It’s a condition as common as asthma or diabetes, affecting one in 10 women of reproductive age. Its symptoms aren’t as clear-cut as an asthma attack, but it can negatively impact a woman’s quality of life as much, and sometimes more, than more recognizable chronic diseases.
It’s endometriosis, a disorder in which tissue similar to the tissue that normally lines the inside of the uterus grows outside of the uterus, and it’s one of the most common causes of pelvic pain in women of child-bearing age. Despite how common endometriosis is, there is usually a significant delay in diagnosis—it can often take physicians several years to identify and treat it.
“We sometimes refer to the pelvic area as a black box, because chronic pelvic pain can be so difficult to diagnose,” said Nicole Donnellan, director of UPMC Magee-Womens Hospital’s new Chronic Pelvic Pain and Endometriosis Center. “There are many different conditions that can cause pelvic pain, including bladder or muscle spasms, uterine issues and even gastrointestinal problems. Chronic pelvic pain doesn’t always mean endometriosis.”
The difficulties in diagnosing pelvic pain, combined with the all-too-common treatment delays, propelled Donnellan to spearhead the creation of the new center, which seeks to improve early diagnosis and treatment of endometriosis and other pelvic pain disorders and advance research for the conditions.
In addition to Donnellan, the clinic is staffed by doctors Ted Lee, Suketu Mansuria and Noah Rindos. The four have strong ties at UPMC Magee-Womens Hospital’s minimally invasive gynecology program. Lee pioneered the hospital’s minimally invasive surgical program. Mansuria trained with Lee; Donnellan trained with Lee and Mansuria; and Rindos trained with all three.
The new clinic embraces a unified team approach to patient care, providing patients with the opportunity to meet with gynecologists, psychiatrists, physical therapists and surgeons during the same appointment, helping to begin treatment sooner.
“There are so many different elements that contribute to pelvic pain conditions,” said Donnellan. “Many women have been told for years their pain is all in their head. Others have undergone unnecessary treatments or had poor pain management. Others have been completely dismissed by their gynecologists. The opportunity to meet with a comprehensive team of pelvic pain experts, who work together in developing a diagnosis and treatment plan, is a huge relief to these women.”
Said Mansuria: “By the time patients get to us, they are extremely frustrated. They’ve been told the pain is psychological. The peace of mind they experience when their condition is diagnosed and they begin recovering is extraordinarily humbling.”
Symptoms of endometriosis include pain during a period and intercourse, generalized pelvic pain outside of the menstrual cycle, and unexplained infertility. Because it can’t be detected with imaging equipment, the only way to definitively diagnose endometriosis is through exploratory surgery.
“When a person suffers an asthma attack and can’t breathe, you don’t tell them to deal with it,” said Mansuria. “But so many of the women we see are truly suffering in their day to day lives. Their relationships suffer because physical intimacy is painful. The heavy bleeding and pain they experience means missed work days and has a tremendous psychological impact.”
According to Rindos, the idea of a “bad period” has become so normalized that when women with heavy bleeding and excruciating pain seek help and support, they are routinely dismissed. But there’s nothing normal about pain and bleeding that interrupts daily life, he said.
Dr. Donnellan gave me my life back ... I was so relieved when I met Dr. Donnellan and learned this wasn’t all in my head, and there was something we could do about it.
Hilary Flint struggled for nine years before she met Donnellan.
“From the time I started menstruating, I was in excruciating pain. I had horrible cramping and uncontrollable bleeding. I didn’t believe I could possibly be having the same experience as other women, but that is what I was told—this was just part of being a woman,” said Hilary.
When she was 19, Flint came to UPMC to have her gallbladder removed. Her surgeon suspected it might actually be endometriosis causing her pain, and called Donnellan for a consult. Donnellan confirmed the diagnosis and immediately began working with Flint.
Beginning with pelvic floor physical therapy and working through two laparoscopic surgeries, Donnellan ended up prescribing a combination of birth controls that managed the majority of Flint’s symptoms—enough so she could finish college and start her career.
“Dr. Donnellan gave me my life back,” said Flint. “For 11 years, I had at most one good week a month. I wasn’t comfortable making plans with my friends or family, and my pain problem turned into a depression problem. I was accused of being lazy and told I had to toughen up. I was so relieved when I met Dr. Donnellan and learned this wasn’t all in my head, and there was something we could do about it.”
Along with researchers at Magee-Womens Research Institute, Donnellan is work on a better understanding the pathology of endometriosis and how it progresses, with hopes of eventually developing targeted treatments.
“Someday, we’d like to have a blood test to detect endometriosis,” said Donnellan. “But we need to understand the pathology of the disease first. We know it’s an inflammatory response of the immune system. A blood test would help us understand earlier what treatment direction to go in.”
For now, the doctors are committed to helping women by diagnosing the cause of pelvic pain earlier, and coordinating the appropriate physical and mental health support to improve lives.
“It’s rewarding to work with women I can truly help,” said Rindos. “We are able to improve people’s quality of life and help them achieve their dreams, whether those dreams include starting a family or progressing in their career or feeling comfortable pursuing a relationship. We help people live the lives they want, and it’s fantastic.”