Endometriosis in teenagers

Endometriosis is an equal opportunity disease, affecting women of all ages. The youngest patient reported in the literature was 10.5 years of age, with only two previous menstrual flows. The oldest was 78.

Since 1978, I've performed surgery on over 3000 patients with endometriosis, with over 100 of them under the age of 20. My youngest patient was 13 years old. Teenagers with endometriosis typically have had pain with the first few menstrual flows, although some have pain after a few years. The medical term for painful menstrual flows is dysmenorrhea, meaning difficult menstrual flows.

Many people naturally think of dysmenorrhea as being uterine cramping. This may be true, but close questioning often reveals that other types of pain may be present during the flow.

For example, some patients may have the onset of pelvic pain up to two weeks before the flow begins. This pain may be a sharp, burning type of pain, or it may feel like cramping even before the flow begins. The pain may increase as the time for the flow approaches, but the patient may successfully control the pain with over the counter medications and so it is not noticed.

This same pain may increase dramatically with the onset of the menstrual flow, resulting in time off from school, work, or activities. While severe uterine cramping may be superimposed on top of this pain, cramps may not be the only component to the pain.

Since the patient may seem to be so ill during the flow, the pain leading up to the flow may seem trivial in comparison. Thus, teenagers are often told by their mothers, teachers and friends that, "This is just part of being a woman" or "It's just cramps with your period". This well-meaning reassurance can lead to a delay in the diagnosis of endometriosis of several years.

As teenage women become sexually active, they may notice that sexual intercourse is painful because the most common site of occurrence of endometriosis is the cul-de-sac, which lies right at the end of the vagina behind the cervix. cul-de-sac disease can also cause pain with bowel movements, particularly during the menstrual flow, since stool passing through the adjacent rectum can scrape past the painful areas of disease in the cul-de-sac or uterosacral ligaments.

Sometimes the patient may notice pain while sitting, since the soft tissue of the crotch area is pushed by the seat upward against the cul-de-sac. If a patient has an endometrioma cyst of an ovary, there may be a distinct pain off on the side that is involved, occasionally with radiation of pain around the flank or down the leg.

Medical evaluation
A difficult question for parents of teenagers suffering from pelvic pain is what to do about it, since many don't want to overreact if "this is only cramps". The first step is to realize that if a teen is missing school or daily activities because of pelvic pain, this is not normal and medical advice should be sought. If the teenager is still seeing a pediatrician, this would be an acceptable choice initially, although pediatricians may not have much insight into pelvic pain and may feel uncomfortable performing a pelvic exam. It may be better for a gynecologist to be consulted, although not all gynecologists are equally skilled at diagnosing or treating endometriosis; many OB/GYNs focus their practice on obstetrical care rather than gynecology.

Consultation should include a pelvic or rectal exam, although this does not always occur. There is considerable variability among doctors in performing pelvic examinations. Examination results by different doctors on the same patient can be interpreted differently due to:

  • Variation in length of fingers (doctors with short fingers can't reach the cul-de-sac.
  • Gentleness (not all doctors perform gentle exams).
  • Experience (not all doctors know what areas to palpate).
  • Expectations of what will be found (some doctors may not want to find anything, others may expect to find pelvic infections).
  • Expectation of a young patient's reaction to an exam (pelvic pain during the exam may be judged a normal embarrassed response to the first pelvic exam).

Endometriosis starts out as flat spots of various colors on pelvic surfaces, so it won't usually show up on ultrasound, CT, or MRI exams. Barium studies of the bowel are also usually normal, as are blood tests. The patient's pain may be trivialized because of these normal test results. This could lead to a delay of diagnosis, since it seems like nothing is wrong other than "just cramps" and the doctor may be hesitant to recommend surgical evaluation without some obvious target to look for.

Unfortunately, surgery is usually the only way to be certain of the diagnosis. Fortunately, the decision to perform surgery is easy to make: if a patient is missing daily activities because of pain which is not responding to medical management in the doctor's office, or if a patient is taking narcotics to control pain, then surgery is needed.

What is the treatment?
The word "treatment" can be interpreted differently by different doctors. I think of "treatment" as something that results in the eradication of the cause of disease, such as antibiotics killing bacteria in the urine that were causing a urinary tract infection. Others think of treatment as doing anything to a disease, whether the treatment eradicates it or not.

Some doctors believe that doing nothing is treatment. It is thought that reassurance that "everything is normal" will be enough for the patient to cope with her pain. The obvious question that is missed with this approach is "Why did the patient, and frequently her parents, arrange time off from work or school to come to the doctor for disruptive pain? Just to waste time?".

I don't think benign neglect is good management. Non-steroidal anti-inflammatory drugs (such Motrin, Naprosyn, Ponstel, etc.) may be prescribed and can help some patients to a degree. Narcotic pills (such as Vicodin, Tylenol with codeine, Darvocet, Percocet, and Oxycontin) may be required for severe pain, and this should raise a red flag for parents, patients, and doctors because it's clearly not normal for anyone to be taking narcotics, particularly teenagers who should be relatively carefree.

Blaming STDs
In medical school, many doctors are taught that sexually transmitted diseases (STDs) are rampant because of sexually promiscuous women. This is clearly a simplistic and sexist viewpoint, but it is commonly encountered during the initial evaluation of pelvic pain. Even when a teenager may give a history of being a virgin, she may be subjected to testing for and antibiotic treatment of presumed STDs. Sometimes the patient may be admitted to the hospital for intravenous antibiotic therapy.

Since the severe pain usually lets up after some time, the conclusions are made that the patient is responding to medication and that she really did have an STD despite negative cultures. Some patients undergo repeated rounds of antibiotic treatment before STDs are discarded as the cause of the pain.

Frequently birth control pills are prescribed. Although these may be very helpful in controlling symptoms for some patients, there is no medicine that eradicates endometriosis.

Treatment before diagnosis?
One pharmaceutical manufacturer, the maker of Lupron, has worked for several years to introduce a new paradigm in treatment of endometriosis: treating with injections of Lupron for endometriosis without a firm surgical diagnosis. It has even paid for a colorful monograph which was mailed to all gynecologists in which various endometriosis "experts" state that laparoscopy is useless in the diagnosis and treatment of endometriosis because it is done so badly. While diagnostic laparoscopy for endometriosis may not always be done well, should one condemn a proven tool because some practitioners lack the skill or experience to use it effectively? Wouldn't it make more sense to improve knowledge and skill regarding the use of the tool?

The conclusion condemning laparoscopy can also be viewed as somewhat self-serving. Treating all pelvic pain with a particular drug would certainly be lucrative for the manufacturer. Further, this approach could lead to a delay of diagnosis of endometriosis or another true cause of pelvic pain.

Though it is stated that a decrease of pain during Lupron therapy proves that the patient has endometriosis, this is certainly not the case. Any estrogen-dependent pain may be relieved by Lupron therapy, including uterine fibroids, uterine adenomyosis, dysmenorrhea (since the menstrual flows are stopped), ovulation pain (since the patient doesn't ovulate on Lupron), unknown causes of pelvic pain, and endometriosis. So a response to Lupron narrows the list of possible diagnoses to five or six.

While the relief of symptoms may be very welcome, it must be remembered that often, as in this case, medicines treat only the symptoms, not the disease. No medicine eradicates endometriosis. When the effect of the medicine wears off, most women will resume pelvic pain shortly after they resume their menstrual flows.

Excision of endometriosis
Since medicines treat only symptoms, surgery is the only treatment for endometriosis. The question then becomes "What is the best surgical treatment?". The answer is simple: the one that eradicates all of the disease consistently in all patients. I think excision of endometriosis approaches this goal most closely. While laser vaporization and electrocoagulation have some potential of destroying superficial disease, deeper disease may escape destruction, and the surgeon may be hesitant to burn over vital structures.

Results of treatment
The mechanism of origin of endometriosis can affect surgical treatment. Endometriosis is probably caused by embryologically patterned metaplasia. This means that there are certain tracts of tissue laid down in the pelvis during embryonic formation that will turn into endometriosis under estrogen stimulation after puberty. These tracts of tissue exist not only on the peritoneal surface, but as a substrate under the surface.

These tissue tracts begin to form endometriosis during the teenage years, ending in the mid-twenties. Endometriosis in teenagers is therefore earlier disease which can be superficial, making it easier to remove. It can also be more subtle in appearance, so it can be missed more easily if the surgeon doesn't know about all the visual appearances of the disease.

Additionally, not all of the disease may have formed by the time a teenager undergoes surgery. Based on my cumulative research since 1978, teenagers have an average of 2.9 pelvic areas of endometriosis and 0.13 intestinal areas compared to 3.6 pelvic areas and 0.41 intestinal areas among women over 20 with the disease. This means that not all endometriosis may have formed by the time a teenager undergoes surgery, so there is some potential for disease to form later.

While it would be ideal to operate on women at the age of 25, it is unfair to withhold surgery from teenagers because of their age. Pain due to endometriosis responds extremely well to removal of the disease. Unfortunately, not all pelvic pain is due to endometriosis, and patients with endometriosis may be at increased risk for later development of other gynecological problems such as uterine fibroids and uterine adenomyosis, although recurrent pain is frequently misdiagnosed as endometriosis, even when none is found at repeat surgery. Also, true uterine cramping does not always respond to removal of endometriosis alone, so a presacral neurectomy (a nerve cutting procedure) may be helpful for cramps.

Impact on infertility
Many doctors recommend against surgery because of the belief that surgery will reduce a teen's fertility. However, fertility after excision of endometriosis in teenagers is excellent. Among 48 women that underwent excision of endometriosis as teenagers (in my practice) that responded to a questionnaire in 1999, 17 had attempted pregnancy and 13 of these had conceived. These patients had waited up to 81 months after surgery to attempt conception.

Thus, there is no evidence that excision of endometriosis reduces a teen's fertility or that there is a "window" of six to nine months after surgery during which conception can only occur.

Doctors make endometriosis more difficult than it really is. Endometriosis is the most common cause of pelvic pain in teenagers and it is treatable only by surgery. The best surgery is removal of all disease, and this results in excellent pain relief and excellent future fertility for teenagers with the disease.