The tissue that lines the uterus is known as endometrium. Endometriosis is a chronic condition in which endometrial-like tissue grows outside of the uterus. With endometriosis, the lining is often found growing on the ovaries and fallopian tubes, but can also occur on the vagina, rectum, vulva, bowel, and bladder. Although it can spread beyond the pelvis, this is rare.
Progression of endometriosis
Endometriosis is generally thought to be a progressive condition, although this isn’t always the case in every person with the condition.
In adolescents with endometriosis, progression can be difficult to assess and track. This is because when endometriosis is diagnosed, lesions are often removed or surgically destroyed (ablation).2 During laparoscopy, a surgical procedure that allows surgeons to make small incisions on the abdomen and insert a thin tube with a camera at the end to look at the organs inside, it can be challenging to differentiate between disease progression and adhesions from previous treatment.2 Sometimes lesions can even disappear and then reappear, if they are particularly mild.
After the onset of symptoms, most women say that it takes another 7 to 12 years before the condition is diagnosed surgically.1 Sometimes chronic pelvic pain associated with endometriosis occurs even before the onset of menstruation, or menarche, which makes diagnosis challenging.2 Often times, the pain is dismissed as typical menstrual cramps or the pain may be minimized by health care providers. Because pain is not necessarily correlated with disease spread, by the time diagnosis occurs, the endometriosis might have spread considerably, possibly affecting other organs and future fertility.
This delay in diagnosis can result in years or decades of unnecessary pain, as well as potential negative and long-lasting side effects. Some women don’t have any pain, and the endometriosis is only diagnosed through exploration due to another condition, like infertility.4
Outlook for endometriosis
If endometriosis is left unchecked or diagnosed after a long period of time, infertility is one of the most common complications of the condition. It is estimated that one-third to one-half of women with endometriosis have some difficulty getting pregnant3. This is because the overgrowth of tissue in endometriosis can obstruct the fallopian tubes, preventing conception, or making it extremely difficult.3
While endometriosis can be progressive, early diagnosis and treatment is crucial for the best outcome and relief of symptoms. When symptoms first arise, call your gynecologist. They will ask you about your symptoms, including how long you’ve experienced symptoms and how severe they are. Your gynecologist will also likely perform a pelvic exam, where they’ll be able to palpate your uterus and possibly feel any areas that might have scarring or a buildup of tissue. They can also order imaging tests like an ultrasound, and if necessary, subsequently refer you to a surgeon if surgical diagnosis is warranted. If your gynecologist performs surgery, they might be able to do this. Early diagnosis and treatment can also potentially reduce the risk of progression of the condition, and help to preserve fertility and minimize negative effects on health and quality of life.1
Yeung P, Sinervo K, Albee R. Endometriosis morbidity: Can it be prevented with early diagnosis and complete excision? Endometriosis.org website. http://endometriosis.org/news/opinion/endometriosis-morbidity-can-it-be-prevented-with-early-diagnosis-and-complete-excision/ Accessed July 18, 2018.
Brosens I, Gordts S, Benagiano G. Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion. Hum Reprod. 2013; 28(8); 2026-2031. doi: 10.1093/humrep/det243.
Endometriosis. Mayo Clinic website. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656 Published March 9, 2018. Accessed July 20, 2018.
Endometriosis. Yale Medicine website. https://www.yalemedicine.org/conditions/endometriosis/ Accessed July 19, 2018.