Mary Lou Ballweg & Marc R. Laufer, MD
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Marc R. Laufer, MD: Good day. It is an honour to be here today with Mary Lou Ballweg, who is the President and Executive Director of the Endometriosis Association. My name is Marc Laufer and I am the Chief of Gynaecology at Children’s Hospital in Boston and a reproductive endocrinologist at Brigham and Women’s Hospital at Harvard Medical School.
Today, Mary Lou and I are going to be chatting about teens with endometriosis, which I am thrilled that we are able to discuss, especially in light of your new book that has recently come out that focuses so heavily on teens with endometriosis.
Can you tell me a little bit about the book and where things stand?
Mary Lou Ballweg: I love to talk about teens and endometriosis because right from the beginning of the Association in 1980, all of us women with endometriosis were talking about how we had suffered as girls and no one would help us so now, following this train of research that we have done and that you have been involved in, finally we are at a place, because of people like you, where we are paying attention to teenagers with endometriosis.
So in the new book, we have a section for the parents and the doctors about teens with endometriosis and we have a section specifically for the girls themselves, much of it written by teens for other teens, which they really, really appreciate. In conjunction with this, which has just come out and is in all the book stores now, Endometriosis: A Complete Reference for Taking Charge of Your Health [link to: /display.asp?page=endometriosis_complete-reference] Marc and I have co-edited a special edition of the Journal of Paediatric and Adolescent Gynecology all devoted to teens and endometriosis. This was really a first.
Marc R. Laufer, MD: It is a wonderful collaborative effort, and we put this together to try and make a state-of-the-art forum about the treatment of endometriosis in adolescents. One of the most fascinating things I noticed when we put this together was your article on the big picture of endometriosis, and some of the data, which is quite enlightening. It is no big news for you or for people who take care of teens, but I think it is very effective data when you look at the number of women, who you surveyed, and their onset of symptoms. Do you want to talk about that a little bit?
Mary Lou Ballweg: One of the things we noticed in the early 80s was that onset of symptoms to actual diagnosis of endometriosis was 12 to 15 years. That was the early to mid-80s. So when we went back and did another major survey in 1998, we were hoping that that would have improved and it did improve; now it is only 9 or 10 years. So it is really not a very good representation of modern medicine that someone is having symptoms and not getting diagnosed until ten years later.
Part of the gains were lost, I think, because the age of onset is getting younger and younger, as you so well know because you are diagnosing kids now even before their first period.
Marc R. Laufer, MD: Yes, that is a good point. We have had a series of young girls, the youngest being aged 8, who have had the onset of symptoms with a negative work-up, either by their paediatricians or gastro-enterologists, and you could ask why were they brought in? Because their mothers suffered with endometriosis, or their aunts or someone else had endometriosis and suffered at a young age, so the family was more in key with the possible diagnosis than most of their healthcare providers.
So the mothers brought in their daughters at a young age and, by laparoscopy, they were found to have endometriosis. That is unusual, but the pre-menarcheal endometriosis has been thus identified. We do find it commonly in adolescents, as you know, and that part also is why more young women are now being brought forward. Again, going back to your data in that article, looking at the onset of symptoms I was fascinated, and you might want to comment on the onset of symptoms, where most women out of the 4,000 surveyed showed that their symptoms began in adolescence.
Mary Lou Ballweg: Exactly. Endometriosis is really in many ways an adolescent’s disease, even pre-adolescent, and then, unfortunately, continues through the 20s and 30s. What we are seeing in these girls, based on our data, is a whole range of symptoms that actually are more severe and more disabling, as the data shows, than in the older women.
What we are doing to a large degree across medicine is ignoring those patients who are actually suffering the most, probably because adolescent medicine is a pretty neglected field. There are not very many people – paediatricians do not want to deal with this and most gynaecologists really do not like to deal with teenagers too much, either, so we have a small group of wonderful people like Dr Laufer, who really do deal with these girls and we would like to get a lot more people interested in it because it is so rewarding. I think of the story of Dr Kay Lie who is a wonderful surgeon up in Toronto. He did the third surgery on a 13-year-old for endometriosis. She wrote in her child-like printing, “Thank you, Dr Lie, for doing my surgery, now I can ride my bike again.” It is very rewarding when you get a letter like that.
Marc R. Laufer, MD: It is sad that more young women are suffering and that the diagnosis is not being made more often. You mentioned going to a gynaecologist who acknowledged that adolescents can have endometriosis and that was one of the other reasons we put this journal together. I think it is important to know that there is a gynaecologist who is taking care of a young adolescent, that they realise and acknowledge the figure that we put in this journal from Fertility and Sterility from 1997 showing the different colours and classifications of endometriosis, which is the first time this was acknowledged in the classification system from ASRM, as you know, and, as opposed to just calling it atypical endometriosis, and those, as you point out, are the lesions that are most common in adolescents and also have been shown by other people’s studies to be the more painful lesions and those are the more common in adolescents.
Mary Lou Ballweg: Exactly. In the Journal of Paediatric and Adolescent Gynecology you have done a nice grid of a step-by-step matrix, a decision tree, that I think should help people if they are a little bit skittish in terms of getting started with the teenagers or even pre-teens. I think you have given them a lot of guidance.
Marc R. Laufer, MD: I think both of our passions are with improving pain for young women but also the idea that if we diagnose endometriosis when people are young, we know it is a progressive disease, we can hopefully keep it from growing and not decrease fertility issues as women are getting older and trying to have children.
Mary Lou Ballweg: I always say, if we would diagnose and treat well at 15, maybe they would not be infertile at 25.
Marc R. Laufer, MD: And that would be an excellent, excellent situation that we are all hoping for. Soon we will have follow-up data, hopefully, and be able to look at some long-term outcomes and decreasing progression of disease.
Mary Lou Ballweg: I would like to tell people where they can get these things. Our new book, of course, is in book stores. You can also get it from the Endometriosis Association. The Journal of Paediatric and Adolescent Gynecology is available also from us and perhaps from you, also?
Marc R. Laufer, MD: Yes.
Mary Lou Ballweg: So they can contact the Endometriosis Association [link to: http://www.endometriosisassn.org] and we would be happy to get them a free copy of this Journal.
Marc R. Laufer, MD: In addition, it is available from the
North American Society for Paediatric and Adolescent Gynecology, which is the organisation that supports the Journal of Paediatric and Adolescent Gynecology.
Mary Lou Ballweg: Wonderful. Well, thank you, Marc, for all you're doing for kids with endometriosis.
Marc R. Laufer, MD: And thank you for all your doings for all the women in the world, who are suffering with endometriosis. Hopefully, we will be able to solve this.
Mary Lou Ballweg: I hope so.
Marc R. Laufer, MD: Within our lifetimes.
Mary Lou Ballweg: Yes, even sooner maybe.
Marc R. Laufer, MD: That would be great.
Protocol for Evaluation and Treatment of Adolescent Pelvic Pain/Endometriosis