What is endometriosis?
Endometriosis is a condition that can cause chronic pelvic pain, especially at the time of menses. It isn’t just ‘bad periods.’ The disease affects one in 10 reproductive-aged women (aged 12-52)—an estimated 200 million individuals worldwide—and many often experience a decade-long delay in diagnosis. Currently, there is no known exact cause of endometriosis, and there is no cure.
It is unlikely that there is only one cause for endometriosis. Some studies suggest a genetic component. One of the oldest theories proposes that menstrual blood containing endometrial cells flows backward through the fallopian tubes and into the pelvic cavity rather than out of the body. These endometrial cells that should have been shed can spread and implant lesions anywhere in the belly.
The most common location of implantation is the peritoneum, a layer of tissue that lines the surface of the abdomen. Endometrial cells can also implant on organs such as the bowel, bladder, and ovaries. During menses, these implants (lesions) can grow and become inflamed, causing significant pelvic pain. The inflammation can also cause scarring in the abdomen, which often causes constant pelvic pain. It can also cause infertility by distorting the anatomy of the fallopian tubes and ovaries.
How is endometriosis diagnosed?
Although many physicians may make a presumptive diagnosis of endometriosis and begin treatment with hormones for women who present with pelvic pain with menses, women must understand that endometriosis is one of many possible causes of pelvic pain. Therefore, further investigation is necessary to pinpoint the cause of the pelvic pain. Other causes may include fibroids, adenomyosis, ovarian cysts, intestinal problems, bladder problems, etc.
Endometriosis can only be definitively diagnosed after surgical confirmation. Lesions suspicious for endometriosis are identified, and tissue samples are sent to the pathologists who ultimately confirm the diagnosis. Pathologic confirmation is necessary because although most surgeons can identify lesions that are suspicious for endometriosis, visual diagnosis of endometriosis is not an accurate mode of diagnosis. The appearance of endometriosis varies significantly from person to person.
How is endometriosis managed?
Endometriosis can be treated with a variety of surgical methods. If a woman has completed childbearing, definitive surgery can be performed, which entails removal of the uterus, with or without removal of the ovaries. For women who desire future pregnancy, surgeons will eradicate just the endometriosis lesions and attempt to restore the natural anatomy of the pelvis. The lesions can be removed in a few ways: (1) burning of the lesions with laser or other electrocautery devices, and (2) resection (cutting out) of the lesions. Some lesions are superficial, just on the surface of the peritoneum, while other lesions invade deeper into the tissue, requiring more extensive dissection. The technique used to eradicate these lesions varies from physician to physician.
For more information, visit The Endometriosis Foundation of America’s website to read “Endometriosis A-Z.”
What is adenomyosis?
Adenomyosis is endometriosis strictly of the uterus. It occurs when endometrial tissue, the same tissue that normally lines the uterus, moves into the muscular wall of the uterus. This disease presents with incapacitating period pain and pelvic pain as well as heavy bleeding, dysmenorrhea, and infertility. It likely affects 15 percent of all women.
If a patient chooses, a hysterectomy may be a last resort to treat adenomyosis. Read Gabrielle Union’s story about her journey as a patient with adenomyosis here, on The Endometriosis Foundation of America’s website.
How can I make an appointment with a doctor who treats endometriosis or adenomyosis?
For individuals in the Boston area, we recommend our clinical collaborators at Newton-Wellesley Hospital. You can call them at 617-243-5205 or visit the Center for Minimally Invasive Gynecologic Surgery.
What are gynepathologies?
Gynepathologies are non-cancerous diseases of the female reproductive tract. They affect well over half of all women during their lifetimes. Gynepathologies, including endometriosis, uterine fibroids, polycystic ovarian syndrome, Asherman’s syndrome, and others, involve aberrant growth of reproductive tract tissues, often leading to symptoms of debilitating pain, bleeding, and infertility.
Beyond CGR, what other organizations are doing similar endometriosis research, outreach, or provide support?
Here are a few we recommend:
Endometriosis Foundation of America (EndoFound) – This nonprofit places particular emphasis on the critical importance of early diagnosis and effective intervention while also providing education to the next generation of medical professionals and their patients.
MyEndometriosisTeam – This is a social network for women living with endometriosis, where members can interact with each other about their experiences and struggles with the disease.
Daily Strength: Endometriosis Support Group – Daily Strength is a large network of people sharing their knowledge, experience, and support regarding endometriosis. On this site, women can create journals, track goals, share photos, and speak with others about their experiences. Expert advice from medical doctors is available as well.
The World Endometriosis Research Foundation (WERF) on Facebook – The WERF is a global charity of over 8,300 members that fosters and funds research in endometriosis to improve knowledge and treatments. This group allows for a safe internet dialogue between women all over the country to talk about dealing with endometriosis.
How do I support the efforts of the CGR?
Donate to the CGR by clicking here.