She Has Given the World Three Great Gifts: Mary Lou Ballweg

By Wendy |

Entrant: Solina Marquis

Nominee: Mary Lou Ballweg, President and Executive Director, Endometriosis Association

My Health Hero – and all-around hero – is Mary Lou Ballweg, co-founder, organizer and President and Executive Director for the last 29 years of the Endometriosis Association, an international organization with headquarters in Milwaukee, Wisconsin, but an influence as wide as the world.

Mary Lou has carried the endometriosis torch for almost three decades, bringing this mysterious disease out of the Dark Ages and into the light, out of the closet and up for discussion and investigation, improving the lives of millions of women and their families and our global public health.

I would not be the least surprised if you are asking yourself, “Endometriosis – what’s that?” This disease is one of the most widespread conditions in the world, but one of the least-known and understood. In the late 1970s, Mary Lou didn’t know a thing about endometriosis either. She was a successful young career woman who had recently left the position of managing editor of Investor, Wisconsin’s Business Magazine to launch her own film and communications company.

She was a rising star with tremendous energy and a bright future when she suddenly became seriously ill with endometriosis. After numerous physician consultations, Mary Lou received an endometriosis diagnosis, but instead of being offered a cure, or even some viable treatment options, she was left with more questions than answers. Frustrated by the lack of awareness and the dismissive attitude she frequently encountered among medical professionals, in 1980 Mary Lou founded the Endometriosis Association (EA).

Today, it is conservatively estimated that 89 million girls and women from all racial and socioeconomic groups around the world have endometriosis. Endo, as it is often called, strikes those as young as eight and, contrary to popular belief, it can and often does continue to cause symptoms well past childbearing years. While doctors and health researchers once believed that endometriosis affected only a woman’s reproductive system – and only in “career women” – thanks to Mary Lou’s unflagging focus on the need to educate physicians, patients, and the public, we now know that endo is a challenging, widespread, and puzzling hormonal and immunological disease with proven links to toxins in the environment.

Despite its obscurity, this disease can and does bring dramatic and life-altering consequences to women’s lives, frequently causing debilitating chronic pain and infertility and a lifetime increased risk of allergies, asthma, and eczema, as well as a greater chance of developing autoimmune disorders such as multiple sclerosis, lupus, and rheumatoid arthritis, and many types of cancer, including ovarian tumors.

I am one of those estimated 89 million women, one of at least four in my family who have been diagnosed with endo. But I am one of those “lucky endo patients” who have benefited in so many ways from Mary Lou’s unstinting vision and focus on this puzzling disease that carries the burden of NO easy treatment options; NO cure; diagnosis possible only with laparoscopic surgery – NO quick blood or urine test; major societal taboos (yes, we talked about sex, but not if  it hurt); little awareness and huge misconceptions, even in the healthcare community – no “walks for the cure” and no pink ribbons; and little or no understanding by the adjunct parties who we had to depend on, like the insurance companies who often told (and probably still tell) endometriosis patients, “We’re not going to pay for ‘elective’ hormonal treatments” — how those of us who have suffered through the side effects and expense of complicated and sometimes experimental medical regimes and surgeries wish we could just “say no” to the whole business.

I tell a bit of my personal endo story here not because it’s particularly interesting or extraordinary, but precisely because it is typical of so many women’s story. I hope that understanding just a bit of someone’s story may help others see how far we have come in conquering this mysterious disease, largely because of one woman’s refusal, on behalf of millions of others, to accept the unacceptable.

At age 56, I have “known” endometriosis most of my life, though I didn’t know its name until I was finally diagnosed at age 31, almost 20 years after my first period. Body-wise, my most dominant memories of those two decades are still of periods so long, heavy, unpredictable, and painful that more than once my boss found me white-faced in pain and curled into a ball on the floor of my office; of painful sex and pelvic exams (angry nurse: “Move down on the exam table – this can’t possibly hurt”); and of years of monthly conception disappointment, followed by confidence-stealing “advice” from the medical community and the lay press that I should be able to conceive if I would just relax. Ironically, it was my husband – an engineer with little interest in biology or medicine – who, in 1983, came home one day and said, “I think I know what you have – endometriosis.”

He had heard a radio program on endo, a program which I probably resulted from Mary Lou’s work to raise public awareness. My husband thought that the endo symptoms described on that radio show matched mine perfectly. I had already seen two well-regarded gynecologists for my fertility and menstrual problems, but neither had ever mentioned endo as a possible cause of the painful periods and difficulties conceiving. And so I saw my third gynecological specialist, who agreed with my husband that endo was likely causing my symptoms, but surgery was needed for confirmation.

Not more than a month after surgical diagnosis, my boss told me about a friend who had been recently diagnosed with endometriosis. This woman, Cheryl, had been talking with some women in another state who had organized some sort of support group for women with endo. Just a couple of months later, I was benefitting from a support network in my area and a source of reliable information on a national level. Our local group continued to hear about Mary Lou, a little about her own endo story, but mostly about her efforts to educate and support other women, work that began in the early 70s when she helped found and organize the Margaret Sanger Community Health Clinic in Milwaukee, Wisconsin. This clinic for low-income women broke new ground in healthcare advocacy, a path that Mary Lou follows to this day.

Fast forward to 1998: Despite two term pregnancies and having breastfed both my babies at least a year, some of my endo symptoms had returned. After much indecision, I finally decided in 1998 to have a hysterectomy for a multitude of reasons. The doctor expected a routine short surgery, possibly to be done vaginally, but instead found endo adhesions all over my pelvis, so “routine” turns into long and complicated, followed by a difficult recovery. Hysterectomy did not cure the endo.

Until recently – and again, like many others, I continued to experience painful ovarian cysts (I fully understand the expression “sweating bullets” as that is what these cysts can feel like at their worse), a not-uncommon consequence of endometriosis. And like millions of others, I live with the uneasy knowledge that I have a much greater risk of developing other chronic painful conditions and various deadly cancers. I have seen the these linked consequences firsthand in my own relatives and also in my husband’s sister who had endometriosis and died at age 47 of rare neuro-endocrine tumor.

Back to Mary Lou’s story: One of the initial steps she took in the early 1980s on behalf of the rest of us was the creation of the world’s first database of women with endometriosis. This database laid the foundation for research opportunities and led to partnerships with the Medical College of Wisconsin, Dartmouth Medical College, the National Institutes of Health (NIH), and Vanderbilt University Medical School, where the Endometriosis Association’s program devoted to finding a cure is currently in its ninth year.

Widely recognized as an authority on endometriosis, she has published four books, overseen the production of three educational videos, developed and executed two million-dollar-plus educational awareness campaigns, and researched and written a steady stream of journal articles, chapters for medical texts, and newsletters. Despite having no formal medical training, Mary Lou is featured in the International Who’s Who in Medicine as the person most singularly responsible for calling attention to endometriosis.

Mary Lou Ballweg’s modest demeanor and unassuming presence belie the magnitude of her accomplishments, and few would ever guess that this soft-spoken, compassionate intellectual is the powerhouse behind one of the leading women’s healthcare nonprofits. Because the debilitating and potentially disabling effects of endometriosis are not widely understood, the majority of the Association’s work is supported by those of us who have a personal connection to the disease. One of the local supporters is the Quadracci family, who have contributed a million dollars. While that sounds like big money, the majority of the organization’s funds support medical research, an expensive, long-term undertaking.

For the most part the Endometriosis Association operates on a shoestring budget. The thriftiness of the organization is reflected in the comments of Stella Capek, Professor of Sociology, who says, “I have rarely seen an organization that so effectively makes such extraordinary global contributions by doing so much with so little. No resource ever goes wasted at the EA.” Capek, who is considered an authority on social change movements, also points out that the Endometriosis Association has “an inspiring record of accomplishments far out of proportion to its small base of operations.” It has inspired those of us who look for ways to support women’s healthcare to dig as deeply as we can – we know that not a penny will be wasted and that its spending will fund “the important stuff.”

We all continue to benefit from Mary Lou’s story of empowerment, dedication, compassion, and hard work. She has enabled women like me to lead happier, healthier lives and fulfill dreams that we didn’t believe possible. She has pushed and pulled the research community to make discoveries that have changed the very landscape and horizons of environmental health and that have advanced women’s healthcare on numerous fronts.

Through her personal and professional commitment to the other 89 million, and despite having to live with her own personal and painful “endo story,” Mary Lou Ballweg has given the world three great gifts (1) An understanding of endometriosis, its causes, and its potentially broad, long-lasting, and devastating consequences – not just for the women with endo, but for all of us; (2) An unstinting determination to find the resources and the will to discover and develop both a noninvasive diagnostic technique and a cure for endo; and (3) The realistic hope and possibility that our daughters’ daughters will have to ask, “Endometriosis – what was that?”