Delineating the disease: Obtaining accurate information

Many people view endometriosis as a mysterious disease. When you think about it, however, the only reason something is mysterious is because we lack adequate information about it. When sailors crossed the ocean and found the Earth to be round, they solved the mystery of what lay over the horizon. When you open your presents at Christmas, the mystery about what lies inside is solved. Sufficient and correct information resolves any mystery satisfactorily. In fact, the more mysterious something seems, the more likely it is that current information about it is either incomplete or inaccurate. It follows, then, that the mysteries that appear to surround endometriosis are simply due to inaccurate information.

If inaccurate information is the problem, then accurate information is the solution. But what constitutes accurate information? Some scientific elitists contend that only information from medical schools is accurate, for surely that's where medical knowledge should come from. Others contend that only randomized controlled trials supply accurate information; all other types of studies are fatally flawed and should be ignored. With respect to endometriosis, some people feel that only reproductive endocrinologists have the correct view, because they have specialized training, don't they?

The fact is that accurate information has a life of its own. It cannot be consigned to any one group. If each group examining a problem has its own set of accurate information, then the same truths would eventually be reached from many different angles. For example, if one child cuts a bare foot on a piece of glass and another child on the opposite side of the world stubs a bare toe on concrete, their mothers would conclude that there are harmful things on the ground and that their children might do better with foot protection. This accurate conclusion has been universally reached around the world for thousands of years without benefit of scientific publications or the Internet. It was reached through simple observation, accurately recorded by many different observers, leading to a truthful conclusion that applied to everyone everywhere.

...the mysteries that appear to surround endometriosis are simply due to inaccurate information...

With respect to endometriosis, if various scientists or clinicians are interpreting their little slice of accurate information, all should be approaching the same truths. The result would be that consensus would be achieved and progress made. This does not appear to be happening. Why?

Inaccurate information can be a plague in science for many reasons. Sometimes it's simply because people repeat what has been handed down from the past without critically analyzing it in light of modern information. This is certainly true with endometriosis. Think of all the myths about the disease which have been disproved by satisfactory evidence, but which continue to persist because people are unable to overcome the tremendous intellectual inertia from the past.

               Selection bias results in false beleaf.

The following are some myths that continue to have a life of their own:

  1. Endometriosis is an incurable disease.
  2. The ovaries are the most common site of endometriosis.
  3. Endometriosis progressively spreads throughout the pelvis as women get older.
  4. Endometriosis is simply displaced normal endometrium.
  5. Microscopic endometriosis cannot be seen and is a cause of continued pain or infertility.

Despite clear evidence to the contrary, each of these myths persists today.

Inaccurate information can also emerge if observations about a disease process are too minutely focused (a "microscopic" perspective). We know that endometriosis has many different visual manifestations and biochemical behaviors. How can one picture taken by an electron microscope be a true representation of all manifestations of the disease? This would be like going into a jungle and taking one leaf from one plant and proclaiming that this was a true representation of all the plants in that jungle. The scientific term for this inaccuracy is called "selection bias".

...every intellectual and therapeutic process surrounding endometriosis begins with a surgeon identifying the disease...

Selection bias can also occur at the other end of the spectrum (the "macroscopic" end) in endometriosis care. This type of selection bias is familiar to many women. It often occurs in the doctor's office when a patient comes in with pelvic pain. Although endometriosis is the most common cause of pelvic pain, doctors often diagnose less common things such as pelvic inflammatory disease or ruptured cysts. If a patient is lucky enough to get to surgery, selection bias can still occur on the operating table if the surgeon doesn't know what endometriosis looks like (in all its manifestations, not just the "classic" appearances).

If selection bias can occur most severely at the ends of the endometriosis spectrum, where can its effects be minimized? The answer is straightforward: in the middle. The middle of the endometriosis spectrum occurs not in the office, not in the lab, but in surgery. Every intellectual and therapeutic process surrounding endometriosis begins with a surgeon identifying the disease. A surgeon identifies the disease and confirms what was bothering the patient in the office. A surgeon identifies the disease and removes a small portion to send to the lab for minute scientific study. But surgical findings have their own importance, since accurately recording surgical findings can lead to helpful insights about the disease.

The best possible scenario would involve a surgeon who does lots of endometriosis surgery and is familiar with all the possible visual manifestations of the disease. If that surgeon were to accurately record the amount and location of the disease in each patient, a very detailed picture of the disease would emerge. If that new perspective were to approach the truth, then such an emerging picture would necessarily differ from previous understanding of the disease since our traditional beliefs are associated with confusion and confusion is the hallmark of inaccurate information.

The usual way of measuring the occurrence of disease in the pelvis is to use the American Society of Reproductive Medicine's scoring system. Unfortunately, this classification system is heavily weighted toward scar tissue, not endometriosis. It gives no accurate way to measure the extent of disease in the pelvis. Additionally there are over 100,000 different combinations of points that can be scored, far too many to be useful. the search for important medical truths, problems can occur when doctors and researchers don't keep accurate records...

All of this became so clear to me 20 years ago that I developed a new way of measuring the extent of disease surgically. I simply divided the pelvis and intestinal tract into simple anatomic areas and tabulated the sites of occurrence of biopsy-proved endometriosis in each patient on which I operated. By becoming proficient in computer programming, I developed a computerized version of this unique pelvic mapping system. It is now being emulated around the world. This map provides a simple and accurate picture of where endometriosis is in the pelvis. The computer database also keeps track of over 100 different pieces of information on each patient, which is helpful in developing truly accurate insights into the disease.

In the search for important medical truths, problems can occur when doctors and researchers don't keep accurate records, as some well-known surgeons are now learning. Regardless of the setting (academic, clinical, scientific), the combination of careful observation, consistent and detailed data collection, and thoughtful analysis can yield important insights. This approach, accompanied by a willingness to accept new interpretations that can arise from such an inquiry (rather than unquestioningly clinging to past "facts"), can help resolve the mysteries around us, including the "mystery" of endometriosis.