Enhancing the Doctor-Patient Dialogue About Endometriosis

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

When speaking with patients who have suspected or confirmed endometriosis, doctors must bear in mind that dialogue is by definition a two-way proposition. "Communication is not just about imparting information. It involves listening to the person you are imparting it to," said Mary Lou Ballweg, president and executive director of the Endometriosis Association.

Physicians should therefore be prepared to "really hear" what the patient is saying, she added, noting that they should also confront any implicit biases they may have -- for example: Is the patient very young? Is she a person of color? Does she trigger impatience because she has trouble articulating what she's trying to say? Is a subliminal element of sexism, racism, or homophobia clouding your view? Does the paucity of attention paid in medical schools to this common condition perhaps impact how seriously you take the symptoms?

Ballweg suggested that doctors treating new female patients not limit themselves to asking "boilerplate" questions such as "When was your last menstrual period?" and "Are your periods regular?"

Timely diagnosis of endometriosis is more likely if the physician has an expanded list of probing questions for distinguishing the condition from ordinary short-term menstrual discomfort, Ballweg continued: "Ask leading questions. Many may have been conditioned to see the early signs of endometriosis such as severe pain and nausea and vomiting as normal. Studies have shown that it takes about 4 years for a patient to report her symptoms and an additional four and a half to get referred to a specialist."

Ballweg also pointed to a sometimes inherent bias against female biology: For example, she said, "if a man has problems from an enlarged prostate, it would be addressed. If women were routinely screened for endometriosis as part of health exams, the huge health and socioeconomic costs of this disease could be reduced. Endometriosis is a leading cause of gynecologic hospitalization and has high rates of hysterectomy."

Paradigm Shift

Over the past 10 years not only has there been more recognition of the prevalence of endometriosis but there has also been a shift away from construing it as a cyclical, menstrual disorder to instead view it as a serious chronic systemic inflammatory disease. This change is particularly important, since endometriosis, though most prevalent in the reproductive age group, can in rare situations also occur in young girls before puberty and in postmenopausal women, particularly those on hormone-replacement therapy.

Doctors should therefore communicate the broad scope of the condition to patients, stressing that it affects about one in 10 women and that the signature pain most often associated with it is not just a "normal part of womanhood that must be endured." A diplomatic and respectful attitude is crucial, since many women report being "gaslighted" – i.e., having their symptoms downplayed or invalidated as psychological or an inevitable burden of their sex, Ballweg said.

Link to Other Diseases

"In the past decade, there's been more recognition of the relationship between endometriosis and other autoimmune diseases such as rheumatoid arthritis and inflammatory bowel disease," said Carmen Rodriguez, MD, of Northwell Health in Manhasset, New York. "We now know that the conditions involves an inflammatory process that can affect other parts of the body well beyond the pelvis."

Recognition of the condition's global impact should help patients come to terms with unexplained non-menstrual manifestations, including nausea; back, leg, or abdominal pain; and deceptively unrelated discomfort during sex, urination, or defecation.

Endometriotic lesions can affect the brain, the lungs, the kidneys, and the upper abdomen, and some patients also suffer from psychological manifestations such as depression, Rodriguez noted. There is also an emerging connection with fibromyalgia and generalized chronic pain, although that relationship needs further study, she added.

Early Diagnosis

Timely diagnosis is key, with options ranging from ultrasound and MRI to the gold standard of laparoscopy and biopsy, although typically it can still take 10 years to be diagnosed. Patients need to be made aware that even in the absence of signature severe pain and heavy menses and other symptoms, endometriosis can reduce ovarian reserve and impair fertility. It has also been associated with a greater risk of heart disease and stroke.

It's essential to get the inflammation under control and inform those who present with endometriosis of common non-menstrual extrapelvic complications, Rodriguez stressed.

Treatments

Although endometriosis was first identified more than 100 years ago, a cure remains elusive. Patients can be reassured, however, by the array of current therapeutic options to help control the condition.

Apart from over-the counter-analgesics, which most patients have typically already tried, estrogen-blocking agents can be prescribed that curb the growth of lesions ranging from combination oral contraceptives and progesterone to analogs and antagonists targeting gonadotropin-releasing hormone (GnRH) and even aromatase inhibitors used to treat postmenopausal breast cancer.

But patients need to understand that these agents can come with side effects such as irregular bleeding, headaches, and weight gain. GnRH treatments lead to menopausal symptoms including hot flashes, sleep disturbance, fatigue, vaginal dryness, joint pain, and bone loss. Low-dose add-back hormone replacements can alleviate these symptoms.

Unfortunately, however, relief may be temporary. "Even with treatment, patients may do well for 8 months or a year and then have a recurrence of symptoms," said Linda Nelson, MD, PhD, a reproductive endocrinology and infertility specialist at the University of Arizona College of Medicine in Phoenix.

Surgery

Nonresponders to medical therapy can be offered laparoscopic or, in rare situations if absolutely necessary, open surgery, but this must be done by a specialist in minimally invasive techniques to prevent scarring and safeguard the ovaries, Nelson said. "There are some patients who are diagnosed young in adolescence or their early 20s and have so much pain that they undergo multiple surgeries. In the worst-case scenario they can end up having a hysterectomy at a very early age."

Even after successful removal of endometriotic lesions, patients may experience a return of pain within 2 years.

Flare-ups

Breakthrough flare-up of symptoms are also possible. "These usually happen at the time of menstruation," Rodriguez noted. For some women, flares may be related to missed or off-schedule medication, overexertion, inadequate sleep, or high intake of pro-inflammatory foods such as alcohol, caffeine, sugar, and saturated fat.

The role of stress seems less clear. "No direct connection to stress, has been found," said Nelson. "The triggers and biomarkers of flares are not as well studied in endometriosis as in other inflammatory diseases."

She added that doctors should consider encouraging patients to keep a diary of what they've been eating, doing, and feeling before and during flare-ups.

Ultimately, attentive listening, effective communication, and early diagnosis are key.

Practical Guidance for Good Communication

• Try to help the patient be as relaxed as possible

• Make eye contact

• Ask detailed questions about the full range of symptoms

• Ask the patient to describe how endometriosis affects her quality of life -- work, earnings, school, and family and social relationships. The Endometriosis Impact Questionnaire can flesh these out

• Above all, listen attentively. If the patient's symptoms have previously been downplayed or invalidated, reassure her that there is now more awareness of the severity and broad-ranging impact of the disease as well as the availability of effective treatments

• Be prepared to refer her to another physician if you feel uncomfortable with her medical situation

Read previous installments of this series:

Part 1: Endometriosis: Understanding the Pathogenesis and Pathophysiology

Part 2: Diagnosing Endometriosis

Part 3: Managing Endometriosis: Research and Recommendations

Part 4: Case Study: Endometriosis or Hernia?

Part 5: Endometriosis: Fertility and Pregnancy

Part 6: The Latest on What to Know About Managing Endometriomas