Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care

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1 CE ARTICLE Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care Alexandra J. Mao, MA, MSN, RN, ANP-BC (Adult Nurse Practitioner) 1 &JoyceK.Anastasi,PhD, DrNP, FAAN (Independence Foundation Professor) 2 1 Columbia University School of Nursing, New York, New York 2 New York University College of Nursing, New York, New York Keywords Endometriosis; infertility; pelvic pain; women s health; advanced practice nurse; primary care. Correspondence Alexandra J. Mao, MA, MSN, RN, ANP-BC, Columbia University School of Nursing, New York, NY Tel: ; ajm2111@columbia.edu Received: June 2008; accepted: October 2008 doi: /j x To obtain CE credit for this activity, go to and click on the CE Center. Locate the listing for this article and complete the post-test. Follow the instructions to print your CE certificate. Abstract Purpose: To discuss the etiology, clinical presentation, diagnosis, and management of endometriosis for the advanced practice nurse (APN) in primary care. Data sources: Selected research, clinical studies, clinical practice guidelines, and review articles. Conclusions: Commonly encountered by the APN in primary care, endometriosis is a chronic, progressive inflammatory disease characterized by endometrial lesions, cysts, fibrosis, or adhesions in the pelvic cavity, causing chronic pelvic pain and infertility in women of reproductive age. Because of its frequently normal physical examination findings, variable clinical presentations, and nonspecific, overlapping symptoms with other conditions, endometriosis can be difficult to diagnose. As there currently are no accurate noninvasive diagnostic tests specific for endometriosis, it is imperative for the APN to become knowledgeable about the etiology, clinical presentation, diagnosis, and current treatment options of this disease. Implications for practice: The APN in primary care plays an essential role in health promotion through disease management and infertility prevention by providing support and much needed information to the patient with endometriosis. APNs can also facilitate quality of care and manage treatments effectively to improve quality of life, reduce pain, and prevent further progression of disease. Practice recommendations include timely diagnosis, pain management, infertility counseling, patient education, and support for quality of life issues. Introduction Frequently seen by the advanced practice nurse (APN) in primary care, endometriosis is one of the most common causes of chronic pelvic pain and infertility in reproductive-age women across all ethnic and socioeconomic backgrounds (Jackson & Telner, 2006; Kennedy et al., 2005). In 1690, Daniel Shroen, a German physician, first depicted endometriosis as sores and adhesions throughout the bowel and bladder areas (Lundeberg & Lund, 2008). Endometriosis is a progressive medical condition characterized by the presence of endometrial tissue deposits outside the uterus, which causes a chronic, inflammatory process and a tendency for adhesion formation (Jackson & Telner; Kennedy et al.; Mounsey, Wilgus, & Slawson, 2006). Most ectopic endometrial deposits grow on the ovaries, peritoneum, uterosacral ligaments, pouch of Douglas, and retrovaginal septum, often causing pain or infertility (Jackson & Telner). Endometrial deposits have also been found outside the pelvic cavity such as the lungs and brain (Kennedy et al.). Patients with endometriosis often present with a varied combination of signs and symptoms such as pelvic pain, dysmenorrhea, deep pelvic dyspareunia (pain with sexual intercourse), Journal of the American Academy of Nurse Practitioners 22 (2010) The Author(s) 109 Journal compilation 2010 American Academy of Nurse Practitioners

2 Diagnosis and management of endometriosis A.J. Mao & J.K. Anastasi dyschezia (difficulty or pain with defecation), pain with micturition, low back pain, and infertility (Mounsey et al.; Pugsley & Ballard, 2007). In order to promote quality of life and reduce pain symptoms, effective management of endometriosis requires prompt diagnosis and an individualized, multidisciplinary approach to treatment. In endometriosis, health promotion through successful disease management and pain reduction is essential to improve quality of life and prevent further disease progression, especially infertility in reproductive-age women. Epidemiology Endometriosis affects approximately 10% of women in the general population with a peak incidence in the age range (Eskenazi & Warner, 1997; Nasir & Bope, 2004). Among women with pelvic pain, a much higher prevalence of endometriosis of up to 82% occurs (Eskenazi & Warner). In women undergoing evaluation for infertility, the prevalence of endometriosis is 21% (Eskenazi & Warner), while its prevalence in women undergoing sterilization ranges from 3.7% to 6% (Sangi-Haghpeykar & Poindexter, 1995). In the United States from 1990 to 1998, endometriosis was the third most common gynecologic diagnosis noted in the hospital discharge records of reproductive-age women, years (Velebil, Wingo, Xia, Wilcox, & Peterson, 1995). Etiology and pathophysiology Endometriosis most commonly affects the pelvic organs and the peritoneum. However, the disease can occasionally affect other organs such as the lungs and brain (Kennedy et al., 2005). The extent and stages of the disease range from small, superficial lesions on pelvic organs to ovarian, endometriotic endometriomas (cysts >3 cm in diameter) and deep fibrosis with adhesions, which significantly distort the pelvic anatomy (Kennedy et al.). The endometriosis classification system developed by the American Society for Reproductive Medicine (1997) ranks disease severity as one of four stages (Stage I, Stage II, Stage III, and Stage IV) from minimal to severe disease based on laparoscopic findings that measure the size, depth, and location of the endometriotic lesions. This classification system may help in infertility prognosis and management, but correlates poorly with the severity or type of pain symptoms (Kennedy et al.), causing difficulties in providing adequate treatment. Although the etiology of endometriosis remains unclear, current research has suggested several theories, which attempt to explain and better understand the pathogenesis of endometriosis. The most widely accepted theory involves the retrograde menstrual flow of endometrial tissue through the fallopian tubes during menstruation into the peritoneal cavity (Mounsey et al., 2006). Another theory suggests celomic metaplasia, in which the mesothelial, peritoneal cells along the ovaries evolve into endometrial tissue because of various triggers such as menses, toxins, or immune factors (Jackson & Telner, 2006; Mounsey et al.). The embryo rests theory suggests that Mullerian remnants in the rectovaginal area differentiate into endometrial glandular cells, while other theories involve hematological and lymphatic spread of endometrial tissue (Jackson & Telner; Mounsey et al.). Risk factors, such as genetic markers, early menarche, late menopause, shorter menstrual cycles, and longer, heavy menstrual flow, increase a woman s propensity for endometriosis as a result of higher exposure to endometrial tissue and estrogen during menstruation (Eskenazi & Warner, 1997; Jackson & Telner, 2006). Due to adhesions from endometrial deposits that distort the pelvic anatomy and cause impaired ovulation, endometriosis is closely associated with infertility (Mounsey et al., 2006). Moreover, a cross-sectional survey from 1998 showed that autoimmune diseases, hypothyroidism, fibromyalgia, chronic fatigue syndrome, asthma, and allergies have a significantly higher prevalence in women with endometriosis than in women from the general U.S. population (D Hooghe & Hummelshoj, 2006; Sinaii, Cleary, Ballweg, Niemann, & Stratton, 2002). The presence of endometrial tissue outside the uterus has also been found in premenarcheal girls without an abnormal obstruction of the reproductive tract, which supports the theory that one presumed etiology of endometriosis is not sufficient (D Hooghe & Hummelshoj). Clinical presentation The clinical presentation of endometriosis varies in its severity and impact on the physical, mental, and social well-being of both symptomatic and asymptomatic women. Endometriosis typically presents with chronic pelvic pain (>6 months), dysmenorrhea, dyspareunia, low back pain, dyschezia, dysuria, or infertility (Mounsey et al., 2006). Of these symptoms, chronic pelvic pain is the most common chief complaint motivating a woman to seek care. Pelvic pain tends to increase in severity premenstrually and subsides after menses cessation, but may also be noncyclic (Farquhar, 2007; Jackson & Telner, 2006; Mounsey et al.). Patients with endometriosis may also present with menorrhagia, metrorrhagia, and sometimes cyclical bowel and bladder symptoms, making endometriosis harder to distinguish from other differential diagnoses such as irritable bowel syndrome (IBS) or interstitial cystitis (Jackson & Telner). In order to 110

3 A.J. Mao & J.K. Anastasi Diagnosis and management of endometriosis effectively manage pain symptoms in the primary care setting, the APN should suspect endometriosis in women who present with any of the above complaints or dysmenorrhea after years of pain-free menses (Jackson & Telner). In such cases, detailed history-taking and clinical assessment with careful consideration of endometriosis are essential in determining the correct diagnosis early on in primary care for prompt treatment and follow-up care, because of the risk for infertility and malignancy. Malignant transformation of endometriosis to ovarian carcinoma is a rare complication, often suggested by the enlargement of ovarian endometrioma (Kennedy et al., 2005). Thus, endometriosis should be detected early and monitored closely in reproductive-age women to preserve fertility and prevent development of endometriosisassociated ovarian carcinoma. Endometriosis and primary dysmenorrhea are the two most frequent causes of chronic pelvic pain, a common presentation in both conditions (Nasir & Bope, 2004). As such, it is important to gain a better understanding of ways to differentiate endometriosis from primary dysmenorrhea, in order to prevent misdiagnosis. Primary dysmenorrhea refers to the occurrence of recurrent pelvic pain during menses in the absence of pelvic pathology (Smith & Kaunitz, 2008). Women with primary dysmenorrhea characteristically present with intermittent, sharp, crampy, spasm-like pain, often located in the midline, suprapubic region that may radiate to the lower back or thighs (Nasir & Bope). While endometriosisassociated pelvic pain may be cyclic or noncyclic and vary in onset and duration, primary dysmenorrhea pain occurs only during ovulatory cycles, typically beginning just before or with the onset of menstrual bleeding and subsiding over h (Smith & Kaunitz). Contrasting with the more localized symptoms of endometriosis, common systemic symptoms of diarrhea, nausea, vomiting, fatigue, headache, lightheadedness, fever, or malaise also accompany pelvic pain in primary dysmenorrhea. Unlike endometriosis, which tends to first present in adult women years of age, primary dysmenorrhea typically begins during adolescence within 3 years of menses after the establishment of ovulatory cycles (Nasir & Bope). History Determining the diagnosis of endometriosis based on clinical presentation alone can be difficult because of its wide range of symptoms and significant overlap with other gynecologic and nongynecologic conditions, such as chronic pelvic inflammatory disease (PID) and IBS, respectively (Royal College of Obstetricians and Gynaecologists, 2006). Consequently, a diagnostic delay of up to 12 years from symptom onset frequently occurs, Table 1 Potential differential diagnoses of endometriosis by symptom Symptom System Differential Diagnosis Chronic Pelvic Pain Gynecologic Adenomyosis Endometritis Neoplasms of the ovary, bowel, or bladder (benign/malignant) Pelvic adhesions Pelvic inflammatory disease (PID) Pelvic vascular congestion Ovarian torsion Ovarian cysts Uterine leiomyomas (fibroids) Urologic Interstitial cystitis Recurrent urinary tract infection (UTI) Chronic urethral syndrome Gastrointestinal Irritable bowel syndrome (IBS) Inflammatory bowel disease (IBD) Diverticular colitis Chronic intermittent bowel obstruction Abdominal wall hernia Chronic constipation Carcinoma Musculoskeletal Disk herniation Fibromyalgia Pelvic floor tension myalgia Neurological Neuralgia Neuropathic pain Psychological Somatization Depression Sleep disorders History of physical or sexual abuse Dysmenorrhea Gynecologic Primary dysmenorrhea Secondary dysmenorrhea e.g., adenomyosis, cervical stenosis, PID, infection, intrauterine adhesions, ovarian cysts, neoplasms, uterine polyps or leiomyomas (fibroids), IBD Dyspareunia Gynecologic Infection Decreased lubrication or vaginal expansion due to poor arousal Adnexal prolapse Pelvic adhesions PID Pelvic vascular congestion Uterine leiomyomas (fibroids) Vaginal atrophy Urologic Interstitial cystitis UTI Urethral syndrome Stones 111

4 Diagnosis and management of endometriosis A.J. Mao & J.K. Anastasi Table 1 Continued Symptom System Differential Diagnosis Gastrointestinal IBS IBD Constipation Musculoskeletal Fibromyalgia Levator spasm Pelvic relaxation or malposition Psychological Somatization Vaginismus History of sexual trauma or abuse Infertility Gynecologic PID Polycystic ovary syndrome Uterine fibroids or polyps Tubal disease or tubal infection Pelvic adhesions Anovulation/ovulatory dysfunction Luteal phase deficiency Cervical factors e.g., mucus, antibodies, stenosis Congenital abnormalities (tubal, uterine) Source: American College of Obstetrics and Gynecology, 1996, 2006; Farquhar, 2007; Howard, 2008; Mounsey et al., especially in adolescent women (Arruda, Petta, Abrao, & Benetti-Pinto, 2003). Thus, a complete history is imperative in the timely, proper diagnosis of endometriosis and will assist in excluding other similarly presenting differential diagnoses such as polycystic ovary syndrome, fibroid tumors, and interstitial cystitis (see Table 1) (American College of Obstetrics and Gynecology, 1996, 2006; Nasir & Bope, 2004). To detect any abnormalities, perform a comprehensive review of systems with a thorough menstrual and reproductive history, which includes questions about age at menarche/menopause, cycle lengths, menstrual flow qualities, contraception methods used, prior history of sexually transmitted infections, number of pregnancies, miscarriages, abortions, and any attempts to conceive for a period of time (Jackson & Telner, 2006; Markle, 2001). A detailed menstrual and reproductive history is crucial, as many women with endometriosis can present without symptoms or with variable symptoms. Sometimes patients receive the diagnosis of endometriosis only when they are being evaluated for infertility (Kennedy et al., 2005). The practitioner should ask about any abnormal vaginal bleeding or discharge and address any pain issues associated with menstruation, intercourse, defecation, or micturition. Having the patient keep a pain journal that chronicles the character and frequency of pain will also assist in ascertaining if the pain is cyclic and associated with bowel or bladder function (Laufer, 2008). In addition to asking focused questions about the pattern, quality, onset, and frequency of pain, inquire about any family history of similar problems, health maintenance, and social history such as nutrition, exercise, and stress, in order to determine the appropriate diagnostic workup plan and obtain a clearer understanding of the clinical presentation (Markle). Because symptoms vary among women with endometriosis from asymptomatic to debilitating, it is essential to be knowledgeable about the range of symptoms that indicate possible endometriosis. The primary symptoms that might inform a diagnosis include chronic noncyclic pelvic pain, deep pelvic dyspareunia, dysmenorrhea, pelvic heaviness, radiating pain to the thighs, chronic low back pain, impaired fertility, and cyclical bowel or bladder symptoms with or without abnormal bleeding, such as dysuria, diarrhea, dyschezia during menses, and constipation as a result of the pain (Farquhar, 2007; Lowdermilk & Perry, 2004). Physical examination Because physical examination findings are typically unremarkable, diagnosis of endometriosis is frequently determined empirically on the basis of clinical history (Winkel, 2003). However, there are some well-studied clinical assessment tools that are most reliable for aiding in the diagnosis of endometriosis when performed during menstruation. The practitioner should do a thorough rectal and bimanual pelvic examination, palpating for a fixed retroverted uterus, localized adnexal tenderness, uterine motion tenderness, tender adnexal masses from endometriomas, enlarged ovaries, and tender nodules on the uterosacral ligaments or in the posterior vaginal fornix (Jackson & Telner, 2006; Mounsey et al., 2006). These physical examination findings suggest endometriosis and can vary, depending on the size and location of the ectopic endometrial deposits. Although women with endometriosis often have normal pelvic findings, the most common abnormal examination finding is tenderness when palpating the posterior vaginal fornix (Jackson & Telner). If deeply infiltrating nodules are palpated on the uterosacral ligaments or in the pouch of Douglas, and/or visible lesions are seen in the posterior vaginal fornix or on the cervix, a diagnosis of endometriosis is more likely based on such clinical evidence (Royal College of Obstetricians and Gynaecologists, 2006). The reliability of detecting deeply infiltrating nodules improves most when performing the physical examination during menstruation (Royal College of Obstetricians and Gynaecologists). 112

5 A.J. Mao & J.K. Anastasi Diagnosis and management of endometriosis The physical examination should also be focused to exclude nongynecologic causes of pelvic pain, especially bowel and bladder differentials (Jackson & Telner, 2006). For the workup during the physical examination, consider obtaining (a) a complete blood count with differential and erythrocyte sedimentation rate to screen for a chronic infectious or inflammatory process; (b) urinalysis and urine culture to rule out urinary tract causes of pain; and (c) pregnancy test, Pap smear, Wet prep, and cultures for gonorrhea and chlamydia when appropriate (Laufer, 2008). Diagnostic studies A confirmed diagnosis of endometriosis requires visualization of the pelvis via laparoscopy for ectopic endometrial lesions as the gold standard, preferred diagnostic test, unless disease is visible in the posterior vaginal fornix or other site (Kennedy et al., 2005). Laparoscopy remains the only screening and diagnostic tool that can accurately exclude and detect endometriosis (Farquhar, 2007). If indicated by deeply infiltrating disease, or ovarian endometrioma on laparoscopy, a biopsy for histological confirmation of at least one lesion should be taken to identify endometriosis and to rule out malignancy (Kennedy et al.). The degree of pain does not always parallel the severity of findings on diagnostic laparoscopy (Jackson & Telner, 2006). Deeply infiltrating endometriosis, for instance, may have the appearance of minimal disease via laparoscopy, causing an underestimation of disease severity and poor management. Among all lesions visualized and biopsied, only 45% have a confirmed diagnosis of endometriosis (Winkel, 2003). Because of the lack of sufficiently sensitive and specific diagnostic tests for endometriosis, the American College of Obstetrics and Gynecology (1996) recommends a pretreatment diagnostic plan to rule out other causes of pelvic pain such as chronic PID, uterine leiomyomas (fibroids), and ovarian cysts, as well as nongynecologic causes of pelvic pain, such as gastrointestinal, urologic, and musculoskeletal disorders (see Table 1) (Mounsey et al., 2006). Transvaginal ultrasound (TVS) assists in identifying and ruling out the diagnosis of an ovarian endometrioma, and may also aid in diagnosing endometriosis with bladder or rectovaginal involvement (Kennedy et al., 2005; Moore et al., 2002). TVS also performs better visualization of the uterine cavity and endometrium for diagnosis of retroperitoneal and uterosacral lesions, but it does not accurately detect peritoneal lesions or small endometriomas (Brosens, Puttemans, Campo, Gordts, & Brosens, 2003). Transabdominal ultrasound, on the other hand, is the preferred diagnostic tool for visualizing large pelvic masses (Bell & Colledge, as cited in Jackson & Telner, 2006). Pelvic ultrasound might be useful for diagnosing endometriosis, specifically if an endometrioma is detected, and it can assist in ruling out or identifying other structural causes of pelvic pain such as ovarian cysts, fibroids, tumors, torsion, and genital tract anomalies (Jackson & Telner; Laufer, 2008). Although not ordered routinely, computed tomography and magnetic resonance imaging (MRI) are occasionally helpful for visualizing pelvic masses, subperitoneal deposits, and the extent of the disease, especially in cases of deeply infiltrating endometriosis (Farquhar, 2007; Jackson & Telner). MRI exhibits high sensitivity in detecting endometrial cysts, but has poor accuracy in diagnosing endometriosis (Mounsey et al., 2006). If deeply infiltrating endometriosis is suggested by positive physical findings such as palpable uterosacral nodules, visible vaginal lesions, or adnexal enlargement, the APN should assess for ureteral, bladder, and bowel involvement and consider ordering a transvaginal/pelvic ultrasound or MRI to explore the extent of disease present (Kennedy et al.). No known blood tests or serum markers to diagnose endometriosis have demonstrated enough accuracy for routine use in clinical practice (Mounsey et al., 2006). Although measurement of serum cancer antigen CA 125 levels may show elevation in endometriosis, it has limited value as a diagnostic test, compared to laparoscopy (Royal College of Obstetricians and Gynaecologists, 2006). However, measuring serum CA 125 levels may help monitor disease severity and progression for treatment follow-up (Mounsey et al.). If endometriosis is highly suspected based on clinical presentation, history, or physical examination findings, consider empirical diagnosis of endometriosis and discuss a treatment plan based on symptom severity with the patient. After empiric therapy, if the patient experiences persistent or recurrent symptoms with no improvement, refer the patient for laparoscopy, the preferred diagnostic test for endometriosis, especially if fertility is desired (Mounsey et al., 2006). Management The primary goals of therapy for endometriosis aim to relieve pain symptoms and restore or maintain fertility. Individual treatment plans rely on symptom severity, recurrence, and desire to conceive (see Figure S1). Although specific treatment goals may differ according to each patient s symptom severity, the APN and the patient should consider a multidisciplinary, integrative approach for long-term pain management in the treatment of endometriosis. Based on clinical presentation, the practitioner should empirically treat pain symptoms suggestive of 113

6 Diagnosis and management of endometriosis A.J. Mao & J.K. Anastasi endometriosis even without a definitive diagnosis. Optimal empirical treatment requires multidisciplinary management that includes adequate analgesia with nonsteroidal anti-inflammatory drugs (NSAIDs), nutritional therapy, counseling, or combined oral contraceptive pills (COCPs) (Kennedy et al., 2005). First-line medical therapies to reduce endometriosis-associated pain symptoms include NSAIDs and low-dose COCPs (Jackson & Telner, 2006; Mounsey et al., 2006; Nasir & Bope, 2004). If these first-line therapies prove ineffective after 3 months, second-line medical treatment options for endometriosis include progestins, androgenic agents (e.g., danazol), gonadotropin-releasing hormone (GnRH) agonist analogs (e.g., leuprolide), and antiprogestogens (e.g., gestrinone) (Jackson & Telner, 2006; Mounsey et al., 2006). These medications are equally effective in managing moderate to severe endometriosis-associated pain, but have greater cost and side effect profiles, limiting their use to 6 months in treatment duration (Jackson & Telner; Moore et al., 2002). Some second-line medical therapies after the failure of first-line, empirical treatment may be outside the scope of common primary care pharmacotherapy, in which case the APN should provide appropriate referral and collaborative management with a gynecologist (Mounsey et al.). It is essential to note in patient teaching that symptoms frequently recur after discontinuation of therapy with mild and severe disease, 37% and 74% of the time, respectively (Winkel, 2003). If symptoms persist, worsen, or do not respond adequately after 3 months of empirical treatment, the APN and patient should consider hormonal therapy with progestins, which may include levonorgestrel intrauterine system, oral or intramuscular medroxyprogesterone acetate, commonly used in the primary care setting (Jackson & Telner, 2006; Mounsey et al., 2006). Despite its greater side effect profile, progestin therapy for 6 months acts similarly to COCPs in the suppression of ovarian function, thereby reducing pain symptoms and providing an effective treatment option when estrogen therapy is contraindicated (Jackson & Telner; Kennedy et al., 2005). If medical management and other noninvasive, complementary interventions fail to adequately reduce pain symptoms, especially in women wishing to conceive, surgical treatment options include excision or ablation of endometrial lesions with or without laparoscopic uterine nerve ablation (LUNA), depending on the severity of endometriosis found (Jackson & Telner, 2006; Kennedy et al., 2005). It is crucial to note that surgical ablation of endometrial lesions at the time of laparoscopic diagnosis is preferred over medical treatment in patients with endometriosis-associated infertility, desiring pregnancy (Smith, Pfeifer, & Collins, 2003). Although Table 2 Endometriosis resources for patients The Endometriosis Association Endometriosis Global Forum Endometriosis Research Center Center for Endometriosis Care National Library of Medicine National Women s Health Information Center National Institute of Child Health and Human Development Mayo Clinic endometriosis.html womenshealth.gov/faq/ endometriosis.cfm Endometriosis.cfm endometriosis/ds00289 further research is needed, laparoscopic surgery with ablation of endometrial lesions decreases pain in mild-tomoderate disease compared to diagnostic laparoscopy, and increases pregnancy rates in patients with endometriosisassociated infertility (Jacobson, Barlow, Garry, & Koninckx, 2001; Jacobson, Barlow, Koninckx, Olive, & Farquhar, 2002). However, it is important to inform patients that endometriosis recurs within 2 years post laparoscopy in 40% to 60% of cases, and complications develop in 1% to 6% of cases (Winkel, 2003). Another surgical procedure, presacral neurectomy, which entails division of the sympathetic nerves from the uterus, may help reduce endometriosis-associated dysmenorrhea and midline abdominal pain (Latthe, Proctor, Farquhar, Johnson, & Khan, 2007). If pain symptoms continue to persist after attempting medical and surgical management, or side effects from medical therapy become intolerable, definitive surgery, which includes hysterectomy with bilateral salpingectomy and oophorectomy, may be considered as a final treatment option in patients with no plans for pregnancy (Jackson & Telner, 2006; Mounsey et al., 2006). Patients should understand that even after definitive surgery, endometriosis may recur in 5% to 15% of cases (Bell & Colledge, as cited in Jackson & Telner). Patients should also seek support groups for counseling in coping with the disease during the healing process (see Table 2). Implications for practice Endometriosis is a lifelong, chronic, progressive disease that requires ongoing, supportive, collaborative management with the patient because pain can recur despite treatment. Understanding that pain management and fertility issues greatly impact the patient s quality of life, the APN must address these needs to reduce pain and prevent 114

7 A.J. Mao & J.K. Anastasi Diagnosis and management of endometriosis infertility by providing the necessary patient education about their disease process, diagnosis, current treatment options, and medication side effects. As APNs play a key role in patient teaching and health promotion to reduce disease progression, it is essential for practitioners to cultivate partnerships with patients, in order to provide effective disease management and optimize treatments aimed at improving quality of life and decreasing the risk for future infertility. Nonspecific, overlapping symptoms of endometriosis with other nongynecologic disorders combined with lack of accurate noninvasive diagnostic tests, and tendency for recurrence of pain symptoms make obtaining a timely, definitive diagnosis and effectively treating chronic pain difficult. This demands more evidence-based clinical research to improve diagnosis and management of endometriosis in the primary care setting. Because the etiology of endometriosis remains unclear with multiple proposed theories, further research is needed to better understand the disease process, causation, and risk factors. Many patients with endometriosis report improvement in pain symptoms from nutritional and integrative therapies such as acupuncture, traditional Chinese medicine, herbal treatments, reflexology, and homeopathy (Kennedy et al., 2005). While this demands more research evidence from randomized controlled trials in endometriosis to support use of integrative therapies in primary care, the practitioner should not exclude them in the pain management process to complement medical treatments. However, the APN should provide information and guidance when selecting such modalities. With a strong understanding of the multidisciplinary, holistic approach to pain management along with medical treatments, the APN in primary care can educate and assist patients in optimizing therapeutic interventions to improve quality of life. It is important to emphasize the importance of complying with treatment regimens, reporting symptom changes or side effects, and maintaining regular follow-up appointments and referrals. This underscores the essential need to develop a collaborative, supportive relationship with the patient in order to facilitate quality of care, adequate pain management, and infertility prevention. Conclusions The APN in primary care will encounter endometriosis, a chronic, progressive medical condition with a multiplicity of presenting symptoms often confused with other differential diagnoses. The common symptoms of chronic pelvic pain, dysmenorrhea, dyspareunia, and infertility can severely impact a woman s sense of well-being and quality of life. Because of its nonspecific symptoms and frequently normal physical examination findings, endometriosis can be difficult to diagnose. If misdiagnosed and left untreated, endometriosis can evolve from small lesions on normal pelvic organs to large ovarian endometriomas and extensive fibrosis with adhesions. This can further lead to significant distortion of the pelvic anatomy and develop into a more severe, deeply infiltrating stage of disease that may affect other organs such as the lungs (Kennedy et al., 2005). Thus, it is imperative to accurately diagnose the disease based on clinical presentation, history, and physical examination in a timely manner within the primary care practice, and offer prompt empirical treatment and necessary referrals, depending on treatment outcomes and future plans for pregnancy. The APN plays an important, pivotal role in health promotion and disease prevention in the primary care setting, not only in providing support and collaboration with the patient to facilitate quality of care, but also in managing effective treatments to reduce pain, improve quality of life, and prevent infiltration of endometriosis and further progression of disease. Supporting Information Additional supporting information may be found in the online version of this article: Figure S1 Endometriosis diagnosis-management algorithm. Please note: Wiley-Blackwell is not responsible for the content or functionality of any supporting materials supplied by the authors. Any queries (other than missing material) should be directed to the corresponding author for the article. References American College of Obstetrics and Gynecology. (1996). Chronic pelvic pain: ACOG technical bulletin no International Journal of Gynecology & Obstetrics, 54, American College of Obstetrics and Gynecology. (2006, January). ACOG education pamphlet APO99: Pelvic pain. Retrieved May 19, 2008, from education/bp099.cfm American Society for Reproductive Medicine. (1997). Revised American Society for Reproductive Medicine classification of endometriosis: Fertility and Sterility, 67, Arruda, M. S., Petta, C. A., Abrao, M. S., & Benetii-Pinto, C. L. (2003). Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Human Reproduction, 18, Brosens, I., Puttemans, P., Campo, R., Gordts, S., & Brosens, J. (2003). Non-invasive methods of diagnosis of endometriosis. Current Opinion in Obstetrics & Gynecology, 15, D Hooghe, T., & Hummelshoj, L. (2006). Multi-disciplinary centres/networks of excellence for endometriosis management and research: A proposal. Human Reproduction, 21,

8 Diagnosis and management of endometriosis A.J. Mao & J.K. Anastasi Eskenazi, B., & Warner, M. L. (1997). Epidemiology of endometriosis. Obstetrics and Gynecology Clinics of North America, 24, Farquhar, C. (2007). Endometriosis. British Medical Journal, 334, Howard, F. (2008). Causes of chronic pelvic pain in women. Retrieved July 29, 2008, from Jackson, B., & Telner, D. E. (2006). Managing the misplaced: Approach to endometriosis. Canadian Family Physician, 52, Jacobson, T. Z., Barlow, D. H., Garry, R., & Koninckx, P. (2001). Laparoscopic surgery for pelvic pain associated with endometriosis. Cochrane Database of Systematic Reviews, (4), CD Jacobson,T.Z.,Barlow,D.H.,Koninckx,P.R.,Olive,D.,&Farquhar,C. (2002). Laparoscopic surgery for subfertility associated with endometriosis. Cochrane Database of Systematic Reviews, (4), CD Kennedy, S., Agneta, B., Chapron, C., D Hooghe, T., Dunselman, G., Greb, R., et al. (2005). ESHRE guideline for the diagnosis and treatment of endometriosis. Human Reproduction, 20, Latthe, P. M., Proctor, M. L., Farquhar, C. M., Johnson, N., & Khan, K. S. (2007). Surgical interruption of pelvic nerve pathways in dysmenorrhea: A systematic review of effectiveness. Acta Obstetricia et Gynecologica Scandinavica, 86(1), Laufer, M. R. (2008). Diagnosis and treatment of endometriosis in adolescents. Retrieved July 29, 2008, from Lowdermilk, D. L., & Perry, S. E. (2004). Maternity and women s health care (8th ed.). St. Louis, MO: Mosby. Lundeberg, T., & Lund, I. (2008). Is there a role for acupuncture in endometriosis pain, or endometrialgia? Acupuncture in Medicine, 26(2), Markle, M. E. (2001). Polycystic ovary syndrome: Implications for the advanced practice nurse in primary care. Journal of the American Academy of Nurse Practitioners, 13, Moore, J., Copley, S., Morris, J., Lindsell, D., Golding, S., & Kennedy, S. (2002). A systematic review of the accuracy of ultrasound in the diagnosis of endometriosis. Ultrasound in Obstetrics & Gynecology, 20, Mounsey, A. L., Wilgus, A., & Slawson, D. C. (2006). Diagnosis and management of endometriosis. American Academy of Family Physicians, 74, Nasir, L., & Bope, E. T. (2004). Management of pelvic pain from dysmenorrhea or endometriosis. Journal of the American Board of Family Practice, 17, S43 S47. Pugsley, Z., & Ballard, K. (2007). Management of endometriosis in general practice: The pathway to diagnosis. British Journal of General Practice, 57, Royal College of Obstetricians and Gynaecologists. (2006, October). The investigation and management of endometriosis. Green-Top Guideline No. 24. Retrieved July 28, 2008, from pdf/endometriosis gt pdf Sangi-Haghpeykar, H., & Poindexter, A. N., III. (1995). Epidemiology of endometriosis among parous women. Obstetrics & Gynecology, 85, Sinaii, N., Cleary, S. D., Ballweg, M. L., Niemann, L. K., & Stratton, P. (2002). High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: A survey analysis. Human Reproduction, 17, Smith, R. P., & Kaunitz, A. M. (2008). Pathogenesis, clinical manifestations, and diagnosis of primary dysmenorrhea in adult women. Retrieved July 29, 2008, from Smith, S., Pfeifer, S. M., & Collins, J. A. (2003). Diagnosis and management of female infertility. Journal of American Medical Association, 290, Velebil, P., Wingo, P. A., Xia, Z., Wilcox, L. S., & Peterson, H. B. (1995). Rate of hospitalization for gynecologic disorders among reproductive-age women in the United States. Obstetrics & Gynecology, 86, Winkel, C. A. (2003). Evaluation and management of women with endometriosis. Obstetrics & Gynecology, 102,

Moneli Golara Consultant Obstetrician and Gynaecologist Barnet Hospital Royal Free NHS Trust

Moneli Golara Consultant Obstetrician and Gynaecologist Barnet Hospital Royal Free NHS Trust Moneli Golara Consultant Obstetrician and Gynaecologist Barnet Hospital Royal Free NHS Trust Endometriosis one of the most common conditions requiring treatment Growth of endometrial like tissue outside

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