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Perspectives on Endometriosis Management

Women sometimes don't know how to talk to their doctors about the pain and problems of endometriosis. Health care providers can help guide the conversation.

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This article has been archived. The information contained in it may no longer be accurate, and we will no longer be updating it. For our most up-to-date information, please visit our endometriosis information here.

By Zev Williams, MD, PhD, FACOG

It can be difficult for patients to communicate to their health care providers the extent to which a condition may be affecting their lives. That's why it's up to the health care provider to take the lead in asking insightful questions and establishing a comforting relationship where the patient feels safe.

When dealing with a condition like endometriosis, which can cause undesirable symptoms like painful intercourse and painful bowel movements, it is imperative the health care provider properly navigates each visit.

Understanding How Endometriosis Affects a Patient's Life

In a survey of diagnosed endometriosis patients, nearly 1 out of 3 endometriosis patients has a hard time expressing just how much pain they're experiencing. Some patients may minimize their pain to please their health care provider when, in fact, 7 out of 10 women being managed for endometriosis have pain throughout the month, according to an international multicenter survey.

The pain of endometriosis can be a very disruptive force in a woman's life. For example, a U.S. regional study by Fourquet and colleagues published in the journal Fertility and Sterility in 2010 looked at patients with pain from surgically confirmed endometriosis and found that endometriosis-related and coexisting symptoms disrupted various aspects of daily life, including day-to-day tasks, sexual relations, exercise, sleeping and social situations. Eighty-five percent of study participants reported a reduced quality of work as a result of their endometriosis-related pain.

In an international multicenter survey, 51 percent of endometriosis patients said their disease detrimentally affected their job.

The impact of the pain caused by endometriosis on a woman's life is not always visible to those around her, including her family, friends or even clinicians caring for her.

This underscores the need for health care providers to adapt their communication styles and medical interview skills to ensure that they're getting a complete picture of the patient's overall wellness.

Let's take a moment to shed some light on how to help improve this communication.

Ask Specific Questions Related to Endometriosis Symptoms

Unless specifically asked, a patient may not effectively communicate how endometriosis is affecting her life.

It's important a health care provider optimizes the time he or she has with a patient by proactively asking about the pain intensity and frequency, and the impact of all her endometriosis pain symptoms.

At every visit, ask how pain affects her life—not just during her period. Listen for symptoms that occur outside her period, like during sex or when going to the bathroom. And listen for any work or other activities that she may have missed because of unresolved pain.

Create an Open Dialogue to Explore All Endometriosis Pain Management Options

Endometriosis isn't solely about painful menstruation—patients often mention nonmenstrual pelvic pain and pain during intercourse. Estrogen is the fuel that drives these symptoms by promoting growth and proliferation of lesions and causing inflammation throughout the abdominal cavity. With this in mind, suppression of ovulation may only address painful menstruation and may not provide sufficient pain relief.

It's important to reassess pain management plans. The reassessment helps to make sure symptoms are being adequately treated and there are no patient concerns.

Recommending frequent follow-up visits, asking questions and listening for all signs and symptoms of unresolved endometriosis pain can help determine whether a patient's management plan is addressing all of her pain.

The types, the severity and the impact of endometriosis pain are important topics that should be discussed in all appointments with your patients.

Consider a Patient-Centered Approach to Disease Management

Many patients may be unaware of, or may not fully understand, the treatment options available to them. They rely on their health care providers to offer information and support.

Here are three key components to a patient-centered approach to disease management:

  1. Be open and transparent when counseling, and use a shared decision-making process to help alleviate uncertainty about the future course of the patient's condition.
  2. Use tools like a management plan that you can write together with your patient, allowing you to communicate the timing of future management decisions and pharmacological, surgical and/or other options.
  3. Have frequent follow up visits to help your patients understand their individualized management plan and goals. It's important to make your patients feel cared for individually and to let them know there is an expertly designed plan for their care.

Download these tools and resources at HerEndometriosisReality.com:
• Patient Interview Guide
• Action Plan
• Patient 3-Month Tracker

References:
1. Rhoades DR, McFarland KF, Finch WH, Johnson AO. Speaking and interruptions during primary care office visits. Fam Med. 2001;33(7):528 532.
2. Yeh J, Nagel EE. Patient satisfaction in obstetrics and gynecology: individualized patient-centered communication. Clin Med Insights Womens Health. 2010;3:23 32.
3. Vercellini P. Introduction: management of endometriosis: moving toward a problem oriented and patient centered approach. Fertil Steril. 2015;104(4):761-763.
4. Fortin AH VI, Dwamena FC, Frankel RM, Smith RC. Smith's Patient- Centered Interviewing An Evidence-Based Method, 3rd ed. New York, NY: McGraw Hill; 2012:16.
5. Data on file, AbbVie Inc., North Chicago, IL. Diagnosed Endometriosis Consumer Segmentation, 2015
6. Shilling V, Jenkins V, Fallowfield L. Factors affecting patient and clinician satisfaction with the clinical consultation: can communication skills training for clinicians improve satisfaction? Psychooncology. 2003;12(6):599-611.
7. De Graaff AA, D'Hooghe TM, Dunselman GAJ, Dirksen CD, Hummelshoj L, WERF EndoCost Consortium, Simoens S. The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Hum Reprod. 2013;28(10):2677 2685.
8. Fourquet J, Gao X, Zavala D, et al. Patients' report on how endometriosis affects health, work, and daily life. Fertil Steril. 2010;93(7):2424-2428.
9. Fourquet J, Baez L, Figueroa M, Iriarte I, Flores I. Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertil Steril. 2011;96(1):107-112.
10. Bulun SE. Mechanisms of disease: endometriosis. N Engl J Med. 2009;360(3):268-279.
11. Burney RO, Giudice LC. Pathogenesis and pathophysiology of endometriosis. Fertil Steril. 2012;98(3):511-519.
12. American College of Obstetricians and Gynecologists. Practice bulletin no. 114: management of endometriosis. Obstet Gynecol. 2010;116(1):223-236.
13. Vercellini P, Trespidi L, Colombo A, Vendola N, Marchini M, Crosignani PG. A gonadotropin-releasing hormone agonist versus a low-dose oral contraceptive for pelvic pain associated with endometriosis. Fertil Steril. 1993;60(1):75-79.
14. Dancet EAF, Apers S, Kremer JAM, Nejen WLDM, Sermeus W,
D'Hooghe TM. The patient-centeredness of endometriosis care and targets for improvement: a systematic review. Gynecol Obstet Invest. 2014;78(2):69-80.

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