Endometriosis research is the focus of a new hub at Pitt

Since 2016, Allison Vorp couldn’t make sense of a chronic, worsening pain in her lower right abdomen.

“It was this severe, sharp shooting, pinching pain,” she said. “It started to be that it was my constant companion — it was always hurting.”

Explanations ranged everywhere from ovarian cysts and hip arthritis to irritable bowel syndrome. She dieted, eliminating and reintroducing major food groups to see if it would make a difference. 

It didn’t, and it wasn’t until her 40s that Allison, a research administrator at Pitt’s School of Medicine, thought to mention one more possibility to her gynecologist — endometriosis. 

Endometriosis is a condition where cells that line the uterus start growing outside of it, mainly on the ovaries, fallopian tubes and supporting ligaments and tissues that line the pelvis. Symptoms include painful periods, heavy bleeding, severe menstrual cramps, chronic pain in the lower back and pelvis, pain during or after sex, and infertility. 

Because of these varied symptoms, endometriosis is often the last to be considered compared to other potential causes, even though it affects roughly one in ten women worldwide. 

Allison’s doctor sent her to UPMC Magee-Womens Center for Endometriosis and Chronic Pelvic Pain (CECPP), where she met former Pitt surgeon Ted Lee, who had seen her for less than 10 minutes before he suspected she had stage 4 endometriosis. 

Around the same time Allison was searching for answers, incoming PhD student Isabelle Chickanosky was searching for a faculty mentor in the Swanson School of Engineering’s Department of Bioengineering, hoping to study that same disease — something she has endured since she was 16 years old. Her search led her to David Vorp,  senior associate dean for research and facilities at the Swanson School of Engineering and director of Pitt’s Vascular Bioengineering Lab (VBL) — and by coincidence, Allison’s husband. 

“I had this huge passion for endometriosis, but at the time, Dr. Vorp didn’t do any research in the field,” Chickanosky said. “For months, I sat on this idea of, you know, do I want to go into a lab where I can focus on endometriosis? Or do I want to go to the Vorp Lab and learn something new?” 

Chickanosky decided to join the VBL, hoping to pursue endometriosis research after earning her PhD. Then, in fall 2021 when Allison was diagnosed with endometriosis, David remembered Chickanosky’s interest in the disease and her own medical history, and he immediately contacted her. 

“I eagerly went home to get all these papers I had set aside because endometriosis was still my passion project,” Chickanosky said. “Within the next few weeks, we scheduled hourly sessions to talk about this disease, about new research in the field, and build up what we wanted our own project to be.” 

Inspired by Allison and Chickanosky, David sought to learn what was being done at Pitt in endometriosis research, which led him to Nicole Donnellan and David Peters, both professors of obstetrics, gynecology and reproductive sciences. By joining forces, they realized that together they could move the needle on endometriosis research and care. 

The team created the Hub for Endometriosis Research (HER), which includes about a dozen interdisciplinary researchers and clinicians across multiple Pitt schools, including the Swanson School Engineering and School of Medicine, and the UPMC Magee-Womens Hospital and the Magee-Womens Research Institute. With five distinct goals — education, research, clinical care, advocacy and outreach — HER endeavors to become a comprehensive research hub that will tackle not only the science, but also the widespread lack of information about endometriosis among patients, clinicians and researchers alike. 

“The driving factor behind HER was my wife’s diagnosis and wanting to learn more about it but not being able to find much information,” David said. “That’s when I realized there’s so much more that needs to be done, and if no one else is doing it, why can’t we?”

Finding a better path to diagnosis

Endometriosis can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility. Individuals with endometriosis can experience debilitating pain that prevents them from going to work or school. Enhanced awareness could lead to earlier diagnosis, which may slow or halt the natural progression of the disease and reduce the long-term health care burden of the disease, but there is no known way to prevent endometriosis, and currently there is no cure.

According to Donnellan, the average endometriosis diagnosis period is eight to 11 years, and the only way to officially diagnose a patient is with an exploratory surgical laparoscopic procedure. The disease, she explained, is stealthy when it comes to traditional diagnostic procedures.

“There are no biomarkers for endometriosis,” said Donnellan, who is also medical director of gynecology at Magee-Womens Hospital. “There are no noninvasive diagnostic tests like a blood sample, endometrial biopsy sample or even a pap smear, and there are limitations in imaging such as CT scans or MRIs. You can have a normal ultrasound, normal blood work and a normal physical exam and still have a disease that is causing symptoms.” 

HER collaborators are studying tissue samples from these procedures, but surgery is expensive, and funding and affordability are some of the biggest challenges in studying endometriosis. To decrease the financial burden and the amount of doctor visits for patients, Chickanosky’s PhD dissertation work includes the development of EndoDx, a tool that would be compatible with gynecology offices and use machine-learning to predict a patient’s likelihood of having endometriosis. 

“It's important that we have communication between early-stage clinicians who are with patients in annual gynecology exams all the way up to our clinicians who are geared toward removing this disease,” Chickanosky said. "Patients should be under the care of those who understand their overall health early on as well as specialists who understand the disease itself.” 

Even before patients enter the doctor’s office, Chickanosky wants to make sure they are aware of endometriosis as a possibility and that their symptoms are validated. 

“A huge barrier for patients is not even knowing if they should be seeking help,” Chickanosky said. “As a patient myself, when I go online and I look for information about some of my symptoms and it’s not there, it makes me think it’s not that big of an issue and I start tearing myself down.”

Creating a community of awareness

Raising awareness about endometriosis is crucial, and knowing about it earlier would have changed the Vorps’ lives. Before even hearing about the disease, Allison went through four failed rounds of IVF trying to have children, which was best explained by “undiagnosed infertility” at the time. She remembers Lee telling her at her initial visit with him at the CECPP that if she had seen him back then, this may have been different. 

“Endometriosis is a very frustrating journey for many, many people,” Allison said. “From my journey in particular, when I look back and see that we landed in the office of a fertility clinic, unable to get pregnant, with multiple rounds of IVF that never resulted in a pregnancy, I feel like someone should have said: ‘Do you think this could be endometriosis?’”

For Allison and Chickanosky, community support has been a crucial factor in their personal journeys to diagnosis and recovery, and for managing the unpredictable chronic pain that still continues to impact their lives. Allison is hopeful that bringing a community of researchers together for HER will help individuals with endometriosis like herself and vastly improve treatment options.

“There is so much hope on many different levels for helping people who are suffering, whether it’s finding a faster path to diagnosis and treatment, a greater scientific understanding of the disease, if there’s something preventative we can do when we’re younger or finding a less invasive way to diagnose it,” she said. 

David Vorp is excited to get to work. HER collaborators have five different seed projects in various stages and are searching for starter funding from government, foundations and others, while looking forward to expanding this multidisciplinary group toward one common goal. 

“Bioengineers are very good at identifying a problem and uncovering the knowledge or therapies that would be associated with it, but the Hub for Endometriosis Research is not just me, and not just bioengineering.” David Vorp said. “Dr. Donnellan and Dr. John Harris provide critical links to patients, Dr. Peters provides a fundamental understanding of the disease process, Drs. Bryan Brown and Ioannis Zervantonakis provide additional bioengineered models and techniques, and collaborating pathologists, biostatisticians, cancer experts and more will complement our scientific approaches — the whole is truly greater than the sum of the parts in this case.”