Endometriosis, an often-painful condition that affects one in nine people who menstruate, can take seven to 10 years to diagnose definitively.
But patients don’t have to wait to begin treatment. Seeking medical care now and learning how to manage flare-ups at home can help you reclaim your life.
With endometriosis, tissue that is similar to the tissue that normally lines the inside of the uterus — the endometrium – grows outside of it instead.
Dr. Kristin Riley, chief of the Division of Minimally Invasive Gynecologic Surgery at Penn State Health, says the abnormal tissue can spread to the fallopian tubes, ovaries and pelvic area as well as to the bowel, bladder, rectum, appendix and diaphragm.
The ICD-10 code system for medical billing reflects the complexity of the condition, with 168 new endometriosis codes added in 2023.
SYMPTOMS OF ENDOMETRIOSIS INCLUDE:
- Pain before, during or after periods that interferes with everyday life, such as school, work or social activities
- Pain during intercourse
- Pain with bowel movements or urination
- Chronic pelvic pain
Among the risk factors for endometriosis are having a mother, sister or daughter with the condition, beginning menstruation before age 11 or after age 14, having monthly cycles that are fewer than 27 days apart, and having heavy periods lasting more than one week.
Sometimes, doctors can find indicators of endometriosis with an ultrasound, Riley said.
“Our radiologists have a special endometriosis protocol,” she said.
“They’ll move the ultrasound around in such a way to see if organs are stuck together, which can happen with endometriosis. Or when they push in certain places, is it painful to the patient? That can be helpful.
And sometimes with an ultrasound, you can see a big cyst of endometriosis on an ovary — that’s called an endometrioma.”
Additionally, an MRI or CT scan may show endometriosis in the abdominal wall.
“That’s caused when endometrial tissue is transplanted there from a surgery, most commonly from a C-section. When we see that in patients, they’ll usually have more endometriosis in their pelvis,” Riley said.
Currently, endometriosis can only be definitively diagnosed through laparoscopy — a minimally invasive surgery where doctors use a long, skinny camera to look at the pelvic region.
If they see endometriosis, surgeons will remove as much of it as possible and also biopsy it to confirm the diagnosis.
TREATMENTS FOR ENDOMETRIOSIS
Anti-inflammatory medication. Endometriosis is an inflammatory disease, so the first-line therapy is anti-inflammatories, Riley said.
Hormone therapy. Stopping periods can also decrease the pain and inflammation of endometriosis. Doctors may prescribe birth control pills, progesterone pills or progesterone intrauterine devices.
Endometriosis medications. Once endometriosis is confirmed, your doctor may prescribe Lupron Depot, which is injected monthly or every three months, or Orilissa, an oral medication taken once or twice daily to lower estrogen levels.
Laparoscopic surgery to remove endometriosis.
The surgery success rate varies depending on the severity of the endometriosis and where it is in the body. It’s not uncommon for patients to have their endometriosis return within a year of the procedure, Riley said.
Many find relief from their pain, but others may not if their pain is due to other pain generators — like the pelvic floor or bladder. And that’s when Riley’s multidisciplinary team can help.
Penn State Health’s endometriosis/chronic pelvic pain team includes minimally invasive gynecologic surgeons, urogynecologists, colorectal surgeons, urologists, gastroenterologists, pelvic floor physical therapists, anesthesiology and pain psychiatrists and psychologists.
“Addressing all of the related complications of endometriosis through a team approach gets people more long-term relief than just surgery alone,” Riley said.
AT-HOME MANAGEMENT OF SYMPTOMS
Riley and her team work with their patients to create an individualized “flare care” kit that includes a curated list of options that each patient can do when they have a flare-up of endometriosis pain. This may include:
- Anti-inflammatory over-the-counter medications, such as ibuprofen (Motrin) and naproxen (Naprosyn)
- Heat – either warm baths or heating pads
- Transcutaneous electrical nerve stimulation (TENS) therapy, in which a battery-powered device delivers electrical impulses through electrodes placed on the skin. TENS is available by prescription only.
- Meditation and yoga
Although there is no cure for endometriosis, doctors can work with patients to develop an individualized treatment plan to help them manage the condition and its related symptoms.
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