The impact of endometriosis

Endometriosis is a chronic condition impacting an estimated 190 million women globally, negatively affecting many aspects of their lives.1,2 Further, research suggests that an estimated 70% of individuals who have been diagnosed with pelvic pain actually have endometriosis.3 Endometriosis is dependent on estrogen and is typically diagnosed during childbearing years.1,2 When endometrial tissue is discovered outside the uterine cavity, a confirmatory diagnosis of endometriosis is made.3 The most common areas outside the uterus for endometrial tissue to grow include the ovaries; fallopian tubes; and the abdominal, rectal, and pelvic cavities.4 In rare instances, endometrial tissue may also be found in the vulva, lungs, brain, and pericardium.4 When endometrial tissue grows outside the uterus, many systems in the body are adversely affected.3 This article describes the potential causes and risk factors of endometriosis; signs and symptoms; diagnostic procedures; treatment options; and related concerns, such as infertility. Nurses must recognize the key signs of endometriosis to provide patients with a voice and assist them in obtaining prompt treatment. Signs and symptoms Signs and symptoms of endometriosis vary by individual but can include chronic pelvic pain, gastrointestinal disturbances, back pain, dyschezia, dyspareunia, and dysmenorrhea.3,4 Often, these symptoms start early in adolescence and are commonly noted between the ages of 25 through 45 years.2 Unfortunately, patients often experience delays in receiving treatment in a timely manner, which may be related to a lack of access to care, a rural location, lack of health insurance, and racial disparities.5 Receiving an official diagnosis of endometriosis is often time-consuming, and patients may experience signs and symptoms for 4 to 12 years before receiving a definitive diagnosis.4,7 In the US, it is reported that 6 out of 10 women who are symptomatic are not aware that they have endometriosis.4,6,7 Another cause for delayed treatment is the belief that pelvic pain is a normal occurrence, and patients are sometimes dismissed and advised that their pain is not a concern.7-9,22 In addition, many studies indicate an implicit bias among physicians and advanced practice clinicians (APCs), who may assume that the patient's symptoms are due to psychological issues rather than a physical condition.9 Endometriosis is the primary reason for infertility in women of childbearing age; thus, the earlier endometriosis is diagnosed and treatment begins, the better the outcome for the patient.4,7,8 Theories and risk factors Different theories and risk factors point to why endometriosis develops.3,8 Research indicates that early menarche (before age 11), menorrhagia lasting longer than 7 days, menstruation cycle length shorter than 27 days, a family history of endometriosis, and nulliparity have been associated with endometriosis.3,8 Although the exact causes of endometriosis are not clear, some potential causes have been theorized. Retrograde menstruation is thought to be a factor in the development of endometriosis2,3,8: The backward flow of blood during menstruation may result in endometrial tissue lodging in the fallopian tubes and pelvic cavity.2,3,6,8 Individuals may also have a genetic predisposition to endometriosis since family history is a risk factor. In addition, a hormonal imbalance between estrogen and progesterone, environmental factors such as toxins and pollutants, and immune system dysfunction all might contribute to endometriosis development.2,8 Because patients often experience delays in treatment for endometriosis, endometrial tissue may build up over time, causing inflammation and placing the immune system in a state of high alert or hypervigilance, stimulating stress hormone activation.2,10 Further, cysts or endometriomas, which are typically located in the ovaries but can also occur in various places in the body such as the pelvis, intestines, and lungs, with adhesions were noted to occur in 17% to 44% of individuals with endometriosis, resulting in an inflammatory response.10 Diagnosis Different methods can be used to determine a diagnosis of endometriosis. Physicians and APCs can incorporate the use of validated questionnaires to assess patients thought to be at high risk for this disorder.11-13 The clinician conducts in-person interviews with the patient and analyzes five symptoms linked to endometriosis: dysmenorrhea, dyspareunia, gastrointestinal pain and other symptoms, urinary tract symptoms with pain, and chronic pelvic pain.14,15 Noting these symptoms is helpful for patients to report ongoing pain, particularly dysmenorrhea.11-13 Research indicates that the self-reporting of dysmenorrhea is highly representative of a confirmatory diagnosis of endometriosis because the two often coexist.12 After validated questionnaires such as the Endometriosis Health Profile are completed, the physician or APC reviews the symptoms noted and their impact on the patient and determines the next step in the treatment plan.11-13 Genetic biomarkers Research has identified various genetic markers and microRNA for their association with endometriosis.16 Although promising, further research is needed before these biomarkers can be used in clinical practice to determine a patient's genetic risk.15 Once this testing becomes available, it will likely shorten the timeline to diagnosis, enhancing patient outcomes.15 Noninvasive testing The patient's symptoms are critical evidence in assessing for endometriosis.7,16 The physician or APC will often request imaging based on the patient's clinical information and symptoms.7,16 A pelvic transvaginal ultrasound is considered the criterion standard of noninvasive testing and the recommended initial imaging to identify the presence of endometriosis.16 A transvaginal ultrasound is also the preferred method to visualize and identify endometrial cysts.16 If the transvaginal ultrasound is inconclusive, an MRI may be performed to assess deep infiltrating endometriosis.17 Endometriosis that has advanced to the pelvic organs and other parts of the body can be visualized via an MRI.16 This imaging can determine the location and depth of endometrial lesions.16 Once endometrial lesions are suspected of having migrated to various parts of the body and surgical intervention is necessary, this noninvasive imaging also assists with the staging of the disease.16 However, not all patients with endometriosis have access to an MRI, and this imaging may be cost-prohibitive.5,16 Invasive procedure After noninvasive diagnostic testing has been completed, a laparoscopy is often recommended.17,18,21 A laparoscopy is an invasive surgical procedure that is performed to assess the presence of endometriosis and ultimately confirm the diagnosis.17 Visible endometrial lesions can be excised and biopsied, and the disease is classified into stages from mild to severe, with photographs and videos taken.17,18 Biopsy with excision of the tissue and lesions can confirm the existence of endometriosis and often validate a patient's report of ongoing pain.9 As with any invasive procedure, there are benefits and risks, which the physician or APC should thoroughly explain to the patient.17,18 Even after being treated for endometriosis, a reported 60% of patients experience ongoing pain. For those who have undergone previous surgery, the lesions often return, causing pain and requiring additional surgery years later.10 Diagnosis of infertility Many patients who are trying to conceive are fearful they will be unable to become pregnant and may experience anxiety and apprehension.20 Typically, endometriosis is discovered at this time of uncertainty.20 An infertility assessment is indicated after 6 months of regular and accurately timed unprotected intercourse for females age 35 or older and after 1 year of regular and accurately timed unprotected intercourse for females under age 35.18,19 Also contributing to infertility is the presence of either endometriomas or adhesions, which are believed to adversely affect the ovarian egg supply due to the loss of ovarian follicles.6,14 When endometriosis is untreated, the severity of the disease is heightened, escalating the risk of infertility.6,14 An estimated 50% of women with infertility are eventually diagnosed with endometriosis. However, even after diagnosis, they may continue to struggle with fertility.6,18 Treatment Pain management The pain associated with endometriosis can be all-encompassing, affecting every aspect of one's life. Some patients report pain so severe that work and enjoyment in life are both compromised.20,22 Those affected are usually advised to take nonsteroidal anti-inflammatory drugs (NSAIDs) for pelvic pain.14,21,23 Patients may experience adverse reactions to NSAID use, including nausea, gastrointestinal issues, and headaches. Although NSAIDs are considered safe, they are not recommended for long-term treatment because of these adverse reactions.4,14,23 Opioids are not typically used for pain management for endometriosis due to their addictive quality and the lack of supportive evidence indicating opioids are beneficial for the pain management of endometriosis.21 Hormonal therapy, which can diminish pain and restrict the growth of abnormal endometrial tissue, is also prescribed for pain management in addition to NSAIDs.4 Hormonal therapy Women experiencing pelvic pain who do not plan on becoming pregnant are typically prescribed hormonal medications as the initial treatment of endometriosis.4,14 The frontline medications suggested are oral contraceptives, such as progestin therapy or an estrogen and progestin combination, and NSAIDs.4,14,21 Hormonal therapy is proposed in the treatment of endometriosis because it works by thinning the uterine lining and decreasing the size of the endometrial lesions.4,14 Adverse reactions of estrogen and progestin include headaches, breast tenderness, bloating, weight gain, vaginal spotting, and changes in the menstrual cycle.4,14 Although not first-line therapies, other hormonal therapies suggested are the levonorgestrel-intrauterine device (LNG-IUD) and the vaginal ring.14,21,23 The LNG-IUD is typically used after surgery and is also known to treat dysmenorrhea by subduing menstrual flow.14,21 The adverse reactions associated with the LNG-IUD include breast tenderness, abdominal cramping, and spotting.14,21 If the patient decides to become pregnant, these treatment methods can easily be discontinued.14,21 Depot medroxyprogesterone acetate is a progestin-only hormonal treatment sometimes suggested for endometriosis if first-line therapies are not effective.14 Gonadotropin-releasing hormone (GnRH) agonists GnRH agonists are another classification of hormonal drugs that are a second-line therapy for endometriosis.14,21,23 These medications initiate a temporary state of menopause by halting the production of estrogen and progestin.23-25 An initial GnRH agonist that might be suggested for the treatment of endometriosis is leuprolide acetate.14 GnRh agonists cause the body to be placed in a state of hypoestrogenism or “pseudo-menopause.” The patient might experience adverse reactions such as flushed skin, hot flashes, palpitations, fatigue, night sweats, anxiety, vaginal dryness, decreased libido, dizziness, headaches, nausea, and anxiety.23-25 Additionally, a serious adverse reaction impacting bone density can arise due to the extremely low levels of estrogen, potentially leading to the development of osteopenia and future osteoporosis.21,24 GnRH agonists are often difficult to tolerate for an extended length of time and are not recommended in patients 18 years or younger.23,24 Counseling patients about GnRH agonists and their potential adverse reactions is essential.24 A critical point to discuss is the importance of not exceeding GnRH agonist medications with adjuvant therapy, such as estrogen and progestin for longer than 12 months, due to the potential loss of bone density—unless there is a specific recommendation by the provider.21,24 Gonadotrophin-releasing hormone antagonists GnRH antagonists are medications that are similar to GnRH agonists but function differently because they suppress pituitary gonadotropin hormone production and create a hypoestrogenic state.14 GnRH antagonists are sometimes prescribed for individuals who experience heavy menstrual bleeding,26,27 and studies suggest that GnRH antagonists can alleviate endometrial pain.14,26,27 This class of medications can be given orally for up to 2 years and is recommended for use in combination with hormonal therapies to compensate for the adverse reactions linked to low levels of estrogen.25-27 Although the adoption of GnRH antagonists is promising, they are still being investigated and are cost-prohibitive at the time of this publication.27 Despite being available in the US, Canada, and parts of Europe, GnRH antagonists are not readily available worldwide.27 Immunotherapy Immunotherapy is a relatively new avenue being studied and is thought to have the potential to alleviate the inflammatory response that occurs with endometriosis.28 Neutrophils and immune cells known as mast cells are found in more significant amounts in endometrial tissue and the abdominal cavity of those with endometriosis.28 Immunotherapy aims to target these immune cells, ultimately preventing endometriosis.28 This method is encouraging, and various immunotherapies have been suggested, including interferon alpha and beta.28 However, immunotherapy is not yet available in clinical practice, and research is ongoing.28,30 Antioxidant therapy It has been proposed that endometriosis may be associated with oxidative stress.29 Studies suggest that antioxidant therapy, particularly with vitamins C and E, has been shown to decrease the symptoms of dysmenorrhea and chronic pelvic pain.29 Alternate therapies Alternate therapies for pain management, such as acupuncture, antioxidant vitamin therapy, green tea, curcumin, and the use of transcutaneous electrical nerve stimulation, are some complementary treatments that should be further explored.23,29,30 Studies suggest acupuncture and transcutaneous electrical nerve stimulation reduce pain, and the inflammatory response is diminished with dietary supplements, although studies for complementary therapies remain ongoing.23,29,30 Quality of life and mental health An estimated 10% to 15% of women of childbearing age and roughly 70% of those with recurrent pelvic pain are estimated to have endometriosis.22 For those whose lives have been altered by this chronic disease, it is essential to recognize that endometriosis affects multiple facets of an individual's life.9,20 Physicians and APCs should consider an extensive surveillance approach that includes early monitoring of initial symptoms of endometriosis along with a mental health assessment.9,20 Living with incessant pain affects many aspects of one's life.9,20,22 Relationships often deteriorate, and many individuals experience social isolation.20 Job performance and attendance at work or school are compromised, ultimately causing anxiety and depression.9,20,22 For individuals living with chronic pain, endometriosis can be debilitating, resulting in a loss of freedom and limitations in participating in various life activities. Daily routines may need to be altered due to the severe symptoms of this disease, and many individuals have reported being unable to lead a normal life.9,20,22 Further, there is a correlation between chronic pain, anxiety, and depression.20 Individuals with endometriosis share that the disease encompasses all aspects of their lives and describe experiencing loneliness; some have experienced suicidal ideation.20 Those diagnosed with endometriosis have a higher rate of social isolation, anhedonia, anxiety, and depression in comparison with those without this disease.20,22 Individuals with endometriosis have also reported feeling unwanted, experiencing shame, and being unable to publicly share their experiences—particularly with pain, menstruation, and infertility—due to the stigma surrounding endometriosis.9 | Endometriosis Foundation of America | www.endofound.org/ | | Endometriosis Foundation of America app | www.endofound.org/a-virtual-support-group-for-endometriosis-theres-an-app-for-that | | NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development: Endometriosis Support | www.nichd.nih.gov/health/topics/endometri/more_information/resources | | Endometriosis.org | https://endometriosis.org/ | | Endometriosis Association | https://endometriosisassn.org/our-work/support/ | | The Endometriosis Foundation | https://www.theendometriosisfoundation.org/supportgroups | Clinicians should encourage patients to speak freely about their experience and promote early intervention with all available information and support services. Worldwide organizations offer an open forum for those interested in sharing their experiences with endometriosis.31,32 Many affected and their families are raising their voices and assisting with research and fundraising efforts to promote endometriosis awareness (see Endometriosis support and information).31,32 Creating an open dialogue and sharing information could normalize the conversation about endometriosis and reduce any related stigma.9,33

Physicians and APCs should evaluate patients reporting pelvic pain and dysmenorrhea using self-reported questionnaires. Although many clinicians use validated questionnaires for patients who are thought to be at high risk for endometriosis, research indicates that these tools are often given to patients only at advanced stages of the disease. Females who are affected should be empowered and armed with the knowledge that normal menstruation should not be extremely painful, and any symptoms of severe pelvic pain should be investigated. Raising awareness of endometriosis and bringing this condition to the forefront would be a significant step for those living with this chronic disease. Encouraging one to speak their truth about their lived experience is beneficial for oneself and all. Sharing of information will assist those who have yet to receive a diagnosis and those living with this chronic condition. Elevating awareness of the signs and symptoms contributes to an earlier diagnosis and initiation of treatment. Highlighting the importance of early detection and treatment promotes physical health and mental well-being, ultimately improving the quality of life for females across the world.

endometrial cyst; endometriosis; dyschezia; dyspareunia; dysmenorrhea; hormonal therapy; infertility