Endometriosis Awareness Interview

Released: 04/12/2023

In recognition of Endometriosis Awareness Month, Clinical Connections interviewed Mary Lou Ballweg, President/Executive Director (and Founder) of the Endometriosis Association to learn more about the Association and how they support professionals and people with the disease. Endometriosis is a chronic estrogen-dependent immune disease characterized by the development and presence of endometrial-like tissue in anatomical locations and organs outside of the uterus.

CTC-SRH: Ms. Ballweg, tell us a little bit about the history and mission of the Endometriosis Association and reasons why you support their work.

MS. BALLWEG: In 1980, I was a filmmaker and consultant. Suddenly, I was really sick. Bedridden. Ended up on food stamps which was extremely humiliating. I didn’t even know what I had…and was going through what many women still go through…I was told it was normal. It will go away when you have a baby, which is nonsense, or even implications that it is in your head.

I had been involved in women’s health…I had helped start a women’s clinic. So I did my own research and thought I had this thing called endometriosis…so I went to my OB/Gyn and told her what I thought. She said, well we could do surgery, a laparoscopy, and confirm the diagnosis, but even if we do, there isn’t really anything we can do about it. Which was pretty discouraging, but I had to have a definite diagnosis. For insurance, for my family, and my own mental health, etc.

So, once I was diagnosed, I linked up with a friend at the Bread and Roses Women’s Health Center --- it doesn’t exist any more….I told her I needed a support group and so we started one. Women from all over the US, Canada, and eventually all over the world started contacting us about a support group. How do we start one?

I had done a review of the medical literature and there wasn’t very much. I went to NIH and asked them what they were doing….and they said nothing. So, I went back to our group and the group said we will do the research! So, we started the research with a comprehensive ten-page survey. Incredibly naïve and incredibly ambitious and wonderful. For one dollar, we sent a brochure and the survey to people. By a year and a half out, we had more data than anyone had ever collected on endometriosis. We got so much data, we started working with the Medical College of Wisconsin to help us computerize and analyze the data…and this was in the 80’s…so we were working with the huge mainframe computers on their campus. So, analysis of this data set commenced and we started publishing the findings. And eventually, we worked and published with researchers at the NIH. The patterns were pretty incredible….we found first of all that this was not just a pelvic disease; this is an immune system disease…these women and their families have a lot of immune system associated diseases.

CTC-SRH: Can you tell us about the epidemiology and demographics of people who are diagnosed with endometriosis?

MS. BALLWEG: Who has the disease, a much larger group, is a different group than who is diagnosed. This is a difficult question. We really don’t know. We know how many people are diagnosed, but not how many people have the disease. It is still taking up to 10 years on average to get a diagnosis. And those are the people that actually get a diagnosis. If you are poor, do not have insurance, are Black or Hispanic, you might never get a diagnosis. And if you are a teen or pre-teen, forget it! It is really tough. So, more white women tend to get diagnosed. In fact early on, it was categorized as a ‘white career woman’s disease’ – ‘thin, nervous, perfectionist’….it was just nonsense.

The reality is that any female and a few males can get endometriosis. We just don’t know the actual numbers because so many are undiagnosed. Now this is going to change…..hopefully, in the near future because there are several non-invasive tests in development. People have figured out that there is a huge market. So we see endometriosis in girls as young as nine and in post menopausal women and in all ages between. I have talked with women in their seventies who are still dealing with symptoms…..the pain and the up and down cycles…and many have had hysterectomies.

One risk factor is early menarche…it pains me to think of little girls that young not only having their periods, but having excruciating pain with them. Some people will have mild symptoms, some will have severe. It can progress and can remit and relapse…it is like autoimmune diseases…the way it acts, but nobody is willing to label it that yet. Women with endometriosis are at increased risk for seven autoimmune diseases, including Hashimoto’s thyroiditis, rheumatoid arthritis, multiple sclerosis, lupus, hypothyroidism, and fibromyalgia. That is work that I published with the NIH. So, early menarche, inflammatory disorders, even before menarche, such as allergies and asthma and inflammatory gastrointestinal conditions. In the family, you often see that a patient’s mother and grandmother or other family members had endometriosis also…so it was thought that it was genetic. Now we look at epigenetics…environmental exposures which can affect the first generation and as many as five successive generations as shown in work with our team at Vanderbilt. And a number of toxins, which act epigenetically, have been linked to endometriosis.

CTC-SRH: The diagnosis is often delayed….what are the reasons for this and how can providers be more attentive to signs and symptoms of this disease?

MS. BALLWEG: So currently - and this goes nicely with Condom Awareness Month - the only available MPTs are condoms. We know condoms have great benefits, but condoms have not fully addressed the problem. I think there are a lot of challenges with common use and questions about how far condoms have come. There are several MPTs in development right now, and at multiple stages in development.

Complete medical history taking is the key. Be sensitive to the fact that people may not tell you everything. They may not tell you about how painful their periods are, or that they have pain with sex, or bowel and intestinal symptoms, especially related to their menstrual cycles. And the reason, unfortunately, is that they have likely been told previously by other health care providers that this is normal. They have been told that it is part of being female, which is a terrible thing to say, especially to young girls. So the patients downplay it. Clinicians have to probe more. Ask the leading questions. Many health care providers just don’t ask the right questions. Are you unable to work, unable to go to school, do you miss social events because of your period? History is critical. And also the full medical history…asthma, allergies, and any other inflammatory diseases, and bowel issues since we know those are associated with endometriosis.

CTC-SRH: Where can our readers get more evidence-based information about endometriosis, including current treatments, and client education and s https://endometriosis.ca/upport tools?

MS. BALLWEG: Although the title to this article would lead one to believe that it is only about animal research, in fact, it is an overview of endometriosis and covers pain management, infertility, and surgical management. [insert citation] If people are looking for a website, the Johns Hopkins one is pretty good. https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis. It’s really tough, because like other diseases, the science and the research is at least 10 years ahead of clinical availability. Prevention starts way before puberty….we are just beginning to uncover how important it is to pay attention to allergies and asthma. We have a lot of work to do.

CTC-SRH: Thank you for talking with me today… this has been so informative.

MS. BALLWEG: Thank you for taking these messages to your communities.

This interview is intended for informational purposes and does not constitute legal or medical advice or endorsement of a specific product. Opinions expressed herein are the views of the contributors and do not necessarily reflect the official positions of the Department of Health and Human Services (DHHS), Office of the Assistant Secretary of Health (OASH), or the Office of Population Affairs (OPA or the Center for Sexual + Reproductive Health (CTC-SRH). No official support or endorsement by DHHS, OPA, or CTC-SRH is intended or should be inferred.

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Supported by the Department of Health and Human Services / Office of Population Affairs / Office of Family Planning Grant #1 FPTPA006031-01-00.

CTC-SRH is supported by the office of Population Affairs of the U.S. Department of Health and Human Services. The information presented does not necessarily represent the views of OPA, OASH, or DHHS
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