W.E. Turner, D.C. Martin, et al. "Serum Levels of TCDD and Dioxin-like Chemicals in Rhesus Monkeys Chronically Exposed to Dioxin: Correlation of Increased Serum PCB Levels with Endometriosis," Toxicological Sciences Vol. 59, No. 1 (2001) pp. 147-159. 19 Bruner-Tran K.L, Rier S.E. Eisenberg E, Osteen K.G. "The Potential Role of Environmental Toxins in the Pathophysiology of Endometriosis." Obstetric Gynecologic Investigation, 1999, issue 48, pp. 45-46. 7