The role of record reviews in the diagnosis and treatment of endometriosis

When a patient is interested in coming to Bend for surgery, the entire process begins with a review of her medical records. If you have ever wondered about the thought processes involved, here's your chance to see the review through my eyes.

Endometriosis is supposed to be an enigmatic disease that has baffled doctors for decades. How, then, could a physician feel comfortable giving advice about such a mysterious illness by letter to a patient hundreds or thousands of miles away whom he's never seen? Well, sometimes it isn't easy. I really do all the record reviews personally, and I take the records home to complete them at night or on weekends. I try to reserve some private time for occasional fun, but I feel that I have a responsibility to the patients who are seeking my help, sometimes after over 10 previous surgeries and several rounds of medical therapy.

It is possible to do a successful record review for most patients because (contrary to conventional wisdom) endometriosis is a rather predictable disease. I can say that now, after having operated on thousands of patients with the disease. There are many thoughts going through my mind during a record review, and I'll discuss them now in no particular order.

The older a patient is, the more likely she will have acquired some other problem besides endometriosis. For example, fibroid tumors and adenomyosis of the uterus are more common as women get older, so patients beyond 35 may have something causing pain instead of, or in addition to endometriosis. Conservative surgery for endometriosis will not treat pain caused by other developing uterine conditions.

Nonspecific symptoms
If a patient has difficulty describing her symptoms or where they occur or when they occur, then endometriosis may not even be present; or if it is, it may not be causing her symptoms. Such a patient may not have a good prognosis for pain relief following surgery.

Specific symptoms
Endometriosis occurs most commonly in the cul-de-sac and immediately surrounding tissues. Anything that impacts on the disease in this area will cause pain, including deep penetration with intercourse, pelvic exams, and bowel movements.

If a patient describes pain with bowel movements all month long, she may have obliteration of the cul-de-sac (the rectum is stuck to the back of the cervix, indicating invasive endometriosis in the entire area). If she describes painful bowel movements only with the menstrual flow, she may have endometriosis only of the cul-de-sac or uterosacral ligaments.

Menstrual pain that is described as centrally placed in the pelvis with radiation into the anterior thighs, low back and up to the umbilicus is frequently coming from the uterus. Surgical removal of endometriosis may not relieve this type of pain.

Age at Onset of Symptoms: Most patients with endometriosis begin to hurt in their teenage years (painful menstrual flows), then add several other types of pain as years go by (painful intercourse, painful bowel movements, pain just sitting around, pain away from the flow, etc.) Therefore, most patients with endometriosis that I see have a surgical diagnosis by the age of 30. If a patient describes the initial onset of her pain after the age of 35, endometriosis is very unlikely as the culprit.

History of extreme disability or dependence on narcotics
It is extremely rare for endometriosis to disable a patient to the point that she is in a wheelchair, dependent on crutches, or has been bedridden for several months and unable to work. It is unlikely such disability is due to endometriosis or that surgery will improve the situation.

Endometriosis is a painful condition that sometimes requires prescription narcotics to treat, and there is some potential for narcotic dependence, tolerance, or addiction. This means that such a patient will require more pain medicine after surgery, but she may also be addicted and request to stay in the hospital longer than necessary to receive IV or IM narcotic shots and may require withdrawal when she returns home.

One of the symptoms of withdrawal can be abdominal pain, which can sometimes overlap with possible endometriosis symptoms. Such patients have more work to do than just recover from surgery.

Pregnancy history
Although pregnancy doesn't make endometriosis go away, endometriosis can be a cause of infertility. So if a woman has been pregnant several times, it makes it more unlikely that she will have extensive endometriosis.

Response to medical therapy
Medical therapy doesn't eradicate endometriosis. The best it can do is to temporarily relieve pain while the patient's ovaries are suppressed. Once therapy is stopped, the ovaries wake back up in a few weeks and the pain recurs because the cause of the pain is still present.

Improvement on medical therapy doesn't prove the patient has endometriosis because several other causes of pain can improve while on medical therapy such as fibroids, adenomyosis, ovulation pain, and dysmenorrhea.

Findings at previous surgery
Old operative reports can be very helpful. Sometimes endometriosis is quite obvious and "classic" in its description and I can be fairly certain it is present even if no biopsy was taken to prove it. Sometimes obliteration of the cul-de-sac is described as "dense adhesions behind the cervix" or "the bowel was densely adherent to the uterus."

With such reports, the significance of this finding is missed. The patient has far more than just adhesions - she has invasive endometriosis of the uterosacral ligaments, cul-de-sac, rear of the cervix and usually the front wall of the rectum.

Response to surgical therapy
Laser vaporization and electrocoagulation can routinely leave endometriosis behind, especially if the disease is deep under the surface. I almost always find endometriosis in such patients, and I'm optimistic about their prognosis. But if the patient has had a good attempt at excision, I frequently find little or no endometriosis since excision can cure the disease. Pain persisting or recurring after aggressive excision of endometriosis is usually due to something else.

Previous pelvic exams
The cul-de-sac is easy to reach on internal pelvic exam in most patients. This area is usually tender whether the patient is on medical therapy or not. When I read that a previous pelvic exam has found tenderness or tender nodularity (lumps and bumps indicating invasive endometriosis) the likelihood is high that endometriosis is present and causing that finding.

If the exam reproduces the patient's pain, the prognosis for pain relief following surgery is high. If an exam doesn't reproduce the pain, either the doctor didn't hit the right area (short fingers?) or maybe endometriosis isn't even present. Such patients have a poor prognosis for pain relief following surgery.

Things that aren't helpful
Previous benign PAP smears, normal laboratory blood work, records of routine hospital medications taken following previous surgery, obstetrical records.

Things that are helpful
At the bare minimum, a detailed history is required from the patient, but previous operative reports are always useful. Some patients have had so many previous surgeries that they can't locate all their reports, especially old ones. The more recent ones are the most helpful.

Wrapping it up
Record reviews are an art but in my experience they can provide a striking amount of information with a good degree of accuracy and are an invaluable tool in clinical practice. You are not always directly on target, but the pelvic exam on a patient prior to surgery surgery can fill in a lot of the blanks and answer a lot of the questions.

Final judgment always must wait until the patient is recovered from surgery though, since pain which is due to endometriosis will be gone following its removal. Persistent pain means that pain was due to something else, not due to persistent "microscopic" disease or disease which is hiding somewhere where it can't be found.