Endometriosis: The Excruciating Invisible Disease

By Victoria Silvis

May 8th-14th, 2022 is National Women’s Health Week, a time where women are reminded to put themselves first and ensure they are looking out for their own health and wellbeing. So, let’s shed light on an invisible, chronic, and debilitating disease that affects an estimated 2-10% of women across the nation (Figure 1).1 Endometriosis, while relatively common, is poorly understood and the manifestation, presentation, and severity are individualistic.1

Figure 1. Image depicting 1 in 10 women who suffer from endometriosis. “I am 1 in 10” is a common phrase used among endometriosis patients. Yellow is the color universally associated with endometriosis.

What is endometriosis?

The word endometriosis arises from endometrium, the name of the tissue that lines the uterus and is shed monthly during a menstrual cycle. In endometriosis (EM), tissue similar to endometrial tissue, both in appearance and function, finds its way into the abdominal cavity where it attaches to organs and the abdominal wall. Since this tissue functions similar to endometrial tissue, it responds to the hormones governing the menstrual cycle, leading to monthly shedding and bleeding within the abdominal cavity. Eventually, this shedding and bleeding causes inflammation, swelling, and damage of the surrounding healthy tissue.2

What are the symptoms of endometriosis?

EM symptoms are often overlooked since they are relatively non-specific and are easy to associate with other conditions such as pelvic inflammatory disease, irritable bowel syndrome, ovarian cysts, and even periods themselves.3 These symptoms are highly variable and individualistic, ranging from severe cramps throughout the abdomen, pelvis, and back, as well as pain with urination and bowel movements, to excessive bleeding during a period or between periods. In addition, 30-50% of women with EM struggle with pregnancy due to altered anatomy, scarring of reproductive organs, blocked Fallopian tubes, and hormonal changes.4 Notably, symptom prevalence and severity vary widely and are not necessarily related to the level of tissue damage; some individuals have severe disease with no pain and others have mild to moderate disease with debilitating pain (see below for disease classification and staging).3

Approximately 4 out of 10 women with EM experience EM symptoms on a daily basis for their entire life and many are unaware that these are not typical period related symptoms.5 Times of exacerbated disease or more severe symptom presentation are called flare-ups and can be triggered for many reasons, such as consumption of inflammatory foods, exercise, or stress.6 Flare-ups can occasionally be predicted based on a ‘ramp-up’ of symptoms, or can appear without warning, making management of daily life difficult.7

How is EM staged?

Endometrial tissue in the abdominal cavity can stick to any of the abdominal and pelvic organs, with the most frequent sites being the ovaries, Fallopian tubes, uterosacral ligaments, and the uterus itself (Figure 2).8 EM is staged by a weighted numeric system where the location and severity of adhesions are summed and categorized into four stages (Figure 3).This staging system accounts for deeply infiltrating endometriosis (DIE), where abnormal tissue infiltrates surrounding healthy tissue at least 5mm deep. DIE can occur on the bladder, uterus, uterosacral ligaments, and bowel.10 However, this staging system does not account for the pain associated with the adhesions because staging does not indicate symptom severity, merely the severity of inflammation and adhesion.1

Figure 2. Sagittal view of female pelvis to show various organs where endometriosis can occur.(9)

How is EM diagnosed?

Unfortunately, there is no available blood test or imaging modality to diagnose and stage EM. At present, diagnostic laparoscopy, inserting a camera into the abdominal cavity to see if there is any abnormal tissue, remains the gold-standard for diagnosis. While undergoing this procedure, the surgeon is able to take biopsies of suspected areas of endometrial seeding and rule out any other intra-abdominal pathology.11,12

Figure 3. Simplified endometriosis scoring and staging according to the revised American Society for Reproductive Medicine (rASRM) standards.(1)

How is EM treated?

Currently there is no cure for EM, so treatments focus on symptom management. Over the counter pain medications and prescription pain relievers may work well for those with milder symptoms. Due to the hormonal nature of EM, hormonal therapy is often the next line of treatment.13 The goal of hormone therapy is to alter the body’s natural hormone production in an effort to slow the growth and activity of extra-uterine endometrial tissue while also providing some symptom relief. Hormone therapies include oral contraceptives, an intrauterine device (IUD), or gonadotropin-releasing hormone (GnRH) medication.14,15

Surgery can provide some symptom relief as well by removing abnormal tissue during a laparoscopy. Tissue may be removed either by excision, where all visible abnormal tissue is cut away from healthy tissue, or by ablation, where the abnormal tissue is burned away. Some EM sufferers opt to have a hysterectomy (removal of the uterus) or total hysterectomy (removal of the uterus, ovaries, and Fallopian tubes) in an effort to relieve symptoms, but even this drastic measure does not guarantee symptom relief.14,15

Some women with EM turn to holistic methods of pain relief. Due to the inflammatory nature of the disease, some find that anti-inflammatory diets, such as the Mediterranean and DASH diets, help significantly. Transcutaneous electrical nerve stimulation (TENS) units, heating pads, pelvic floor therapy, yoga, acupuncture, and herbal remedies are also common pain management techniques.16-18

So, what causes EM?

In short, we don’t know. There are numerous hypotheses on how EM arises, but none are able to explain all manifestations of EM. One theory is that of retrograde menstruation, where menstrual blood containing endometrial cells flow back through the Fallopian tubes and into the pelvic cavity, at which point, the cells stick to surfaces within the abdominal and pelvic cavities.19 However, up to 90% of women experience retrograde menstruation, which raises questions about why some women, but not all, who experience this phenomenon develop EM.20 A second hypothesis of EM development is called induction theory where peritoneal cells lining the abdominal cavity are transformed into endometrial-like cells via hormones or immune factors.3

Support “Endo Warriors”

The vast array of symptoms and disease presentation make EM difficult to study and the lack of research and education impacts EM sufferers the most. EM symptoms being made to seem normal leads to major delays, up to 10 years, in achieving the proper diagnosis and treatment.21,22 There is also a lack of education on EM as providers unfamiliar with the condition have been known to counsel patients that pregnancy will cure endometriosis. Importantly, pregnancy can merely relieve symptoms for the duration of pregnancy, and pain often returns after giving birth. Due to the unpredictable nature of symptoms and flare-ups, women with EM are likely to require frequent sick-leave and possibly experience difficulty maintaining employment, increasing health-care costs while decreasing quality of life.23

The best way for you to support an “endo warrior” is to talk with them and learn of the disease impacts. Given the organs involved, there is a social taboo and embarrassment associated with the disease, making it more difficult to shed light on this common, yet silent, condition. Let us remove the stigma surrounding the female reproductive system and the diseases associated with it. If you are 1 in 10, know that you did not do something to cause this, know that you deserve to have good days, and know that you are not alone for I am also 1 in 10.

To learn more about endometriosis, the Endometriosis Research Center, Endometriosis Foundation of America, and the American College of Obstetricians and Gynecologists provide wonderful information and resources.


  • 1 in 10 women suffer from endometriosis worldwide
  • Endometriosis is a chronic pain and inflammatory disease with no known cause or cure
  • Endometriosis treatment focuses on medicinal and surgical symptom management


  1. Lee S, Koo Y, Lee D. Classification of endometriosis. Yeungnam Univ J Med. 2021 Jan; 38(1):10-8. doi: 10.12701/yujm.2020.00444
  2. Greene AD, Lang SA, Kendziorski JA, Sroga-Rios JM, Herzog TJ, Burns KA. Endometriosis: where are we and where are we going? Reproduction. 2016 Sep;152(3):R63-78. doi: 10.1530/REP-16-0052
  3. Endometriosis. Mayo Clinic (2018). Available from: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
  4. Endometriosis: Does It Cause Infertility? American Society for Reproductive Medicine (2016). Available from: https://www.reproductivefacts.org/news-and-publications/patient-fact-sheets-and-booklets/documents/fact-sheets-and-info-booklets/endometriosis-does-it-cause-infertility/#:~:text=Endometriosis%20can%20influence%20fertility%20in, pregnancy%2C%20and%20altered%20egg%20quality
  5. What Does Endometriosis Pain Feel Like? Health Union: Endometriosis.net (2021). Available from: https://endometriosis.net/living/pain-description
  6. What Are Endo Attacks and How to Cope With Them. Seckin MD: Endometriosis Center (2021). Available from: https://drseckin.com/what-are-endo-attacks-and-how-to-cope-with-them/#:~:text=High%20levels%20of%20estrogen%20and,%2C%20alcohol% 2C%20and%20red%20meat
  7. Breaking Down Endometriosis Pain and Flare-Ups. Endometrix (2020). Available from: https://endo-metrix.com/endometrix-blog/endometriosis-pain-and-flareups
  8. Understanding Endometriosis – Information Pack. Endometriosis UK (2012). Available from: https://www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Information/Understanding-endometriosis.pdf
  9. Endometriosis. Johns Hopkins Medicine. Available from:  https://www.hopkinsmedicine. org/health/conditions-and-diseases/endometriosis
  10. Yin S, Lin Q, Xu F, Xu J, Zhang Y. Diagnosis of Deep Infiltrating Endometriosis Using Transvaginal Ultrasonography. Front Med (Lausanne). 2020 Nov 23;7:567929. doi: 10.3389/fmed.2020.567929
  11. Endometriosis: Symptoms, Treatment, Diagnosis. UCLA Health. Available fromL https://www.uclahealth.org/obgyn/endometriosis
  12. https://www.ncbi.nlm.nih.gov/books/NBK559230/
  13. Schrager S, Falleroni J, Edgoose J. Evaluation and Treatment of Endometriosis. Am Fam Physician. 2013 Jan 15;87(2):107-13.
  14. What are the treatments for endometriosis? National Institutes of Health: Eunice Kenedy Schriver National Institute of Child Health and Human Development (2020). Available from: https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/treatment
  15. Vercellini P, Vigano P, Somigliana E, Fedele L. Endometriosis: Pathogenesis and treatment. Nat Rev Endocrinol. 2014 May;10(5):261-75. doi: 10.1038/nrendo.2013.255
  16. Kong S, Zhang Y, Liu C, Tsui I, Guo Y, Ai B, Han F. The Complementary and Alternative Medicine for Endometriosis: A Review of Utilization and Mechanism. Evid Based Complement Alternat Med. 2014;2014:146383. doi: 10.1155/2014/146383
  17. Can a TENS Unity Help Endo Pain? Health Union: Endometriosis.net (2019). Available from: https://endometriosis.net/clinical/tens-pain
  18. Pain Relief for Endometriosis. Endometriosis UK. Available from: https://www.endometriosis-uk.org/pain-relief-endometriosis
  19. Endometriosis. U.S. Department of Health & Human Services: Office of Women’s Health (2021). Available from: https://www.womenshealth.gov/a-z-topics/endometriosis
  20. Halme J, Hammond MG, Kulka JF, Raj SG, Talbert LM. Retrograde menstruation in healthy women and in patients with endometriosis. Obstet Gynecol. 1984 Aug;64(2):151-4.
  21. Facts about endometriosis. Endometriosis.org (2013). Available from: https://endometriosis.org/resources/articles/facts-about-endometriosis/
  22. Endometriosis Diagnosis. AbbVie Inc.: Speakendo.com. Available fromL https://www.speakendo.com/about-endometriosis/testing
  23. Sperschneider ML, Hengartner MP, Kohl-Schwartz A, Geraedts K, Rauchfuss M, Woelfler MM, Haeberlin F, von Orelli S, Eberhard M, Maurer K, Imthurn B, Imesch P, Leeners B. Does endometriosis affect professional life? A matched case-control study in Switzerland, Germany and Austria. BMJ Open. 2019;9(1):e019570. doi: 10.1136/bmjopen-2017-019570

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