If you’re among the 10% of women nationwide who have endometriosis, you know that the inflammatory condition can cause severe pelvic pain. While there’s no way to prevent getting the incurable disorder, a wide range of treatment options are available to help manage the pain and related complications.

Dr. Kristin Riley, interim chief of the Division of Minimally Invasive Gynecologic Surgery at Penn State Health Milton S. Hershey Medical Center, and her team see patients for complex, benign gynecological problems, including abnormal bleeding, fibroids and ovarian cysts. But an overwhelming majority of their patients come in with chronic pelvic pain caused by endometriosis.

The condition causes tissue that normally lines the inside of the uterus — the endometrium – to grow outside of it instead. This abnormal tissue can spread to the fallopian tubes, ovaries and pelvic area. It can also extend to the bowel, bladder, rectum, appendix and diaphragm. The condition can cause infertility.

Varying symptoms

“The most common symptom of endometriosis is painful periods,” Riley said. But how can women know what’s not “normal” menstrual pain?

“We’re talking about the kind of pain that doesn’t go away with a simple treatment, like over-the-counter medications,” Riley said. “Pain that keeps you from going to work or school or from participating in social activities.”

Usually that pain occurs before, during or just after periods. But some women may experience pain at times not readily associated with endometriosis, Riley said. “They may only have pain during ovulation or during intercourse. Others may only experience pain during bowel movements.”

Endometriotic pain can come and go, Riley said. “Some people get painful flares and then get relief for a long period of time.”

While a majority of the patients Riley sees for endometriosis are in their 30s and 40s, some are still in their teens. Others are in their 50s.

“In most patients, the pain gets better after menopause, but a small percentage will continue to have pain,” Riley said.

Diagnosis and treatment

On average, it can take seven to 10 years for a patient to get a confirmed diagnosis of endometriosis, mainly because noninvasive testing isn’t available.

“We can try an MRI or ultrasound, but most of the time patients with endometriosis have normal pelvic imaging,” Riley said. Research is underway to develop diagnostic blood tests, but for now, “a definitive diagnosis can only come from laparoscopy — a minimally invasive surgery where we look at the pelvis with a long, skinny camera.”

Fortunately, treatment for endometriosis can begin long before a confirmed diagnosis.

“The first-line therapy is anti-inflammatories,” Riley said. “Any time a patient with endometriosis gets a period, there’s a whole inflammatory cascade that happens in their pelvis. Consistent use of anti-inflammatory medications can decrease that inflammatory response and that can help with the pain.”

Another therapy is menstrual suppression such as a birth control pill, progesterone pill or progesterone intrauterine device.

“When we stop the periods, the pain and inflammation decrease,” Riley said. “We also can use nerve pain medications and other hormonal treatments.”

And patients can find relief through laparoscopy. “If we see endometriosis during the diagnostic procedure, we’ll go ahead and remove the tissue at that time,” Riley said. “Typically, patients will get six to 12 months of pain relief. Unfortunately, endometriosis does tend to come back. At that time, we’ll return to the types of treatments that worked for the patient previously.”

With a confirmed diagnosis of endometriosis, Riley may also prescribe an endometriosis-specific medication: Lupron Depot, which is injected monthly or every three months, or Orilissa, an oral medication taken once or twice daily to lower estrogen levels.

A team approach

“There are downstream effects of endometriosis,” Riley said. “You can start off with a problem that’s rather simple, but develop other, related problems.” These may include painful intercourse, irritable bowel syndrome and interstitial cystitis — also called painful bladder syndrome.

Riley works with a multidisciplinary chronic pelvic pain team comprised of minimally invasive gynecological surgeons, urogynecologists, colorectal surgeons, urologists, gastroenterologists, pelvic floor physical therapists 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.

That team has another key player: the patient. Riley wants all patients to advocate for themselves.

“If you’re not being heard, if you’re not getting the answers that you need, seek another opinion with another doctor," Riley said.

Related content:

• Penn State Health Obstetrics and Gynecology
• The Medical Minute: Endometriosis is incurable, but women have options
• Researchers join study evaluating blood test to diagnose endometriosis

The Medical Minute is a weekly health news feature produced by Penn State Health. Articles feature the expertise of faculty, physicians and staff, and are designed to offer timely, relevant health information of interest to a broad audience.