Two experts in women’s health and pain management take you through the basics of this disease and offer guidance to help your patients cope.

Eight years. That’s how much time passes between the day the average woman with endometriosis tells her primary-care clinician about her symptoms to the day she receives a diagnosis. Meanwhile, the pain that results from the cyclical thickening of endometrial implants will likely make that woman’s life miserable for several days a month; at worst, it will ruin relationships, interrupt schooling, derail a career, and contribute to infertility.

Approximately 5.5 million North American women have endometriosis. The condition occurs most often in patients in their 30s and 40s, but it can affect any woman who menstruates.

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To learn what primary-care nurse practitioners and physician assistants can do to help limit suffering in women with endometriosis, The Clinical Advisor interviewed experts Gladys A. Wilkins, PA-C (obstetrics/gynecology), of Regional Healthcare Alliance in Oxon Hill, Md., and Lynn Hornick, RNC, WHNP, MS, of the Acute Pain Service and the Interventional Pain Clinic at the University of Colorado at Denver and Health Sciences Center.

Q: Which symptoms should alert primary-care providers (PCPs) to the possibility of endometriosis?
Ms. Wilkins: Patients often experience dysmenorrhea as well as pelvic pain in the two weeks before menstruation. Pelvic pain can occur at any time in the cycle, but most of the pain is around the time of the menstrual period since implants are often on the ovaries or fallopian tubes. Other symptoms are menstrual bleeding more than once a month and infertility.
Ms. Hornick: I would add dyspareunia, perimenstrual tenesmus, pain with urination, blood in the urine, sacral backache, and bowel symptoms, such as diarrhea.

Q: In what order should clinicians rule out the many other conditions that can be easily mistaken for endometriosis?
Ms. Wilkins: You can pick up depression and physical abuse from a simple history. Uterine fibroids, ovarian cysts, pelvic inflammatory disease, and sexually transmitted diseases (STDs) are easily ruled out with lab studies or imaging. Irritable bowel syndrome is more difficult to rule out.
Ms. Hornick: You can also check for tenderness at 11 of the body’s 18 tender points for a diagnosis of fibromyalgia. Lab tests can rule out anemia, hepatitis C, HIV, and various viruses, such as Epstein-Barr or herpes. An erythrocyte sedimentation rate can identify inflammation. But there is no test that can definitively confirm or rule out endometriosis. The gold standard is laparoscopy if you suspect endometriosis.

Q: A pelvic exam can yield clues to the presence of endometriosis. What should the clinician look for?
Ms. Hornick: A fixed uterus that’s hard to move, adhesions, a deviated cervix, or a stenotic opening of the cervix.
Ms. Wilkins: However, a pelvic exam is always inconclusive. It may not elicit pain or tenderness. Furthermore, the patient may not come in when experiencing a painful episode.

Q: At what time during the patient’s menstrual cycle should the pelvic exam take place?
Ms. Wilkins: In terms of diagnosing endometriosis, it probably wouldn’t make a difference.
Ms. Hornick: To get a clean sample, it’s better to check for STDs when the patient isn’t having a period.

Q: Earlier treatment improves the patient’s comfort. Does early treatment have any clinical benefits?
Ms. Wilkins: Preventing implants that occur outside the uterus would help decrease infertility as well as pelvic scar tissue and adhesions, which can cause pain.
Ms. Hornick: I’m very aggressive with pain because pain can turn into a neuropathic condition. The longer the patient is in pain, the more difficult it is to treat. Key endometriosis treatments include nonsteroidal anti-inflammatory drugs (NSAIDs), hormones—including oral contraceptives; gonadotropin-releasing hormone agonists, such as leuprolide (Lupron); and progestin/progesterone, such as medroxyprogesterone injection (Depo-Provera)—and surgery. The hormone treatment danazol (Danocrine) is also effective but has more adverse effects.

Q: How would you treat these three patients if you strongly suspected endometriosis?

• A teenage girl who isn’t sexually active:
Ms. Wilkins: The mainstay of treatment is birth control. Even for a young patient who isn’t sexually active but is having irregular bleeding, I would advise birth control pills. If the periods are only painful, I recommend pain management (e.g., NSAIDs). I’ve never put a teen on leuprolide therapy.
Ms. Hornick: I think you could go with leuprolide in a teen. The main thing is to suppress the ovaries.

• A woman who wants to become pregnant:
Ms. Hornick: I’d go with birth control because she can try to become pregnant the day she stops using it. She can take Depo-Provera monthly, but reversing the effects of this birth control method takes some time after you stop.
Ms. Wilkins: I’d be reluctant to go to birth control pills. In fact, all medications may be contraindicated. An alternative would be to have the woman delay her pregnancy plans. But if there is a definite suspicion of endometriosis, she’ll need treatment so she can become pregnant.

• A woman who isn’t planning to become pregnant:
Ms. Hornick: Leuprolide and medroxyprogesterone injection. These can cause bone thinning, so I tell patients to get 1,200 mg of calcium and 400 IU of vitamin D daily. If they stay on the drugs a year or longer, they should get a bone scan.
Ms. Wilkins: My practice doesn’t treat patients with leuprolide for more than a year because there are no clear studies on its use for that long. Leuprolide may be used initially, and then after a year we may continue the patient on medroxyprogesterone injection long-term. I’ve used oral progesterone in the past, but the side effect of breakthrough bleeding often leads to noncompliance and discontinuation before we can see if it’s beneficial.

Q: Are narcotics ever a good treatment option?
Ms. Wilkins: We try to stay away from narcotics. If the patient’s condition is so painful that she needs narcotics, then something more needs to be done.
Ms. Hornick: Narcotics are sometimes appropriate (you need to be aggressive at the start to stop the pain), but opioids are not the drug of choice. Hormone treatment is best because it treats the cause. I’d rather go to anti-inflammatories or the anticonvulsants—pregabalin (Lyrica) is a wonderful drug in this case. [Editor’s Note: This is an off-label use.] And I’d get her to a pain specialist for nerve blocks or spinal neurostimulation.

Q: Pregnancy is said to relieve endometriosis symptoms. Do symptoms return post-partum?
Ms. Wilkins: It’s true that pregnancy is a very good treatment—for obvious reasons. As for the postpartum effects, I have patients whose endometriosis didn’t recur after they had a baby and others whose endometriosis did recur.

Q: There’s often a disconnect between the pain the patient feels and the amount of disease seen through the laparoscope—a woman with a great deal of pain may have mild disease, while another with very little pain may have severe disease. How can PCPs use this information and best explain it to the patient?
Ms. Wilkins: There’s no easy explanation. I’d try to explain that the disconnect has to do with the patient’s pain tolerance and placement of implants.
Ms. Hornick: I believe that the combination of minuscule endometriosis and horrendous pain confirms the neuropathic concept. The nerves start talking to each other and keep sending pain signals. That’s why I’m aggressive with pain. In addition to treatment, I advise patients to stay away from pain triggers; smoking, for example, has been shown to aggravate pain conditions. Each patient also needs a healthy bowel and bladder. Pain affects everything, and everything affects pain, so we treat the whole patient.

Q: At what point should the PCP recommend laparoscopy?
Ms. Hornick: If the patient doesn’t respond to treatment after three months, consider laparoscopy. Diagnostic laparoscopy will be therapeutic as well if any pathology is identified.
Ms. Wilkins: I’d also recommend it if the patient is reluctant to try leuprolide—especially a young person, because there are a lot of adverse effects—or if she’s chronically taking pain medication or getting ulcers from NSAIDs.

Q: Is lesion excision during laparoscopy useful?
Ms. Wilkins: It does work; however, the implants can always recur. It’s best not to get into chronic surgery as a treatment. We cauterize the site of the endometriosis, then put the patient on birth control to prevent the condition long-term.
Ms. Hornick: Lesion excision isn’t helpful after a neuropathic condition develops.

Q: Does repeated laparoscopy cause damage?
Ms. Wilkins: Yes, it increases risk of adhesions and scar tissue.

Q: What misconceptions about endometriosis do patients bring to their PCP?
Ms. Wilkins: A patient who goes to the emergency department to seek treatment for severe pain may encounter a clinician who says it sounds like endometriosis, and the patient then believes she’s already been diagnosed.
Ms. Hornick: Women often think that painful periods are normal and that the pain is their cross to bear. Once it bothers them enough, they head for the drugstore and try OTC remedies. They may tough it out with ibuprofen for quite some time. Also, patients often think if something can be cut out, the pain will be cured. But when it’s a neuropathic condition, surgery won’t help. Finally, patients often believe they have cancer or some other condition. I always reassure and explain.

Q: What are common misconceptions PCPs have about endometriosis?
Ms. Wilkins: Though the majority of the pain is pelvic, clinicians sometimes don’t recognize that pain with a bowel movement is also a symptom of endometriosis.
Ms. Hornick: PCPs sometimes think the pain is all in the patient’s head. My specialty is pain management, and by the time a patient gets to me, she’s seen 9-13 doctors. She cries because I’m the first person who says it’s not all in her head.

Q: When is it time to refer?
Ms. Wilkins: If the patient doesn’t get any relief from recommended treatments within about six months, then you should refer her to an obstetrician/gynecologist.

Ms. Lippert is a medical writer and editor in the New York City area.