My 13-year-old daughter has been diagnosed with Stage 2 endometriosis. The cul-de-sac in her pelvic cavity is covered with multifocal endo. She has received five Lupron shots (3.75mg) in the past five months, but her symptoms have only worsened. She requires Tylenol #3s to cope with the pain. She cannot attend school. The Lupron has increased her appetite, and she is gaining weight. She also suffers from insomnia. Is there anything else besides Lupron that could help her? She's missing out on so much at school, with friends, with life. Is a second opinion in order? I also worry that her twin sister will develop this, too; is that likely?

K.L.

Endometriosis is best treated by a combination of surgery to excise (remove) the diseased areas and medical suppression to reduce their development. I am wondering what sort of surgical treatment your daughter may have had already. Not all surgeons are specialists in the various methods of removing endometriosis. Many physicians choose to use a laser to remove "all visible endometriosis," but this approach does not take into account that endometriosis may grow deeply into the cul-de-sac (the space between the vagina and rectum), where a laser cannot reach. That means that use of laser vaporization will often fail to completely excise the diseased areas. Such a situation requires excisional surgery to actually cut the disease out. Physicians unskilled in excisional surgery may leave diseased areas in the cul-de-sac and prescribe Lupron to cover up for their inexperience in aggressive management of endometriosis.

Many attempts have been made to come up with staging schema that hope to predict a person's response to treatment, either in pain or fertility. Unfortunately, there is little correlation between the stage of disease and the degree of pain or fertility problems. For some women, stage I endometriosis can be far more incapacitating than stage IV in other women. So, do not judge your daughter's situation based on the stage of disease.

Endometriosis may, in fact, be three or four different diseases. We know that the response to medical treatment varies in different areas of the body. For example, endometriosis on the peritoneal surface lining the abdomen responds quite well to GnRH-agonist (Lupron) suppression of estrogen levels. In contrast, disease in the cul-de-sac does not respond as well to hormonal suppression.

Many of the complaints you note may be related to the low estrogen levels associated with Lupron therapy. We have found that our Lupron patients do much better when we combine Lupron with a low dose of estrogen and progesterone "add-back therapy" right from the start. This avoids the hot flashes, sleep problems, memory complaints, and many problems with muscles, bones and joints.

It would appear that the next step for your daughter would be consultation with a specialist and review of the surgical report and operative videos or photographs to plan a more aggressive excisional surgery. Successful application of the latest excisional surgery techniques in combination with postoperative hormonal suppression may well give your daughter back a normal life.