Endometriosis

What is endometrosis?

This disease develops when endometrium, the normal lining tissue of the uterus that provides menstrual flow, spills out through the uterine (Fallopian) tubes during menstruation, and attaches to the organ of the pelvis and abdomen.  Implants of endometriosis may settle on the ovaries, deep in the pelvis near the rectum, or on the uterus, bladder, bowels, appendix, and the walls of the pelvis.

The most common symptoms are progressively more painful periods, pain during sexual intercourse, pain with bowel movements, and sometimes, pain in the lower abdomen and pelvis for many days of the month.The diagnosis of this disease is usually made by the history and physical examination.  We feel, when endometriosis is suspected, it makes sense to treat with the less difficult hormonal (i.e. birth control pills) and pain medications first.

If these treatments are not successful, we feel it is important to then confirm the diagnosis by doing a laparoscopy and treat the disease surgically at the same time.  After surgery, these same hormonal treatments are often continued.  If symptoms persist, we then move on to the more involved hormonal treatments such as continuous progesterone compounds.

What about the currently popular practice of using a GnRH agonist (e.g. Lupron) without doing a laparoscopy first?

This has become common practice since the publication of a study by the drug's manufacturer several years ago.  The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis.  When Lupron was given and the ovaries temporarily shut off, pain improved.  However, pain was also reduced in the women who did not have endometriosis.  This happens because hormones made by the ovaries influence pain perception.  Therefore, when pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand this leads to incorrect diagnosis in at least 25% of cases.  In addition, some forms of endometriosis do not respond to this drug.  Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution.  Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

When the pain from endometriosis doesn’t go away with Lupron, what does that mean?

It usually means one of two things:

  1. There may be components of the pain that are not related directly to the endometriosis, such as muscular pain in the pelvic floor muscles, bladder or bowel related pain, or nerve pain that has developed in the body wall and other muscular structures during the course of the illness; or
  2. There is invasive, nodular endometriosis that doesn’t respond well to hormonal therapy, but is best treated with advanced laparoscopic surgery.When we do a laparoscopy to treat endometriosis, we most often excise (cut out) the areas of disease. 

Many experts around the country feel that this gets better results than cauterizing the tissue with electricity or the laser.  With the proper level of experience, this can be done safely even if the disease is very near vital structures such as blood vessels or the ureters.

What about advanced disease (stage 3 and 4) and disease on the bowels?

Over the past ten years, we have developed significant experience (over 1,000 cases) treating advanced stages of the disease laparoscopically.  We have performed many surgeries with the goal of preserving fertility, and also many involving the definitive surgery of hysterectomy and removal of both ovaries.  Since 1998, we have worked with Dr. John Boggess of our Division of Gynecologic Oncology to develop techniques for removing very advanced endometriosis that has invaded the rectum.  We now have  experience in over 60 cases removing portions of the rectal wall or even entire 5 or 6 inch segments of the rectum, and reconnecting the bowel, all laparoscopically.  The safety of this procedure is equivalent to that of the same surgery done through a large open incision, and the recovery is far easier when it can be done laparoscopically.

Pre-Sacral Neurectomy

In some carefully selected cases, the best pain relief can be obtained by performing a pre-sacral neurectomy, a procedure that cuts some of the nerve fibers that supply the central part of the pelvis (mostly the uterus).  While the procedure is helpful in about 75% of cases, it does have significant risks, and is therefore performed only after thorough counseling about its risks and benefits.For many women with endometriosis, the goal of treatment is to preserve fertility as well as relieve pain.  For this reason, we work closely with members of the Division of Reproductive Endocrinology and Infertility, as necessary, to accomplish both goals.

What about chronic pain with mild endometriosis?

In many cases, endometriosis can be present without any symptoms at all.  So when so endometriosis is found in someone with pain, the physician still needs to make a careful judgement about just how much of the pain is due to the disease.  We see many women referred for pain evaluation who have had extensive treatments for the endometriosis, but with little benefit.  In many instances, rather than escalating the treatment into more involved surgery or more intensive medical therapies, it makes sense to carefully evaluate other potential sources of pain.  For example, we often find that women who have been battling endometriosis for years develop sensitivity in surrounding organs, such as the bladder and bowels, as well as uncomfortable spasms of the pelvic floor muscles.  In these instances, it is important to treat these other problem areas as well as treat the endometriosis.

How much experience has the UNC group had?

We see about 700 new patients each year, about half of whom have had endometriosis.