Endometriosis Association

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Dr. Mark Perloe: “I’m Mark Perloe, and I’m here with Mary Lou Ballweg who is President of the Endometriosis Association worldwide, and we are at the Endometriosis 2000 Meeting in London, England. Today was a patient focus seminar and two years ago, Mary Lou, we had a similar seminar in Quebec. At the end of the seminar each of the groups reported ideas and strategies for improving care in endometriosis. It seemed like the announcements, resolutions, and conclusions were pretty much the same as two years ago. Have we made any progress?”

Mary Lou Ballweg: “I think we’ve made progress. I think what’s happening and what I saw today at the patient’s symposium is that different entities worldwide are struggling to find a way to come together. We had the sessions in Quebec City two years ago and they were very, very good, and we had them again today. In both cases, we did not have the main attendants at this meeting involved, and we talked again today about having these sessions be part of the main sessions, which is going to be tricky to get. We’ll try for that in 2001, which is in San Diego, I think in February of 2001 because we really need the physicians and the scientists to be part of this in a bigger way. It was labeled the patient’s symposium, and we all know if it’s labeled the patient’s symposium that the majority of physicians and researchers are not going to come. In my group we had representatives of industry; we had three doctors and a variety of patients and the give and take was phenomenal. It was extremely interesting, you could see what the issues are worldwide right there around the table, and I talked to other people who had at their tables only patients, for instance, and it wasn’t the same kind of exchange. So I think next time if we can get this as part of the Congress, don’t label it a patient’s symposium - label it for everybody. Maybe that will get us to the next step where we really can push this agenda forward.”

Dr. Mark Perloe: “In a way this sort of interaction and functioning together as a team, in talking to the people who would invest the time and energy to come to this meeting, may be preaching to the choir. One of the problems that research from EA has shown is that a good part of the problem is that so many physicians that patients see right off the bat don’t understand that these symptoms are related to endometriosis. Tell us something about what the Endometriosis Association is up to now.”

Mary Lou Ballweg: “One of the things that we’re up to is expanding our research program. A lot of people know that we have research going on in a variety of areas including a major program at Vanderbilt University School of Medicine. At Vanderbilt, we’re focusing on basic science and we now have a research fund that will focus on clinical research, and we hope in particular to look at the problem of teens with endometriosis. In terms of medical and surgical treatment, should teenagers with endometriosis be treated differently? Of course, there are the psychosocial issues which are obviously different for a teenager than an older woman. There is no consensus at this point and, in fact, part of the argument in my group today was exactly how do you treat teenagers with this? So we’re inviting researchers anywhere in the world, they’re all eligible to submit proposals by July 1st to us at the Endometriosis Association, and we will evaluate those and fund them by September 1st. We don’t have huge amounts of money so don’t come asking for $100,000 because we won’t be able to help you. Please contact us for some of the parameters and they can reach us at our website – www.endometriosisassn.org or if they want to call us in the States the number is 414-355-2200.”

Dr. Mark Perloe: “I also understand and look forward to attending a major anniversary celebration. Tell us what you have planned to celebrate the groups being around a while.”

Mary Lou Ballweg: “The Endometriosis Association started twenty years ago in January of 1980. We’re now active in sixty-six countries around the world, and we’re going to celebrate that and look to the future at our twentieth anniversary conference on Saturday, October 21st in Milwaukee. It will be a great session, we’re doing only new things so I invite people to attend, there’ll be physicians, researchers, as well as many patients.”

Dr. Mark Perloe: “So if patients or physicians want to learn what’s new about endometriosis, here’s a chance to hear lectures and symposiums but also interact with professionals and scientists.”

Mary Lou Ballweg: “The lectures are not only on some of the more traditional treatments but also looking at some of the related health problems that we’ve documented in women with endometriosis - fibromyalgia, the chemical sensitivities, and GI tract abnormalities. We have experts from somewhat outside of our field but we’ve been working to move them into our field who will be speaking there, people that they have not heard from before so I’m excited.”

Dr. Mark Perloe: “In some of the European countries and around the world we’ve heard about centers for excellence. That’s been a bit slow in starting in the United States so people have to construct their own centers for excellence, and it sounds like your group is going to give people the tools they need to help put that together for themselves.”

Mary Lou Ballweg: “We’re going to try.”

Dr. Mark Perloe: “Thank you so much for coming today.”

Mary Lou Ballweg: “Thank you, Mark.”