Coming Together to Face Endometriosis: Two women’s stories inspire a new one-of-a-kind research hub
By: Gina Edwards
Endometriosis is an often-painful disease where tissue like that which lines the uterus — the endometrium — grows outside the uterus. Endometriosis affects approximately 11% of women in the U.S. aged 15 to 44, or about 6.5 million people.
Two stories of women seeking care for their pelvic pain converged to inspire the creation of a first-of-its-kind research collaboration dedicated to finding answers for millions of those suffering from endometriosis.
Uniting investigators at Magee-Womens Research Institute, UPMC Magee-Womens Hospital, and the University of Pittsburgh Swanson School of Engineering, the burgeoning Hub for Endometriosis Research (HER) aims to collaboratively pursue methods to better predict, diagnose, and treat endometriosis.
“A Light Bulb Went Off” – Allison Vorp’s Endometriosis Story
By the time she hit high school, Allison was getting used to carrying around Advil. It was a must — ever since she began to menstruate, Allison experienced debilitating pelvic pain. She knew it was severe, but she had no idea that it was unusual or why it was happening to her.
As she progressed into her late 20s and early 30s, Allison’s periods grew heavier, and the pain worsened. Around this time, Allison and her husband David started trying to conceive. Six months without birth control went by. Nothing. Then, fertility treatments — six cycles. Nothing. One course of In-Vitro Fertilization (IVF). Then another. And another. After four total rounds of IVF, various testing, ultrasounds, bloodwork, and sample analyses from David, the couple received a devastating result: undiagnosed infertility.
“My body couldn’t take it anymore. That’s a lot of hormones and shots and emotions. By that point, I was getting very close to 40. So, we just decided children weren’t meant to be for us,” says Allison Vorp, a Certified Research Administrator for the Office of the Senior Vice Chancellor for the Health Sciences at the University of Pittsburgh. “And we moved on. We started focusing on what life’s going to look like without children.”
Then, in Allison’s early 40s — a new pain on the right side of her pelvis.
“I started getting a pinching pain right where my right ovary is. Ovulation was a very painful time of the month for me, so I knew that it felt like ovarian pain,” Allison explains. “But transvaginal ultrasound didn’t show anything, so we just kept exploring what that pain could be.”
Allison started experiencing persistent GI issues and anxiety. Her right-side pelvic pain grew more severe, along with the gastrointestinal troubles. After discovering an esophageal ulcer during GI testing — caused by all that Advil — Allison began taking Pantoprazole, which gave her splitting headaches.
“Somewhere during that whole process, I started getting debilitating migraines. Migraines to the point that I couldn’t even sit up straight, that I was afraid to bring my head above my heart a couple of times because my head felt like it was going to explode.”
Potential diagnoses — and dead-end trips to specialist after specialist — continued. Each clinician proposed a different potential reason for the pain. Was it a body wall hernia? Crohn’s disease? IBS? Even hip arthritis?
“The symptoms really kicked up, and my flow got horrendous ... my flow got to where I was bleeding through onto my chair at work,” Allison says.
To boot, the pain in the right side of her abdomen had started to move toward the center. Allison’s ob-gyn suggested a hysterectomy.
“And I was starting to lean towards the hysterectomy. Just take everything out and let’s see if that makes it go away,” Allison says. “But in one of my last appointments with my ob-gyn, I asked, ‘Could it be endometriosis?’ And it was like a light bulb went off.”
“Unfortunate, painful menstruation” –– How Do We Find (and Miss) Endometriosis?
After talking with her ob-gyn about the possibility of endometriosis, Allison’s next step was visiting the UPMC Magee-Womens Center for Endometriosis and Chronic Pelvic Pain. The day Allison sought treatment at Magee, it just so happened that the doctor staffing the clinic was Ted Lee, MD, a globally renowned surgeon and endometriosis expert.
“My main message to any patient, but to women especially is this: be aggressive. Don’t stop, keep asking questions, and insist you know if something’s wrong with your body. Do not stop. Do not take ‘We don’t know’ for an answer,” Allison says.
It takes 7 to 10 years on average for patients to receive an endometriosis diagnosis; currently, the only definitive way to diagnose it is through surgery, and only about 40% of patients who undergo surgical diagnosis are found to have endometriosis.
Dr. Lee says that during his appointments, he pays close attention to details in the patient’s history and symptoms and employs a highly targeted physical exam that offers clues about whether the patient’s condition might be endometriosis.
“When you are able to do a very good, compartmentalized exam for pelvic pain, you can get a lot more confidence in terms of the probability of your diagnosis being correct,” Dr. Lee explains. “It also gives you confidence that if you take the patient to the operating room, you’re likely to find something.”
The rectal vaginal exam serves as a way to localize the patient’s pain by reproducing it at one of the most common sites. Dr. Lee looks for an instantaneous, visceral reaction. However, for many patients seeking evaluation for pelvic pain, this kind of internal physical exam is not always conducted. The challenge for busy providers, including ob-gyns and PCPs, is how to methodically approach patients with pelvic pain, given the wide array of reasons that it can occur.
“The presenting symptoms are so vague and all over the place. You can have normal blood tests, you can have normal ultrasounds, you can have a normal physical exam, and you can still have endometriosis,” explains Nicole Donnellan, MD, founder and director of the UPMC Magee-Womens Center for Endometriosis and Chronic Pelvic Pain.
Undergoing the pain consultation with Dr. Lee proved to be a major turning point in Allison’s search. During Allison’s visit with Dr. Lee in November of 2021, she nearly passed out from the pain during her internal exam; her response suggested endometriosis. But they would need to wait six more months to be totally sure — the first day she could schedule surgery was in April 2022. The pathology report following that surgery confirmed their suspicions — of Allison’s eight specimens sent, six returned positive for endometriosis. During surgery, Dr. Lee removed the areas where the endometriosis was the most severe — Allison’s uterus, fallopian tubes, and her left ovary. As it turned out, her right ovary — the one Allison had suspected the pain was coming from — had been pulled by the endometriosis into the center of her abdomen.
After five years of looking for answers, finally, a culprit. Allison’s recovery over time left her feeling better than she had in years. The pain subsided. And her anxiety evaporated.
“I was so used to living in that state of sort of high anxiety all the time. I have a lot of peace and well-being now,” she says.
For Allison’s husband, David Vorp, Senior Associate Dean for Research & Facilities at the University of Pittsburgh Swanson School of Engineering and Professor of Bioengineering, who had watched his wife go from specialist to specialist, only to be told that she just had “unfortunate, painful menstruation,” the endometriosis diagnosis was an answer to questions of pain and infertility that had plagued the couple for years. In fact, Dr. Lee suspected that the cause of the couple’s infertility over a decade prior was likely her endometriosis.
“That was heartbreaking to know that there was likely a solution, we just didn’t know about it,” Dr. Vorp says.
But Dr. Vorp decided to take the experience and put it to work. His wife’s diagnosis changed the course of his career in research — and that of a young graduate student who was also searching for answers.
"Teach Me What You Know” –– Isabelle Chickanosky’s Journey with Pelvic Pain
In the spring of 2021 — months before Allison would visit Dr. Lee at UPMC Magee — an undergraduate student named Isabelle Chickanosky interviewed to work with Dr. Vorp at the Vascular Bioengineering Laboratory at the University of Pittsburgh.
Like Allison, Isabelle was trudging through her own multi-year journey of searching for a diagnosis for her pelvic pain — a complex process that drove her desire to study endometriosis.
But Isabelle’s story began in her junior year of high school — a time she had her sights set on joining college cross country and track teams. During a routine run, a sharp pain in the left part of her pelvis stopped her in her tracks. It was so severe she temporarily could not stand or move.
“I did what I think all teenage girls do when they have some kind of pain that they think they can assign to menstrual pain. I said, ‘You know what? It’s normal.’ And I moved on.”
Fast forward two years — now a sophomore runner for Carnegie Mellon University, Isabelle was logging significantly higher mileage and balancing a limited college sleep schedule. The pain struck again. But this time, it was worse; Isabelle knew that something was wrong. The first provider she visited had her start birth control — a dosage that brought Isabelle in and out of depressive episodes. Concerned, Isabelle’s mother helped compile a list of physicians for her to see — including Dr. Donnellan at the UPMC Magee Center for Endometriosis and Chronic Pelvic Pain. Upon hearing Isabelle’s story, she recommended surgery to look for endometriosis.
“I tell people there’s nothing normal about saying you’re in so much pain that you can’t go to work, or you can’t go to school. That’s not normal,” says Dr. Donnellan. “I think it’s important to be believed.”
Isabelle’s surgery, which excised multiple lesions of abnormal tissue to be analyzed, relieved her pain initially. Her complex and continuing search for a potential diagnosis only drove Isabelle’s passion for researching endometriosis further. But, when Isabelle got a call from Dr. Vorp asking to interview to work in his lab, which historically worked on vascular biomechanics, regenerative medicine, and tissue engineering — she considered the opportunity:
“It was a hard decision because I didn’t want to give up endometriosis research and Dr. Vorp made it clear that it was not his area of expertise.” He encouraged her to consider other avenues. “I came right out and said, ‘You seem really passionate about endometriosis research, but I don’t do endometriosis research. You need to be passionate about your research to pursue your PhD,’” Dr. Vorp recalls. “I told her that if she was interested in vascular bioengineering, I’d love to work with her.”
However, Isabelle saw a mentor in Dr. Vorp and reasoned that she would be able to apply the knowledge she gained in his lab to work on endometriosis after her PhD. She joined the Vorp Lab in the Fall of 2021.
In November 2021, a couple of months after the semester started, Dr. Vorp’s wife Allison went to see Dr. Lee. As she prepared for surgery to confirm whether she had endometriosis, he began to investigate what is known about it and who was doing the best research in it around the world.
“I was really surprised and disappointed to find that not a lot of people are working on it and not a lot of funding was being put into it,” he says. “If endometriosis affected the white male, there would be all kinds of funding being put into it. The human impact of the of the disease is just mind-boggling.”
Endometriosis affects approximately 11% of American women aged 15 to 44, or about 6.5 million people. Dr. Vorp decided to dedicate himself to learning more about endometriosis from the expert who happened to already be nested in his lab: Isabelle.
He went back to her with a request: “I remember that you were interested in endometriosis research. Teach me what you know about it.”
“It’s an Investigation of Love” – The Hub for Endometriosis Research (HER)
Dr. Vorp and Isabelle began meeting regularly for one-hour brainstorming sessions to swap knowledge about endometriosis and its impact.
Isabelle shared details from her personal journey of searching for answers to the cause of her pelvic pain. It was a search that, like many other women’s, would continue even after her surgery.
“To me, it was an investigation of love for my wife and seeing what she went through,” Dr. Vorp says. “I just wanted to learn more about it and do as much as I can to help other women that are in her situation or will be in her situation.”
The duo began working together to connect current projects at the lab to their potential uses in endometriosis. For instance, a project using AI and machine learning to predict outcomes of patients with aortic aneurysms was reimagined as a diagnostic tool for endometriosis using patient surveys and other data.
“We started transitioning our machine learning models and algorithms that we were using for aortic aneurysms and applying them to endometriosis with some very Spartan data that we had our hands on to that point,” Dr. Vorp says. “Some of the preliminary models showed me that this had some great potential.”
From there, Isabelle represented the team in multiple pitch competitions aimed at developing commercializable products with the potential to make an impact in the health care field. The team won a grant from the Center for Medical Innovation, second prize at the Michael G. Wells Student Healthcare Competition, and first prize at the Clinical and Translational Science’s Virginia Kaufman Pain Competition.
Dr. Vorp credits Allison for the team winning the Kaufman competition — she provided a testimony they used for their video application.
“I tell her she won it for us — hands down — because it was such a powerful personal testimony that she gave that put a human face to the disease,” he says. “Without it, I don’t think we would have won.”
As they gained steam and funding, Dr. Vorp and Isabelle connected with Dr. Donnellan to explore her interest in collaborating with them. She excitedly agreed, as she had championed endometriosis research since arriving at UPMC Magee.
“The team they have assembled are the basic scientists that I’ve been waiting 12 years of my career to find that really care about this,” says Dr. Donnellan, who is also an investigator at Magee-Womens Research Institute (MWRI).
In fact, when she was formerly a fellow, Dr. Donnellan was already imagining ways to leverage the high volume of surgical candidates seen at UPMC Magee to advance endometriosis research. She devised a plan to establish a tissue registry or biobank for research — even taking on the task of transporting samples to be frozen herself.
“That was first and foremost on my mind as a fellow because I’m like, ‘This is like crazy. We need to capitalize on this at some point. Someone will want to study it,” she says. “I started [the biobank] myself. I would run the samples across the street [to MWRI] for a few years before I was too busy.”
But her lone wolf days were over. Dr. Donnellan brought fellow MWRI Investigator Dave Peters, PhD, onboard the team, as she had been collaborating with him on endometriosis-related projects for years. (Coincidentally, two decades prior Drs. Vorp and Peters had also previously collaborated — and played racquetball together — but had since lost touch.)
Now with members from UPMC Magee, MWRI, and the University of Pittsburgh, the newly formed team consisted of engineers, geneticists, cell biologists, immunologists, gynecologic surgeons, and other specialties. They envisioned a collaboration that would play to each member’s strengths while fostering novel insights and potential clinical applications through interconnected uses of the data.
“Having a bunch of people who are all motivated by the same problem is really helpful because you think about it through their lenses sometimes and vice versa,” Dr. Peters says. “It’s just fascinating to see how people with different backgrounds and different training approach similar challenges.”
The investigators developed a name for their unique group: the Hub for Endometriosis Research (HER) and began seeking funding opportunities. In a proposal developed for the Department of Defense — 20% of the military force now being women — the team, led by Dr. Vorp, outlined the organizational structure and transdisciplinary nature of HER along with five initial, interconnected projects addressing endometriosis.
“The way that all of this came together must be more than a series of coincidences,” says Dr. Vorp. “It seems destined that we were to create this HER team here and now.”
Once the HER team receives funding, it will activate several initial projects designed to address the critical and immediate need for early detection and accurate diagnosis of endometriosis and improve the understanding of this difficult-to-diagnose disease and its progression. The goal is to enable future development of innovative treatment options.
“The amount of energy committed to this grant application is very promising to me,” Dr. Donnellan says. “Even if this proposal isn’t funded, this team is here to stay.”
The $7 million grant is the current goal, but the HER team is united by a mission greater than a single proposal: supporting and honoring the journeys of those affected by this painful disease, and for those with chronic pelvic pain who are looking for answers.
“I’m motivated first by the love for my wife. Just knowing what she went through and trying to honor her, the experience that we had together, and the emotional and physical pain that she had,” Dr. Vorp says. “But also, with a large motivation of helping other women that are experiencing this and don’t have answers — so that women experiencing this in the future have solutions that did not exist when we were going through it.”
To learn more about the UPMC Magee-Womens Center for Endometriosis and Chronic Pelvic Pain, visit https://www.upmc.com/locations...
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