Signs and Symptoms of Endometriosis
Some women with endometriosis experience severe pelvic pain that can interfere with everyday activities such as bowel movements, urination, and sexual intercourse, and can worsen during menstruation. The first sign or symptom for other women is difficulty getting pregnant.
Tamer Seckin, MD, an endometriosis specialist and the author of The Doctor Will See You Now: Recognizing and Treating Endometriosis, writes that your pain may relate to these areas:
- Cramping and intense pain with menstruation that does not respond to nonsteroidal anti-inflammatory medications (NSAIDs) or birth control pills. Think intense, throbbing contractions. Or sudden, sharp, stabbing pains that may leave you breathless. Shireen Hand, a blogger for Endometriosis News, describes it as an “electric shock.” It may start before menstruation and not let up for several days. Some women refer to it as “killer cramps.”
- A dull, throbbing pain around the time of ovulation.
- GI distress, including bloating, gas, and cramps, sometimes accompanied by diarrhea and constipation. Symptoms are worse around menstruation.
- Pain with sexual activity or orgasm. Hand writes that it feels like sandpaper, followed by sharp pains that radiate toward the abdomen.
- Painful bowel movements or urination due to irritated tissue.
- Neuropathy because of swelling and scarring of tissue. This may cause sciatica (a sharp, burning, radiating pain down your leg, inner thigh, or back) that can make walking or even crossing your legs uncomfortable.
Causes and Risk Factors of Endometriosis
- Genetics Endometriosis runs in families. Your risk is higher if one or more relatives have the condition.
- Hormones Excess estrogen or dysregulation of the hormone stimulates growth of endometriotic implants.
- Menstrual period problems Retrograde menstrual flow, or backward period flow, in which some of the tissue shed during a period flows backward through the fallopian tubes and into the pelvis is associated with endometriosis. On the other hand, most women experience this, and in a majority of cases, it doesn’t lead to endometriosis.
- Low prenatal testosterone A lack of testosterone in utero may put some women at higher risk for developing endometriosis.
- Starting your menstrual period at an early age
- Short monthly menstrual cycles (less than 27 days)
- Heavy menstrual periods that last more than seven days
- If you have never given birth
How Is Endometriosis Diagnosed?
Early diagnosis and treatment are especially important because untreated disease will not go away. Without comprehensive treatment, endometriosis can cause chronic pain as well as scar tissue and infertility.
RELATED: Unrecognized Endometriosis: Despite 40 Years of Severe Pain Misdiagnosed as IBS, This Woman Didn’t Give Up
Learn More About Diagnosing Endometriosis: Tests and Screenings, Early Diagnosis, and Your Doctors
According to the classification system established by the American Society for Reproductive Medicine, there are four stages of endometriosis. Stage 1 is minimal, stage 2 is mild, stage 3 is moderate, and stage 4 is severe.
Learn More About the Types and Stages of Endometriosis
Prognosis of Endometriosis
While endometriosis cannot be totally eradicated, patients can find a significant reduction of painful symptoms — and possibly even complete relief — through traditional and nontraditional treatments as well as diet and lifestyle modifications.
Duration of Endometriosis
Currently, there’s no cure for endometriosis, but catching it early and fully excising the disease will likely prevent advanced, deeply infiltrative endometriosis.
Treatment Options and Medications for Endometriosis
If you suspect you have endometriosis, it’s critical that you find an endometriosis specialist. Ask around. If you don't know anyone living with the condition, look for referrals from other women with endometriosis in online forums or patient support groups such as those at Endometriosis.org and Endo-resolved.
Learn More About How to Find an Endometriosis Specialist
Among other factors, appropriate treatments depend on age, the severity of symptoms, and if or when pregnancy may be desired. Don’t delay talking to your doctor about pelvic or lower abdominal pain or bad periods. You don’t have to endure these symptoms, and getting treated can help improve your overall health and quality of life.
While the disease cannot be totally eradicated, medication is typically the first option for reducing symptoms. Medication may include the following:
- NSAIDs, to help relieve pain
- Hormonal birth control
- Hormone therapy
- Gonadotropin-releasing hormone agonist (GnRH-a) therapy, which lowers estrogen levels and prevents menstruation (your period and your ability to get pregnant return once you stop taking this medication)
Alternative and Complementary Therapies
Complementary treatments such as stress management, acupuncture, and diet changes can help alleviate endometriosis symptoms.
- Eating lots of fruits and veggies has been shown to reduce the risk of developing endometriosis. Fatty meats, full fat dairy, caffeine, and alcohol can all increase your risk, so limit or avoid these foods.
- Acupuncture can reduce pain from endometriosis and blood levels of CA-125, a protein associated with the disease.
- Exercise may be the last thing you want to do when experiencing pelvic pain, but some research suggests that it can help you manage symptoms and provide pain relief.
- Biofeedback is an alternative therapy that teaches you how to reframe your response to pain. Find a trained practitioner at the Biofeedback Certification International Alliance or the Association for Applied Psychophysiology and Biofeedback.
- Studies suggest that herbal extracts such as curcumin, puerarin, resveratrol, epigallocatechin-3-gallate (EGCG), and ginsenoside Rg3 may help reduce endometriosis lesions.It’s vital that you discuss any herbal supplements with your doctor, to avoid any interactions with other medications you’re taking.
- Marijuana, now legal in many states, has shown the potential to reduce pain, nausea, and vomiting, and to improve sleep.
Learn More About Treatment for Endometriosis: Medication, Alternative and Complementary Therapies, Surgery Options, and More
Prevention of Endometriosis
- Consider using hormonal birth control such as pills, patches, or rings with lower doses of estrogen.
- Exercise more than four hours a week. Regular exercise and a lower amount of body fat help decrease the amount of estrogen circulating through the body.
- Alcohol raises estrogen levels, so limit yourself to no more than one drink per day
- Avoid drinks with caffeine.
Complications of Endometriosis
- Inflammation from endometriosis, which can damage the eggs and interfere with the movement of eggs and sperm
- Scar tissue from endometriosis, which can block the fallopian tubes (the tubes connecting the ovaries and the uterus)
- Allergies and asthma
- Autoimmune diseases (in which the body's immune system attacks itself), including multiple sclerosis, lupus, and some forms of hypothyroidism
- Chronic fatigue syndrome and fibromyalgia
- Certain cancers, including ovarian cancer, breast cancer, and non-Hodgkin lymphoma (a type of blood cancer)
- Severe pain with sexual intercourse
- Chronic or recurrent headaches
Research and Statistics: Who Has Endometriosis?
Related Conditions of Endometriosis
- Bowel endometriosis Bowel endometriosis can be especially tricky to detect. Bowel endometriosis, often misdiagnosed as irritable bowel syndrome, occurs when endometriosis lesions grow on the peritoneum (the membrane lining the inside of the abdomen and covering the abdominal organs), the rectum, the intestines, and other deeper bowel levels.
- Deep infiltrating endometriosis In superficial cases of endometriosis, adhesions appear on the surface of organs; deep infiltrating endometriosis, on the other hand, is invasive, growing into the peritoneal tissues of the pelvic organ.
- Miscarriage risk may be slightly higher with endometriosis, but the data is not conclusive. The evidence on this subject is mixed; some studies have found an increased risk of miscarriage among women with endometriosis. Experts don’t understand the link; whether the increased risk is related to endometriosis-caused inflammation in the uterus, dysfunctional uterine contractions, or another factor isn’t clear.
- Fertility issues It’s a myth that women with endometriosis can’t get pregnant, but it is true that it may take them longer to achieve that goal.
- An abscess on the fallopian tubes or ovaries
- Adenomyosis, in which endometrial tissue that lines the uterus infiltrates the wall of the uterus
- Cancer of the reproductive organs
- IBS (irritable bowel syndrome)
- Ovarian cysts
- Pelvic inflammatory disease
- Urinary tract or bowel problems
- Uterine fibroids (benign tumors in the uterine wall)
Resources We Love
Dr. Seckin’s Endometriosis Blog
The blog of Tamer Seckin, MD, of the Seckin Endometrial Center in New York City, provides news, education, and first-person blogs by patients. Dr. Seckin is the founder of the Endometriosis Foundation of America, an advocacy organization that offers information to patients, facilitates surgical training, and funds endometriosis research.
This organization of women with endometriosis and healthcare providers focuses on education, support, and efforts toward finding a cure.
Run by an integrative health coach, this site features stories from women with endometriosis and offers advice on natural treatments, including diet and lifestyle changes.
Endo Black aims to provide a safe space for women of color to learn about endometriosis and connect them with a supportive community. Their website includes a blog, tips on managing the disorder, and links to endometriosis specialists.
Endometriosis Comprehension and Support
For information on treatment options and supportive interaction, check out this Facebook page.
Editorial Sources and Fact-Checking
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- Endometriosis: Symptoms and Causes. Mayo Clinic. October 16, 2019.
- Schliep KC, Mumford SL, Peterson CM, et al. Pain Typology and Incident Endometriosis. Human Reproduction. October 2015.
- Endometriosis Symptoms: Neuropathy. Endometriosis Foundation of America. January 23, 2018.
- Dinsdale N, Nepomnaschy P, Crespi B, The Evolutionary Biology of Endometriosis. Evolution, Medicine and Public Health. March 12, 2021.
- Endometriosis. U.S. Department of Health and Human Services Office on Women's Health. April 1, 2019.
- Endometriosis: Diagnosis and Treatment. Mayo Clinic. October 16, 2019.
- Endometriosis Fast Facts. Endometriosis Foundation of America. July 20, 2010.
- Endometriosis. Johns Hopkins Medicine.
- Parazzini F, Chiaffarino F, Surace M, et al. Selected Food Intake and Risk of Endometriosis. Human Reproduction. July 2005.
- Cox-Henry J. Check Please! 10 Foods Endo Women Should Avoid. Endometriosis Foundation of America. February 25, 2018.
- Xu Y, Zhao WL, Li T, et al. Effects of Acupuncture for the Treatment of Endometriosis-Related Pain: A Systematic Review and Meta-Analysis. PLoS One. October 2017.
- Bonocher CM, Montenegro ML, Silva RE, et al. Endometriosis and Physical Exercises: A Systematic Review. Reproductive Biology and Endocrinology. January 2014.
- Kong S, Zhang YH, Liu CF, et al. The Complementary and Alternative Medicine for Endometriosis: A Review of Utilization and Mechanism. Evidence-Based Complementary and Alternative Medicine. February 2014.
- Sinclair J, et al. Cannabis Use, a Self-Management Strategy Among Australian Women With Endometriosis: Results From a National Online Survey. Journal of Obstetrics and Gynaecology Canada. March 2020.
- Chantalat, Elodie, et al. Estrogen Receptors and Endometriosis. International Journal of Molecular Sciences. April 17, 2020.
- Endometriosis. Resolve: The National Infertility Association.
- Kvaskoff M. Endometriosis and Co-Morbidities. Endometriosis.org.
- Endometriosis. University of Michigan Health.
- Seckin T. What Is Bowel Endometriosis? Seckin MD Endometriosis Center. October 20, 2019.
- Endometriosis Frequently Asked Questions. American College of Obstetricians and Gynecologists. February 2021.
- Chronic Female Pelvic Pain. Michigan Medicine.
- Wood R, Guidone H, Hummelshoj L. Myths and Misconceptions in Endometriosis. Endometriosis.org.