MYADVO ADVOCACY GUIDE
ENDOMETRIOSIS 101
Last updated on April 1, 2024
Words by the MyAdvo Team, Medically reviewed by:
Dr. Elizabeth Poynor
MD, PhD
Dr. Navya Mysore
MDCM, CCFP​
What is endometriosis?
Endometriosis is a condition where tissue–a group of cells working together to perform a specific function–similar to the uterine lining grows outside the uterus where it shouldn’t be.
This tissue often grows on or around reproductive organs in the pelvis or abdomen, including the ovaries, fallopian tubes, and the lining of the pelvic cavity. However, it has also been found on nearly every organ in the body. It’s less common, but it can also grow in places like the bladder, ureters, kidneys, gastrointestinal tract, soft tissues, ligaments, nervous system, and chest.
Even though the tissue is not in the right place, it acts as it would in the uterus: thickening, breaking down, and bleeding when hormones change. But unlike menstrual blood, which leaves the body, this blood has nowhere to go. This can cause inflammation, pain, scarring, and bands of fibrous tissue (adhesions) that can bind together pelvic tissues and organs.
Endometriosis is categorized into 4 stages based on severity:
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(I) Minimal: This initial stage is characterized by the presence of a few small areas of the body are impacted, with patches of tissue called “implants” or “lesions” on the pelvic organs or pelvic/abdominal lining. At this stage, there’s little to no scar tissue.
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(II) Mild: In this second stage, more areas are affected. These implants are also deeper in the tissue, and scar tissue may have begun forming.
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(III) Moderate: The third stage is marked by numerous implants deep in the tissue. This may be accompanied by small cysts on one or both ovaries, and thick bands of scar tissue called adhesions.
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(IV) Severe: The most advanced stage is identified by many affected areas, with implants deep in the tissue and extensive, thick adhesions in the abdomen. There are also large cysts on one or both ovaries.
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There are 4 main types of endometriosis:
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Superficial peritoneal endometriosis. This type occurs when endometrial tissue attaches to the peritoneum, which is the thin lining of your abdomen and pelvis that also covers most of the organs in these areas. This is the least severe form.
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Endometriomas. These are dark, fluid-filled cysts (also called “chocolate cysts”) that vary in size and location but are most commonly found in the ovaries.
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Deeply infiltrating endometriosis (DIE). This type is defined by the invasion of endometrial tissue into organs both within and outside of the pelvic cavity, including the ovaries, rectum, bladder, and bowels. In rare cases, scar tissue can cause organs to stick to one another, a condition called “frozen pelvis.”
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Abdominal wall endometriosis. In some cases, endometrial tissue can grow on the abdominal wall, sometimes attaching to a previous surgical incision (examples: a previous C-section).
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Understanding endometriosis is your first step toward empowerment. Dive deep into credible resources to educate yourself on this complex condition. Websites like Endofound.org and TheEndo.co, for example, offer a wealth of credible information tailored for patients. Knowledge is power, and the more you know, the better you can advocate for yourself.
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Prepare for doctor appointments with confidence. Approach your healthcare provider with a set of prepared questions to assess their familiarity and experience with endometriosis, such as the number of endometriosis patients they have treated, their diagnostic processes, and treatment approaches. This not only gauges their expertise but also opens a dialogue for a collaborative treatment plan
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Who gets endometriosis?
Endometriosis can affect anyone who menstruates, and typically occurs during the reproductive years (from first period through menopause). An estimated 10% of people with a uterus are affected by endometriosis globally. Although rare, endometriosis has been found in individuals who do not or no longer menstruate, such as after hysterectomy.
1 in 10
PEOPLE WITH A UTERUS HAVE ENDOMETRIOSIS WORLDWIDE
What are the symptoms of endometriosis?
Symptoms can vary from person to person and some people may have no symptoms at all.
Common symptoms include:
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Heavy bleeding
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Severe cramps
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Chronic lower back and pelvic pain
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Pain/bleeding during or after intercourse
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Spotting or bleeding between periods
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Chronic abdominal pain
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Painful bowel movements or urination during your period and in between your period
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Difficulty getting pregnant
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Slightly higher incidence of early miscarriage
Other symptoms that occur more commonly before or during a period include fatigue, diarrhea, constipation, bloating or nausea.
Although these symptoms can happen at any time, they often become more severe before or during menstruation. However, the intensity of pain does not indicate the severity of endometriosis. Someone with mild endometriosis can experience severe pain, while someone with advanced endometriosis could have little or none. Symptoms can also depend on the location of endometriosis and which organs are involved. Because these can overlap with other conditions, endometriosis is particularly challenging to diagnose based on symptoms alone.
MYADVO TIPS
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Listen to your body; your pain is valid. When it comes to periods, severe pain is NOT okay. If you find yourself struggling with severe cramps, heavy bleeding, or any of the symptoms mentioned, it's essential to take them seriously no matter if you’ve been told something else, or that it’s “just in your head.” You are not overreacting. Remember, you know your body best.
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Document everything. Take control by tracking your symptoms–in a journal, in your phone, or using a fertility or period tracker’s comments sections. This information is a crucial starting point for your healthcare provider to identify patterns and assess whether your symptoms could be caused by a different condition, or possibly endometriosis. Remember, even if your pain is in places that seem to suggest issues in other parts of the body (like your GI system, or lower back), don't discount endometriosis just yet.
How do you know if you have endometriosis?
Diagnosing endometriosis can involve a lot of detective work between you and your health care provider. In addition to a pelvic exam, tests such as imaging (ultrasound and MRI) can help to gather information and rule out other possible conditions. Imaging can spot bigger issues like endometriosis-related cysts (endometriomas), but often will not detect smaller lesions.
Currently, the only way to officially confirm a diagnosis of endometriosis is with a surgical procedure called laparoscopy. This is a type of minimally invasive surgery in which your surgeon inserts a thin tube with a camera and light through a small incision in your abdomen. This way, they can take a look inside the pelvic cavity and examine organs for signs of endometriosis, and biopsy any tissue they find.
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Understand your diagnostic options thoroughly. Educate yourself on diagnostic options, and ask your doctor about next steps for testing to evaluate your symptoms. Recognize the limitations and capabilities of non-invasive tests like ultrasounds and MRIs, and understand that while they can identify larger issues, they might not detect all manifestations of endometriosis. Know when it's time to get a second option: if your doctor has ruled out other possible causes of your symptoms, and endometriosis remains a possibility, it is not too soon to seek a second opinion or an endometriosis specialist for a more comprehensive evaluation. Consider consulting with an endometriosis excision specialist in case surgery is needed.
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Prepare for meaningful conversations with your healthcare provider. Before your appointment, compile a list of questions that can help you assess your healthcare provider’s experience and approach to diagnosing endometriosis. Ask about their familiarity with the latest endometriosis research and treatment options, and their endometriosis specialist referrals should you need a more comprehensive evaluation or to consider surgery. This can help ensure that your healthcare provider is well-equipped to guide you through the diagnosis and treatment journey.
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Be wary of dismissive attitudes. Statements that downplay your pain, attribute symptoms solely to stress, or outright deny the possibility of endometriosis without thorough investigation are red flags. Remember, a healthcare provider that definitively rules out endometriosis despite symptoms consistent with the condition, without recommending or proceeding with a laparoscopy warrants a second opinion from an endometriosis specialist. A laparoscopy is currently the gold standard for diagnosing endometriosis.
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Consider an endometriosis excision specialist. Not all gynecologists are endometriosis specialists. If you feel your symptoms and concerns are not being adequately addressed or if surgery becomes a necessary step for diagnosis or treatment, seeking out a specialist who performs endometriosis excision is crucial . These specialists have specific training and experience in surgically removing endometriosis lesions, including the most complex of cases, and are equipped to handle any type of endometriosis they may uncover during laparoscopy. This technical expertise can lead to better outcomes for pain relief and fertility.
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Are there risk factors?
Risk factors include: family history, abnormal or heavy bleeding, starting your period at an early age, a history of infertility, and multiple pregnancies and births. The cause of endometriosis is unknown.
MYADVO TIPS
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Start conversations within your family. 7X is the amount of increased genetic risk for sisters and mother/daughter relationships. If endometriosis is suspected or you're curious about your own risk factors, consider having open discussions with female relatives such as your mother, sisters, aunts, and grandmothers. Ask if they have experienced symptoms similar to those associated with endometriosis or if they have been diagnosed with the condition. This can help you understand if there is a family history.
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Explore reproductive health histories. Another valuable conversation involves discussing reproductive histories with your family members, particularly focusing on any challenges they may have faced in conceiving. This can include questions about the age they first got their period, the nature of their menstrual cycles (e.g., heavy or abnormal bleeding), and their pregnancy journeys. Understanding these aspects can provide insights into potential hereditary patterns that could affect your health.
How is endometriosis treated?
Treatment for endometriosis is personalized; there’s no one-size-fits-all treatment option.
Some options include:
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Over the counter or prescription pain medication
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Hormonal therapy (birth control pills, IUDs, gonadotropin-releasing hormone (GnRH) agonists and antagonists, progestin therapy)
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Surgeries such as ablation (destroying the tissue), excision (cutting and removing the tissue), and hysterectomy (removal of the uterus)
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Excision surgery is considered the gold standard of endometriosis treatment. But unfortunately, none of the available treatment options, including hysterectomy, is considered a cure. Even with surgical interventions, lesions can return. One study showed that almost 1/3 of people require one or more additional surgeries within 10 years of their first excision surgery.
You and your healthcare provider can discuss your options and decide what makes the most sense for you. Communication is an essential aspect of care—if you feel as though your goals or needs aren’t being considered, it might be time to switch healthcare providers.
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MYADVO TIPS
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Prepare specific questions for your doctor about treatment options. If your doctor suspects endometriosis, prepare questions about treatment options and next steps. Identify what is important to you, what your goals are in managing your symptoms/ condition, and any concerns you may have about treatment. Ask your doctor to map out a treatment timeline, including how long to monitor your symptoms before considering an alternative approach or second opinion. Talk through what that next alternative approach would be, or which specialist they may refer you to. Don't wait until your symptoms are debilitating to have a treatment plan in place!
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Consider recording medical appointments. Record appointments by respectfully asking your doctor if it's okay with them. This is perfectly legal! Recording will help you to better remember their insights and recommendations, what next steps look like after the appointment, as well as the questions you want to ask.
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Stay open to second opinions. Stay open to second opinions. Even if this is your OBGYN of 10+ years and you trust them, endometriosis is a highly complex condition that is often best handled by a specialist.
What complications can occur with endometriosis?
The main complication of endometriosis is difficulty getting pregnant. In fact, about 50% of women experiencing infertility have endometriosis. In some cases, endometriosis can directly obstruct reproductive organs like the fallopian tubes. It can also indirectly affect fertility by damaging the sperm or egg​​. Many people with mild-to-moderate endometriosis are still able to conceive and carry to term. Additional complications include mental health issues, financial complications, depending on a patients’ insurance, and a difficult quality of life.
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Inform yourself about fertility preservation and assisted reproductive technologies. Regardless of your current family planning intentions, understanding the full spectrum of fertility options is empowering. This includes learning about egg or embryo freezing, Intrauterine Insemination (IUI), In Vitro Fertilization (IVF), and surrogacy among other techniques. Having this knowledge at hand equips you to make decisions that align with your future desires and circumstances. Remember, planning for the future starts today. Decisions regarding fertility can seem distant, especially if you're not currently trying to conceive. However, understanding and considering your options early on provides you with the widest range of choices later. It's about giving your future self the flexibility and freedom to make decisions that reflect your desires and circumstances at that time.
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Seek expertise from a Reproductive Endocrinologist. If you are considering pregnancy now or in the future, consulting with a Reproductive Endocrinologist who has experience with endometriosis can be invaluable. These specialists can offer tailored advice and treatment plans that consider the impact of endometriosis on fertility, enhancing your chances of conceiving and sustaining a pregnancy.
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Organize and understand your medical records. Before consulting a new healthcare provider or seeking a second opinion, ensure you have access to your complete medical history. This may involve requesting the transfer of records from your current physician's office or accessing them through a patient portal. Familiarize yourself with the details of your medical history, as this information is crucial for any specialist to understand your case fully and provide the most appropriate advice or treatment. Keeping a personal copy of your medical records, including any diagnostic tests, treatment plans, and surgical reports, puts you in a stronger position to manage your health proactively. It ensures you're prepared to discuss your history in detail with any new healthcare provider and make informed decisions based on your comprehensive medical background.
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Frequently Asked Questions
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Can endometriosis be cured? Currently, there is no cure for endometriosis, but treatments can help manage symptoms.
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Does endometriosis affect fertility? Yes, endometriosis can affect fertility, but many can still conceive and carry to term.
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Is endometriosis related to cancer? Endometriosis itself is a benign (non-cancerous) condition. However, research suggests that women with endometriosis may have a slightly increased risk of certain types of cancer, including ovarian cancer. It's important to discuss these risks with your healthcare provider and undergo regular check-ups.
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What are my options if pain management doesn't work? If the approaches you’ve tried aren’t working, make an appointment with your healthcare provider to determine what other options are available. Consider seeking a second opinion from an endometriosis specialist.
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Does pregnancy impact/cure endometriosis? Pregnancy does not cure endometriosis. For some women, the hormonal rollercoaster of pregnancy can offer some relief from symptoms but it’s more like hitting the pause button than a permanent “off” switch. Once you are no longer pregnant, your symptoms can start to slowly return into the postpartum period and onwards.
Why MyAdvo Cares
Our mission at MyAdvo is to empower women to advocate for their health. We are committed to providing reliable, compassionate guidance and helping you navigate your condition with resources, support, and a community that understands. Remember, you are an integral part of your care team. Taking an active role in your treatment planning, staying informed, and maintaining open lines of communication with your healthcare provider are key to managing endometriosis. Your well-being is paramount, and ensuring your treatment plan reflects your needs, preferences, and lifestyle is essential for your quality of life.
References
1. Mayo Clinic. Endometriosis - Symptoms and Causes. Mayo Clinic. Published July 24, 2018. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656. 2. Chamié LP, Ribeiro DMFR, Tiferes DA, Macedo Neto AC de, Serafini PC. Atypical Sites of Deeply Infiltrative Endometriosis: Clinical Characteristics and Imaging Findings. RadioGraphics. 2018;38(1):309-328. 3. Lee HJ, Park YM, Jee BC, Kim YB, Suh CS. Various anatomic locations of surgically proven endometriosis: A single-center experience. Obstet Gynecol Sci. 2015;58(1):53. 4. WebMD Editorial Contributors. Endometriosis. WebMD. Published November 14, 2016. https://www.webmd.com/women/endometriosis/endometriosis-causes-symptoms-treatment. 5. Giudice LC, Horne AW, Missmer SA. Time for global health policy and research leaders to prioritize endometriosis. Nat Commun. 2023;14(1):8028. 6. Peterson CM, Johnstone EB, Hammoud AO, et al. Risk factors associated with endometriosis: importance of study population for characterizing disease in the ENDO Study. Am J Obstet Gynecol. 2013;208(6):451.e1-451.e11. 7. What are the risk factors for endometriosis? https://www.nichd.nih.gov/. Published January 28, 2022. https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/at-risk. 8. MedlinePlus. Endometriosis. Medlineplus.gov. Published 2019. https://medlineplus.gov/endometriosis.html. 9. Roman H, Chanavaz-Lacheray I, Hennetier C, et al. Long-term risk of repeated surgeries in women managed for endometriosis: a 1,092 patient-series. Fertil Steril. 2023;120(4):870-879. 10. Endometriosis. www.acog.org. Published February 2021. https://www.acog.org/womens-health/faqs/endometriosis.
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Updated April 1st, 2024.