ENDOMETRIOSIS
FOR
HEALTH CARE PROVIDERS
68% of individuals with
endometriosis were initially
misdiagnosed with
another condition [1].
DOES YOUR PATIENT HAVE ENDOMETRIOSIS?
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Endometriosis, a chronic disease in which endometrial-like tissue grows outside of the uterine cavity, has a delay in diagnosis ranging from 6.7 years in Norway to 11.7 years in the USA [2]. Surveys show that endometriosis patients need an average of 10 appointments with their general practitioners to receive a referral to a specialist.[3] Individuals with endometriosis have also reported that they often feel that health-care providers lack knowledge in endometriosis [3].
Endometriosis affects more than 200 million people worldwide and can lead to severe symptoms impacting reproductive health. Early diagnosis of endometriosis and early intervention are the best prevention of the exacerbation of the disease. The key to earlier diagnosis, avoiding unnecessary pain, distress and possible disease progression, is awareness and knowledge of endometriosis among health professionals.
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SIGNS AND SYMPTOMS OF ENDOMETRIOSIS
From a 651 patient online survey, endometriosis
signs and symptoms [4]:
TYPES OF ENDOMETRIOSIS
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Pelvic endometriosis: superficial or deeply growing endometrial-like tissue lesions on the peritoneal lining, ovaries, fallopian tubes, bowels, or urinary tract.
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Extra-pelvic endometriosis: endometrial-like tissue lesions along the diaphragm, lungs/pleural cavity, and even central nervous system.
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Copyright 2019 by Mayo Clinic
Harvard Health Publishing. (2020, June 17). Endometriosis.
STAGES OF ENDOMETRIOSIS
There are four stages of endometriosis: I, II, III, and IV. They are determined based on the point scores and correspond to minimal, mild, moderate and severe endometriosis. Pain level is independent from the stage of the disease.
RISK FACTORS ​
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Discussing risk factors for endometriosis is useful in early screening, detection, and prevention of the disease.
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The following factors are associated with increased risk of endometriosis:
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Infertility with history of dysmenorrhea,
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family history of endometriosis,
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premenstrual spotting or heavy menses,
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fatigue,
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diarrhea;
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alcohol use [5].
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Earlier age at menarche (<12 years old),
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shorter menstrual cycle (<26 days);
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taller height [6].
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Women with an abnormal uterus [7].
ENDOMETRIOSIS MYTHS AND FACTS
Myth #1: It’s normal to be in this much pain during periods and the pain can’t be that bad.
Fact: Pelvic pain, painful periods and pain during sexual intercourse are the key signs of endometriosis.
Myth #3: The symptoms are all in their head.
Fact: Since the average delay in diagnosis is of 8 or more years, it means that the patients' levels of pain and other symptoms are not being taken seriously.
Copyright The Healthline Editorial Team
Myth #5: Endometriosis is just a really heavy period.
Fact: Common symptoms include heavy menses, chronic pelvic pain, pain with sex/bowel movements/urination, infertility, and fatigue.
Myth #7: Your symptoms signal how serious it is.
Fact: Some patients who would be classified as “severe” by the ASRM experience little pain but do not get pregnant. Others, with only superficial lesions and minor adhesions, experience severe pain and a poor quality of life.
Myth #2: Endometriosis can be diagnosed with a simple exam.
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Fact: A presumptive diagnosis based on one’s symptoms, health history, and physical exams can be given clinically but endometriosis requires tissue biopsy to truly diagnose.
Copyright by Harvard Health
Myth #4: No one with endometriosis can get pregnant.
Fact: Patients with endometriosis can conceive spontaneously and some may struggle to achieve pregnancy.
Myth #6: Hysterectomy is a guaranteed cure.
Fact: There’s no cure, but symptoms can be managed. Removal of the uterus and/or ovaries can decrease the likelihood of endometriosis coming back but the disease MUST also be removed. Unfortunately, there is no cure for endometriosis.
Copyright by What causes endometriosis? (2019, October 30)
Copyright by self.com
Myth #9: Endometriosis-related pelvic pain only happens during a woman’s period.
Fact: Endometriosis patients experience pelvic pain chronically, including during and after sex. Inadequately treated symptoms may lead to chronic daily pain.
Myth #8: Pregnancy is a cure to endometriosis.
Fact: Pregnancy may momentarily relieve symptoms but it is not a cure and endometriosis never goes away on its own.
Suspecting endometriosis?
Goal 1: Learn communication techniques that increase the accuracy and specificity of patient self-report about endometriosis.
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When learning about a patient’s reproductive health, it is important to be aware of the fact a patient may be anxious about this topic. Why may a patient feel anxious talking about endometriosis?
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Patients may feel embarrassed, being judged, not comfortable and confident to talk about their reproductive health.
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Physicians may not be careful about how they approach endometriosis.
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Suggestions to decrease a patient’s anxiety:
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Show empathy and listen intently. Talking about one’s reproductive health is putting oneself in a vulnerable position. Be empathetic to their situation by maintaining eye contact and proper body language such as slightly leaning toward the patient to show that you are listening attentively.
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Ask close-ended questions because open-ended questions tend to increase anxiety and discomfort. Examples of closed-ended questions: “Are you currently sexually active? How many partners now? In past year? In life?
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Offer response choices. Examples: “How often do you experience pain during your period?” - “Once per day, twice per day, more than twice per day, throughout the day”.
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Normalize the patient’s situation by using universality statements. For example, you may state that “ Many patients with endometriosis notice they find it difficult to talk about their concerns of getting pregnant.”
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Use transparency to establish relevance to care. To demonstrate transparency, explain why you are asking certain questions. For example “I need to ask you some very specific questions about your pelvic pain in order to better understand your current problem.” Some questions may require you to ask for permission. For instance “Would it be alright with you if I asked what menstrual sanitation products you use?”. Nonetheless, let the patient know they have the option of not answering a question if it makes them feel uncomfortable.
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Offer further help. If you suspect that the patient may have endometriosis, suggest to see endometriosis specialist.
Copyright by The Healthline Editorial Team. Birth control pills: Types, effectiveness, and more.
Goal 2: Apply basic, primary screening protocol for assessing endometriosis
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Endometriosis Foundation of America recommends the following primary screening questions to a female who has reached the age of menstruation. In the case she responds "yes" to two or more questions, follow up assessment is encouraged [9].
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In the past have you:
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1. Experienced so much pain around your periods that you are unable to attend school, work, or social events?
2. Experienced very heavy bleeding that lasts for more than the first two days of your period?
3. Experienced recurring pelvic pain (pain in your lower belly) any time during the month when you do NOT have your period, which prevents you from participating in daily activities or causes you to take medication to relieve the pain?
Goal 3: Avoid tunnel visioning in endometriosis
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Many reproductive diseases have common signs of endometriosis. Thus, when a doctor suspects that a woman may have endometriosis it is important to consider asking other questions that may help a health care provider suspect other potential diseases.
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Primary screening Questions
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The following set of screening questions are recommended if you suspect your patient may have endometriosis.
Do you experience any of the following?
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Chronic pelvic pain
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Pelvic pain that gets worse during and/or after sex or a pelvic exam
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Abdominopelvic pain apart from menses
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Abdominopelvic pain which prevents you from participating in daily activities
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Chronically heavy or long periods
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Infertility or pregnancy loss
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Bowel or urinary disorders; may worsen with periods
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Painful sexual activity, particularly with penetration
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Significant lower back pain, especially with menses
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Allergies, migraines or fatigue that tends to worsen around periods
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Crippling menstrual pain
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Catamenial pneumothorax (lung endometriosis)
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Other questions that a healthcare provider should ask:
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When do you experience pain (e.g. during your period, sexual intercourse, etc.)?
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When does the pelvic pain start (e.g. before, during, after period)?
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How long does the pain last for?
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Where is the pain located?
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Does your pain move somewhere?
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On a scale of 1 to 10 (10 being the most pain), how would you rate your pain?
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What is your bleeding like (e.g. (heavy, irregular)?
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Do you experience any other pelvic discomfort? (e.g. constipation, bloating, nausea)
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Do not delay referring your patient to an endometriosis specialist if you suspect endometriosis.
TREATMENT: OPTIONS, PURPOSE, ADVANTAGES, DISADVANTAGES
Treatment
Combined oral contraceptives
Note: providers should prescribe OCs in a continuous fashion (i.e. patch, ring, progesterone pills, deproprivera).
Purpose
To reduce the volume of menstrual flow and/or decrease frequency of menses
Advantages
Prevents unwanted pregnancy and confers noncontraceptive benefits, including treatment of menstrual cycle irregularity, heavy menstrual bleeding, premenstrual syndrome, perimenopausal vasomotor symptoms, and acne or hirsutism [10].
Disadvantages:
The long-term efficacy as a treatment for endometriosis lacks clinical evidence. There is even some data supporting potential adverse effects on the progression of the disease [10].
Treatment
Pain killers (e.g. Non-Steroidal Anti-Inflammatory drugs)
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Purpose
To reduce pain and inflammation.
Advantages
Eases endometriosis-associated pain [11].
Disadvantages
May increase the risk of heart attack, stroke, stomach or intestinal bleeding [12].
Treatment
Progesterone Intrauterine Device (IUD)
Purpose:
To prevent and treat heavy menstrual periods.
Advantages:
Reduces menstrual bleeding and cramps [11].
Disadvantages:
May affect mood, appetite, needs to be inserted by a healthcare provider, mild irritation for the first few months [13].
Copyright by University of Michan UHS
Treatment
Gonadotropin-releasing hormone (GnRH) therapy
Purpose
To stop the production of certain hormones to prevent ovulation and menstruation.
Advantage
Reduces menstrual bleeding and hormonally-related pain [14]
Disadvantage
Reduce fertility during treatment, insomnia, decreased libido, headaches, mood swings, vaginal dryness, decreased breast size, increased breast size, acne, muscle pains, dizziness. Some patients report long term memory issues even after discontinuation [15].
Treatment
GnRh antagonist elagolix NR.
Purpose
To reduce endometriosis associated pain
Advantage
Associated with few minor side effects and reduction of endometriosis-associated pain [16].
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Disadvantage
Side effects are similar to those of GnRH antagonists as above. All risks and side effects may not yet be known, as it is a new drug [16].
Treatment
Hysterectomy
Purpose
To potentially help alleviate intolerable symptoms of the disease.
Advantage
It eases abnormal bleeding.
Disadvantage
Hysterectomy alone does not cure endometriosis.
Treatment
Laparoscopy with ablation or excision.
Note: it is important to refer the patient to a surgeon who has a specialized training to fully remove the disease.
Purpose
To diagnose endometriosis and remove the lesions
Advantage
Only a small incision is required to confirm diagnosis and treatment can be carried out at the same time [17].
Disadvantage
Expensive equipment involved in performing endometriosis means that not all hospital operating rooms can afford to offer laparoscopy (not commonly an issue in first world nations). Also, laparoscopy requires skilled surgeons; gynocologists do not qualify in terms of expertise to fully treat the disease [18].
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References
[1] World Statistics World statistics. Endometriosis World.
https://endometriosisworld.weebly.com/world-statistics.html
[2] Management of endometriosis in general practice: The pathway to diagnosis.
PubMed Central (PMC). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078174/
[3] [4] EndoStats - Endometriosis Awareness. https://www.endostats.com/
[5] Evaluation of Risk Factors Associated with Endometriosis in Infertile Women. Ashrafi,
Sadatmahalleh, Akhoond, & Talebi
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4845520/
[6] Endometriosis: Epidemiology, Diagnosis and Clinical Management. Parasar, Ozcan, &
Terry https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737931/
[7] Endometriosis. https://www.hopkinsmedicine.org/health/conditions-and-
diseases/endometriosis
[8] Endometriosis and physical exercises: a systematic review. Bonocher, Montenegro,
Rosa E Silva, Ferriani, & Meola https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3895811
[9] Endometriosis Foundation Of America. EndoFound.
https://www.endofound.org/member_files/editor_files/resource_materials/Endometriosis
_Screening_Tool.pdf
[10] Weisberg, E., & Fraser, I. S. (2015). Contraception and endometriosis: challenges, efficacy, and therapeutic importance. Open access journal of contraception, 6, 105–115. https://doi.org/10.2147/OAJC.S56400
[11] Institute for Quality and Efficiency in Health Care (IQWiG); 2006-. Treatment options for endometriosis. 2008 Feb 25 [Updated 2017 Oct 19].
[12] Proctor, M., & Farquhar, C. (2006). Diagnosis and management of dysmenorrhoea. BMJ (Clinical research ed.), 332(7550), 1134–1138. https://doi.org/10.1136/bmj.332.7550.1134
[13] Dhamangaonkar, P. C., Anuradha, K., & Saxena, A. (2015). Levonorgestrel intrauterine system (Mirena): An emerging tool for conservative treatment of abnormal uterine bleeding. Journal of mid-life health, 6(1), 26–30. https://doi.org/10.4103/0976-7800.153615
[14] Rafique, S., & Decherney, A. H. (2017). Medical Management of Endometriosis. Clinical obstetrics and gynecology, 60(3), 485–496. https://doi.org/10.1097/GRF.0000000000000292
[15] Magon N. (2011). Gonadotropin releasing hormone agonists: Expanding vistas. Indian journal of endocrinology and metabolism, 15(4), 261–267. https://doi.org/10.4103/2230-8210.85575
[16] SÅ‚opieÅ„, R., & MÄ™czekalski, B. (2016). Aromatase inhibitors in the treatment of endometriosis. Przeglad menopauzalny = Menopause review, 15(1), 43–47. https://doi.org/10.5114/pm.2016.58773
[17] Farquhar C. (2007). Endometriosis. BMJ (Clinical research ed.), 334(7587), 249–253. https://doi.org/10.1136/bmj.39073.736829.BE
[18] Zanelotti, A., & Decherney, A. H. (2017). Surgery and Endometriosis. Clinical obstetrics and gynecology, 60(3), 477–484. https://doi.org/10.1097/GRF.0000000000000291
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Copyright 2014 by Blausen