OBGYN.net: The Universe of Women's Health

You may think that a diagnosis of endometriosis is made by a laparoscopy, when I became involved, I learned that not many people are comfortable doing a laparoscopy even those who are gynecologists and trained in endometriosis, to do perform a laparoscopy on a 8-, 9-, 10-, or 11-year-old. As adult gynecologists, we’re not trained to work with younger people, but when does endometriosis start? We don’t know the answer to that. There are many theories and Mary Lou as well as many others have been promoting different ideas and education around the world but if you believe the research that’s been done, that endometriosis is a progressive disease, you may think that it starts at an younger age. If that’s the case, the question arises; if we make a diagnosis when people are young, is it going to be possible to relieve years of suffering and pain and also decrease rates of infertility and long term complications from endometriosis?

So that’s one of the crusades that we’ve thought about and tried to move forward as we think about ways of improving the quality of life. Until there’s a cure for this disease, we’re going to work on improving quality of life but until that time, I think we can also improve quality of life by making a diagnosis at an earlier age. So if you speak with any of the young women, and you’re going to hear from some of them this afternoon who are quite courageous and who have been through a lot to get to the point of diagnosis, think back to your own adolescence. It’s not always the most pleasurable memories you have of your adult life when going backwards and thinking of your time as an adolescent. Sometimes it’s pleasant, sometimes it can be awkward, and sometimes people are uncomfortable trying to search and understand the changes that are going on in their bodies. Let’s say a young woman has pain. Let’s say a young woman’s in school and she’s feeling pain, who can she tell? Who does she go to?  Often, people are embarrassed, they don’t want to talk about it, and they may get depressed about the situation. What we’ve found  in many cases, is that people do confide in their parents, and hopefully, they have a parent who will listen. We’re grateful that a lot of women who are adult survivors of endometriosis are now empowering their young daughters to come to diagnosis earlier. There are studies that have shown that there is a genetic factor for endometriosis for some cases, and we can make a diagnosis at a younger age to try to help a lot of these young women. But maybe her parents aren’t familiar with the disease, maybe they haven’t been afflicted with the disease themselves, so where does this young woman turn for information? We’ve found that over the years a lot of people will turn to their school nurse but is the school nurse educated about the disease? Or they might turn to their pediatrician, their adolescent medicine health provider, nurse practitioner, some family support person or religious person, or a schoolteacher or a family member they’re close to. But the problem is a lot of those people don’t even know about endometriosis, and what’s more, a lot of people were taught over the years that endometriosis only occurs when women are getting older. I think commonly for many years it was taught that endometriosis occurred in women when they were in their twenties, thirties, and forties.  What do you think is the youngest age of endometriosis that’s been diagnosed in the world? Six - that’s an interesting guess, ten, I think the youngest patients that are reported are eight or nine years old.

We’ve recently discovered some cases of endometriosis in women before they’ve even gone through pubertal development; they haven’t even had their first period yet and they have endometriosis. It’s interesting because we don’t understand why that happens but also on the other hand, think about that eight- or ten-year-old. The kid is very young, it’s hard enough to be going through adolescence and understand what’s going on with their bodies and to also have a problem that might be causing pain. If they go on the Internet and read about it, they might read about infertility problems or hysterectomy, that’s a very scary concept for an adolescent. Now take the other side of this and look at the average age of first sexual activity in the United States. The average age of the first sexual encounter – unfortunately, and many patients might cringe when they hear this and I have a young daughter who, hopefully, won’t be the same situation, but the average is 50% of 15-year-olds are sexually active in the United States. So if this 14- or 15-year-old goes online and reads that one of the "cures" for endometriosis is pregnancy, what do you think is going to happen - and it does happen. Unfortunately, we see a lot of adolescents who, no matter how much education you provide them, are convinced that they’re not going to be able to get pregnant later so they think about having a child when they’re 15-, 16-, or 17-years-old. That’s a scary concept. I’m not sure they’re prepared to be parents at that age. What are we really doing? I don’t think we’re providing the appropriate educational information. So a number of years ago when it was discovered that there was a void of information for adolescents, we tried to find out from the young women - some of whom I told you are here today - as to what they wanted and what they needed.

What we found that was really helpful was setting up support groups for teens; setting up big sister programs with women who’ve been through it so that they can learn what really is available for them. They can learn what the options are for them, what the side effects of some of the medications are because they really do, as has already been pointed out, have side effects associated with them, what types of medical and surgical therapies are available, and really trying to get excellent care for young women. The problem that we’ve always identified is that a lot of these young women aren’t believed. So they go and they complain of pain and they’re told that it’s in your head, they’re told you just really want to be getting out of school - school avoidance and other acting out activities. The problem is that there really is an underlying problem and you can work with the disease in endometriosis and resume normal quality of life. The hope is to improve quality of life so that this young woman isn’t missing out on her adolescent years of socialization, of education, and also of having a good body image and a good self-esteem. She really wants to consider, I would hope, her reproductive organs and her bodily changes as a positive thing and not something to be dreaded and avoided as she possibly might develop endometriosis.