Endometriosis By Lisa Glickstein, Ph.D, Triplet Mom Originally printed in May, 2005 In the 1800’s, during the dawn of psychotherapy, “excitability and nerves” in women was often blamed on hysteria, literally “wandering uterus.” Today, it is known that depression, anxiety, or other similar disorders have nothing to do with the uterus! However, it is also now known that parts of the lining of the uterus (the endometrium) can travel far from the uterus and implant in other parts of the body. This tissue is still highly sensitive to a woman’s hormonal cycle, and therefore bleeds when a woman is having a period. This condition is termed endometriosis. Many women may have this condition without experiencing pain or other symptoms, and only be diagnosed due to infertility. For others, pain can be debilitating, leading to family disruption, inability to go to school or work, and depression. How do I know if I have endometriosis? The most common symptom is pain during your period. The pain may be localized in the pelvis or abdomen, the most common sites of endometrial tissue outside of the uterus. In some cases, tissue may be elsewhere, for example a painful site in an arm or leg. The pain may have started during puberty, and gotten worse with age. This is because the tissue tends to grow slowly and spread to other sites over time. Many women with endometriosis have been told to “just deal with it” or know that they have always needed high doses of ibuprofen (Motrin or Advil) to get through their periods. Most troubling, some girls can develop endometriosis before puberty. Alternately, some women with severe endometriosis have no symptoms at all, except for infertility. For these women, the endometriosis may be suspected because of unusual positioning of the ovaries (possibly due to scarring or pelvic adhesions) or blocked tubes during the dye test, and then visualized or biopsied by laparoscopy. For all women, endometriosis can be diagnosed by response to Lupron, but can only be confirmed by biopsy of the tissue. This is important as there are other causes of pelvic or abdominal pain, for example ovarian cysts or even cancer. What causes endometriosis? No one understands why the uterine lining tissue ends up in other sites in the body, but there are several theories. The original thinking was that during the period, some of the uterine tissue might flow backwards, out of the fallopian tubes, and into the abdominal space. This may occur in some cases. However, new findings that girls can have symptoms of endometriosis at their first periods (or earlier) has led some researchers to suspect that the tissue develops incorrectly (due to misfired signals) at sites outside of the uterus during fetal development. There is also recent evidence that endometriosis is linked to autoimmunity in some women. That is, the women’s bodies recognize the lining tissue as foreign material and direct an immune response against it. The inflammation then leads to bleeding, spread of the tissue, and pain. This may be the case in younger girls with endometriosis. Other recent research suggests that some endometrial tissue grows nerves, while other tissue doesn’t. This may be why some women with severe tissue growth have no pain, while others have one or two very painful lesions. Finally, women with endometriosis are more likely to also have menstrual migraine headaches. This is probably due to production of prostaglandins, the hormones responsible for causing the uterus to contract to expel its lining during your period. What is the treatment for endometriosis? Surgery can remove known lesions and is the only method known to do so. It is unfortunately not a cure, as endometriosis frequently comes back. Such surgery is usually performed close to the time of IVF treatment, or in the most severe cases of pain and disability. For some women, ibuprofen is sufficient to control monthly pain. This medication reduces prostaglandin production, as well as controlling inflammation. However, it does not shrink existing lesions or prevent them from spreading. Ovulation suppression with Lupron or birth control pills is an option for young or middle-aged women wanting birth control anyway. They work by blocking hormones and preventing monthly bleeding. The best control is obtained by constant use (for example, Lupron, the patch, Depo-Provera, or skipping sugar pills). This treatment may shrink some lesions by depriving them of hormones, and may reduce spreading as they seem to spread the most during the bleeding portion of the cycle. Lupron is not recommended for long-term use. Surgery is often combined with subsequent hormone treatment to delay recurrence. In the future, new drugs may be found that can block growth and spread of the uterine tissue. One group of such drugs, the Cox-2 inhibitors, was somewhat promising. These drugs, marketed under the trade names Celebrex and Vioxx, block one step in the production of prostaglandins, and are most commonly prescribed for arthritis relief. Unfortunately, they have recently been found to increase the risk of heart attack in susceptible patients. Their use has been greatly reduced while these potentially fatal side effects are investigated. Once understood, the drugs may be brought back on the market. As the uterine tissue in endometriosis resembles a benign tumor, it has been thought that the new cancer drugs that block blood vessel growth into tumors (anti-angiogenic drugs) might be beneficial. In an initial clinical trial, one of the members of this drug family was able to prevent new lesions from forming, but did not get rid of existing misplaced uterine tissue. This treatment is still investigational. Where can I find out more? The average duration of symptoms before an endometriosis diagnosis is measured in years, not months. Primary care physicians, and even specialists like gynecologists, obstetricians, and reproductive physiologists may or may not be informed enough to suspect or diagnose endometriosis. An excellent alternative is to visit a medical center that specializes in treating endometriosis. Doctors in the adult and children’s gynecology departments at Harvard Medical School are affiliated with the Endometriosis Association (http://www.endometriosisassn.org/). Because of the link between endometriosis and infertility, the many fertility clinics and centers in the greater Boston area also have specialists who are familiar with endometriosis.