Despite what you may have been told growing up, severely painful periods are not normal and can be a sign of a more serious problem. Endometriosis is a chronic inflammatory condition where endometrial-like tissue affects organs in the pelvic area. The lesions trigger an inflammatory reaction that can result in chronic pain (pain lasting more than six months) that typically worsens with the menstrual cycle, generating pain, adhesions and scar tissue buildup in the pelvic area.
About one in 10 women have endometriosis, meaning around 200 million women suffer from it worldwide, but many go undiagnosed for sometimes up to 10 or more years. UT Health Austin Women’s Health Institute endometriosis experts Dr. Christina Salazar and Dr. Michael Breen are here to tell you, yes, your pain is real and, yes, you deserve answers and treatment.
What do we know about the cause of endometriosis?
While the causes of endometriosis might not be fully understood yet, Breen explains, “We think that there is a hereditary component or a genetic link that we have not identified yet. For example, if you have family members, such as your mother, grandmother or aunt, usually on your mother’s side, that have the condition, that can be a risk factor.”
There may be an embryologic origin of endometriosis as well; the condition has been found in premenarchal females (girls who haven’t had their first menstrual period) and in some rare cases, men. Evidence shows that it can spread to various areas in the body beyond the pelvic region.
“We also think that there are cells that are predestined to be uterine lining cells, and they develop outside the uterus in the embryonic phase, which ultimately causes endometriosis,” Breen says. “These cells can sometimes appear in other places, such as the lung or the brain, although that is very rare.”
What are the risks associated with endometriosis?
If the pain and symptoms worsen as the endometriotic lesions become deeper and more fibrotic, infertility may occur, as well as possible bladder or bowel dysfunction, or pain with sex. Ovarian cysts, called endometriomas, can form and other structures can be damaged if infiltration occurs in the bladder, the rectum or the ureter (the duct that urine passes through from the kidney to the bladder), which can potentially cause loss of kidney function.
“Many patients with endometriosis often suffer from other linked comorbid conditions, such as interstitial cystitis, irritable bowel syndrome, inflammatory bowel disease, chronic headaches, chronic low-back pain, vulvodynia, fibromyalgia, temporomandibular joint disease, chronic fatigue syndrome and mood conditions, such as depression, anxiety and PTSD,” Salazar says.
How do you diagnose and treat endometriosis?
“Minimally invasive laparoscopic surgery remains the gold standard for diagnosing and treating endometriosis,” Salazar says. “Advanced laparoscopic techniques allow endometriosis surgeons the ability to diagnose and therapeutically surgically excise endometriosis.”
“There are different stages of endometriosis: Stage one is minimal endometriosis, and it goes up to stage four, which is cohesive adhesions, but clinical symptoms are very variable,” Breen says. “This means a patient with stage one may be experiencing extreme pain, whereas a patient with stage three or four may be experiencing minimal pain. So, many times recurrent surgery is dependent on what the symptoms are for the patient. Our goal is to try to do one surgery to diagnose and resect, and then hope a patient never has to have surgery again.”
What is the medical community doing to learn more?
While there still may be a lot of work to do in terms of understanding the condition, clinicians at UT Health Austin, the Dell Medical School and other departments across the University of Texas are making progress as more government funding is becoming available for research and as nonprofit organizations and patients are advocating for awareness and change.
“We know that endometriosis doesn’t start affecting a woman when she’s 30, but likely started when she had her first menstrual cycle in her teens,” Breen says. “Here in Austin, we are doing a lot of work that includes resections of endometriosis in adolescent patients that, 10 years ago, we wouldn’t have considered doing surgery [on]. The goal is to identify ways to isolate those patients that are appropriate for surgery and be able to intervene and deliver care earlier in life.”
Dr. Livia Eberlin, a research scientist at the UT Mass Spectrometry Lab, is working with Breen to research ways that will identify endometriosis without surgery, by analyzing the disease’s unique signature on the mass spectrometer analysis.
For more information about the Women’s Health Institute at UT Health Austin, call 1.833.UT.CARES (1.833.882.2737) or visit uthealthaustin.org.