Vanessa’s Story: Finding Answers After Years of Pain
Vanessa had been living with abdominal pain and cramping since she was about 13 years old. Again and again, it was dismissed as “just part of being a woman.” But over time, the pain became harder to ignore and eventually unbearable.
“I constantly felt like I was on my cycle and had persistent cramping and nausea,” Vanessa said.
She searched for answers for years, seeing about five doctors and undergoing X-rays, CT scans, ultrasounds, bloodwork, a colonoscopy, and other tests. Everything came back normal. Still in pain, she turned to her OB-GYN, who diagnosed her with endometriosis and recommended a laparoscopy.
Instead, that procedure revealed something far different.
“I went through with yet another procedure looking for answers, and I got them,” Vanessa said. “I did not have endometriosis, but cancer.”
After weeks of waiting while her tissue sample was reviewed by multiple hospitals, Vanessa was diagnosed with epithelioid hemangioendothelioma (EHE). The diagnosis was terrifying, but it also brought something she had been denied for years: validation.
“I felt terrified, but also relieved and validated that I had not made up the pain I was experiencing,” she said.
Vanessa quickly sought specialized care and scheduled surgery with a sarcoma specialist. She underwent an extensive operation that included a complete hysterectomy, removal of her gallbladder, three-fourths of her large intestine, liver tissue, rectal tissue, and half of her right diaphragm. The surgery left her with no evidence of disease, and today, nearly three years later, she remains without signs of recurrence.
Even so, life with EHE has not been free of uncertainty. Vanessa shared that one of the hardest parts is living with the possibility of recurrence and knowing there could still be cellular debris that may eventually regrow.
“I am grateful to be alive, but struggle with the idea that one day it may come back,” she said. “We are watching and waiting, but it’s hard not to have a plan. It’s hard to live with the unknown and hard to relate to other cancer survivors who have a more common treatment path,” Vanessa said.
Through it all, Vanessa has leaned on the people and companions who have stayed close by her side: her mom, dad, sister, and support dog, Daphne.
For others newly diagnosed with EHE, her advice is clear: “Find a sarcoma specialist!” She also wants people to remember that even though EHE is rare, “there are others like us out there.”
Vanessa’s story reflects something many in the EHE community know too well: long diagnostic journeys are not uncommon with this disease. Too often, patients spend years searching for answers before getting the care they need. At the EHE Foundation, we are working to change that by facilitating and funding impactful EHE research, raising awareness, expanding patient education, and helping more people get to an accurate diagnosis and expert care sooner.
