Reviewed by: Michael Breen, MD, and Christina Salazar, MD
Written by: Lauryn Feil
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 including the uterus, ovaries, fallopian tubes, bladder, intestines, and rectum as well as areas outside of the pelvis. The lesions trigger an inflammatory reaction that typically worsens with the menstrual cycle, resulting in chronic pain (pain that is present for more than 6 months), adhesions, and scar tissue buildup in the pelvic area.
About one in ten women, nearly 200 million worldwide, have endometriosis, but many go undiagnosed for sometimes up to ten or more years. UT Health Austin endometriosis experts in the Women’s Health Institute, Christina Salazar, MD, and Michael Breen, MD, are here to tell you, no, your pain is real and, yes, you deserve answers and treatment.
What do we know about the cause of endometriosis?
While the cause of endometriosis might not be fully understood yet, Dr. Breen explains that certain things may increase a woman’s risk of having it. “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,” he explains.
There may also be an embryologic origin of endometriosis given endometriosis has been found in pre-menarchal females (girls who haven’t had their first menstrual period) and in men, and 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. These cells can sometimes appear in other places, such as the lung or the brain, although that is very rare,” says Dr. Breen.
But no single theory fully explains the causes of endometriosis in all patients. Dr. Salazar says that some patients may be just born with mechanisms that, when later combined, create “the perfect storm,” so to speak, that triggers the disease.
What are symptoms and red flags you look for in patients?
Not all patients with endometriosis experience all symptoms, but some of the classic signs include the “three D’s” as Dr. Breen described it, which are hallmarks of the condition, in addition to other symptoms that may be present:
- Dysmenorrhea – severe menstrual cramping
- Dyschezia – severely painful bowel movements or cramping following a bowel movement, may also include rectal bleeding
- Dyspareunia – painful sex or pain after sex
- Abdominal/pelvic pain or chronic pelvic pain
- Retroverted uterus or a uterus that is tipped backward
- Long, heavy periods
What are the risks associated with endometriosis?
According to Dr. Salazar, 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. Other structures can also be damaged if infiltration occurs in the bladder, the rectum, or in the ureter, the duct that urine passes 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,” says Dr. Salazar. “These significantly impact quality of life.”
Dr. Salazar also says, “In recent years, a risk of potential cancer with endometriosis has emerged, which is still being studied. It is still considered typically a benign disease, but research is needed to study the associated risk of malignancy.”
How do you diagnose and treat endometriosis?
“Minimally invasive laparoscopic surgery remains the gold standard for diagnosing and treating endometriosis,” says Dr. Salazar. “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,” explains Dr. Breen. “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 now is to try to do one surgery to diagnose and resect, and then hope a patient never has to have surgery again.”
In addition to complete surgical resection, Dr. Salazar describes the ideal approach to treating endometriosis as one with a multidisciplinary team that comprises various experts that can help patients manage symptoms medically as well as physically and emotionally. The team at UT Health Austin includes clinicians with expertise in:
- Physical Therapy – a non-invasive, helpful way of managing symptoms
- Behavioral Therapy – helpful for managing and treating chronic pain
- Alternative Therapies – to alleviate pain (e.g., acupuncture, aromatherapy, exercise)
- Diet/Nutrition – for a healthy lifestyle
- Medical Suppression – a helpful way to treat symptoms but not the disease itself
What are we 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 at Austin 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,” says Dr. Breen. “Here in Austin, we are doing a lot of work that includes resections of endometriosis in adolescent patients that ten years ago, we wouldn’t have considered doing surgery. 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 here at The University of Texas in the Mass Spectrometry Lab, is working with Dr. Breen to research ways that we may eventually identify endometriosis without doing surgery due to a unique signature endometriosis will possess on the mass spectrometer analysis.
“There’s a lot of exciting things going on here, and with our team of pediatricians, adolescent medicine specialists, and adolescent gynecologists, we hope to readily treat women in their teens rather than them suffer for 15 years until someone finally says, ‘Oh, maybe you have endometriosis,’” says Dr. Breen.