Mythbusters: Endometriosis Edition

FACT:  Pain so severe that it disrupts daily functioning is NOT normal. Unfortunately, the vestiges of archaic stances on “women’s issues” (remember hysteria?) still pervade society and medicine. And since pain can only be subjectively reported, women are often dismissed as having low pain thresholds or worse — imagining nonexistent pain. The truth is that if pain is interfering with day-to-day life (school, work, social engagements, etc.), it is NOT normal and could be a symptom of endometriosis or adenomyosis.

MYTH #2: Endo pain only occurs during menstruation

FACT: Dysmenorrhea (pain during menstruation) is often the most talked-about symptom of endometriosis, but many women with endo also experience pain during sex (dyspareunia), urination (dysuria), bowel movement (dyschezia), or ovulation. For some, pain worsens around the time of the period, but for many pain is constant or unpredictable.¹

MYTH #3: Endometriosis = long, heavy periods

FACT: Some women with endometriosis report long menstrual cycles and heavy bleeding, while others have lighter shorter periods. Consistently long and heavy periods are actually more characteristic of adenomyosis, a separate disease in which the endometrium grows into the uterine muscle. The two conditions are often confused because, like endometriosis, adenomyosis can also cause menstrual pain and chronic pelvic pain.²

MYTH #4: The stage of your disease correlates to the severity of your pain (in other words, Stage IV endometriosis causes more severe pain than Stage I endometriosis)

FACT: Endometriosis is baffling. Although its growths are technically benign (not-cancerous), its activity is similar to malignant tumors in the sense that it grows, infiltrates, and adheres to tissues and interferes with healthy physiological processes. Stage I (minimal) endo is characterized by isolated implants and no adhesions. Stage II (mild) endo is characterized by “superficial” implants and no adhesions. Stage III (moderate) endo is characterized by multiple deep implants, cysts on the ovaries, and the presence of adhesions. Stage IV (severe) endo is characterized by multiple deep implants, large cysts on the ovaries, and thick adhesions. Surprisingly, however, the severity of a patient’s pain has no correlation whatsoever to the stage of the disease. It’s possible that an isolated implant on a nerve would cause more pain than a deep implant elsewhere, but ultimately the mismatch between pain and stage of disease remains a mystery that no one fully understands.³

MYTH #5: Endometriosis mostly affects (white) women aged 30-50

FACT: Endometriosis does not discriminate by age or race. It can grow in anyone born with a uterus, with the first symptoms commonly reported in preadolescence with the start of puberty, and the disease has actually also been found in fetuses.^{4, 5}

MYTH #6: Pregnancy cures endometriosis

FACT: Many women with endometriosis (including adolescents!) are advised that pregnancy helps endometriosis by slowing the disease’s progression and even curing it. The increase of progesterone during pregnancy can act like a hormone suppression treatment to temporarily reduce pain, but there is no evidence that pregnancy can reduce the size or number of lesions caused by endometriosis, and its suppressive effects do not last beyond pregnancy and breastfeeding. The idea of pregnancy for the sake of treating endo is, plainly put, bad advice.⁶

MYTH #7: Hysterectomy cures endometriosis

FACT: I’ve had countless women tell me, “I used to have endometriosis, too, but then I got a hysterectomy.” And while it’s true that many people find a great deal of relief after hysterectomies, the fact of the matter is that recurrence of endometriosis after hysterectomy is 62%, and even higher when the ovaries are conserved. Because endometriosis is growth outside the uterus, removing the uterus does not remove endometriosis, which must be surgically excised by a specialist. But confusion is added by the fact that a hysterectomy does cure adenomyosis, a disease that is often overlooked or mistaken for endometriosis; many women who feel relief after hysterectomy may have had adenomyosis. ⁷

MYTH #8: Surgery cures endometriosis

FACT: While there is currently no cure for endometriosis, the best treatment is deep surgical excision with a specialist, because it removes the endometriotic lesions, including “roots” hiding deeper below surface tissue, lessening the likelihood that the disease will grow back in the same place. Other surgical treatments like ablation and cauterization, though more common, have been shown to be much less effective because they only remove the surface tissue. After surgery, symptoms can be managed with medications, physical therapy, nutrition, and other holistic approaches, including acupuncture.⁸

MYTH #9: Endometriosis is the endometrium (uterine lining) growing outside the uterus

FACT: This myth has been perpetuated by imprecise medical literature. In fact, endometriosis has been determined to be an endometrium-like tissue, but is unique and distinct from the endometrium.^{9, 10, 11}

MYTH #10: Endometriosis grows in the pelvic cavity near the uterus

FACT: It’s true that endo is most commonly found in the pelvic cavity, and often attaches to the uterus, fallopian tubes, ovaries, bladder, peritoneum, uterosacral ligaments, bowels, appendix, rectum, and vagina. But endo appears in other surprising places: it has been found in the lungs, on the diaphragm, and even in the brain.¹²

References

1. Berkley KJ Rapkin AJ and Papka RE. The pains of endometriosis. Science. 2005 Jun 10;308(5728):1587-9.
2. https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-causes/syc-20369138
3. Bloski, T., & Pierson, R. (2008). Endometriosis and Chronic Pelvic Pain: Unraveling the Mystery Behind this Complex Condition. Nursing for women’s health, 12(5), 382-95. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096669/
4. Signorile PG et al. New evidence for the presence of endometriosis in the human fetus. Reprod Biomed Online. 2010 Jul;21(1):142-7. doi: 10.1016/j.rbmo.2010.04.002. Epub 2010 Apr 4
5. Propst AM and Laufer MR. Endometriosis in adolescents. Incidence, diagnosis, and treatment. J Reprod Med 1999;44(9):751-8.
6. Leeners B, Damaso F, Ochsenbein-Kolble N, and Farquhar C. The effect of pregnancy on endometriosis-fact or fiction? Hum Reprod Update. 2018 May 1;24(3):290-299. doi: 10.1093/humupd/dmy004
7. Rizk B, Fischer AS, Lotfy HA, et al. Recurrence of endometriosis after hysterectomy. Facts Views Vis Obgyn. 2014;6(4):219-27.
8. https://www.endofound.org/endometriosis
9. Giudice LC. Clinical practice Endometriosis. N Engl J Med.2010;362(25): 2389–2398
10. Endometriosis: Overview
11. Endometriosis: Condition Information
12. https://www.womenshealth.gov/a-z-topics/endometriosis