Throughout her teen years and into her mid-20s, Sabrina Sarro had significant menstrual pain the first two days of her period each month, though it wasn’t debilitating or concerning enough to seek treatment aside from over-the-counter pain medication.
That changed nearly four years ago, on May 1, 2021.
“I woke up that morning with severe dysuria, which is when you feel burning when you urinate,” Sarro said. “That’s when my journey to getting a diagnosis began.”
Sarro, a pelvic pain psychotherapist and full-time doctoral student from Long Island City in Queens, New York, said she’s seen nearly fifty healthcare providers and has spent about $40,000 these past four years trying to find solutions to her growing list of symptoms.
“I started with dysuria,” Sarro said. “But then it became more pelvic pain, labial pain, clitoral pain, pain during sex, burning in my legs and feet, and musculoskeletal pelvic floor dysfunction. It kept spreading. Every year, things progressed negatively.”
Each time Sarro visited a new doctor, she took a new test or received a different answer.
“I’ve had several MRIs, CT scans, cystoscopies—basically, every test you can imagine,” Sarro said. “Sometimes they said it was in my head. Or that it was vulvodynia. Or that it was something else. Or that they just didn’t know.”
Though the burning Sarro has felt throughout her body isn’t a common endometriosis symptom, she found a physician late last year who suspected she might have the disease. A laparoscopic excision surgery in January revealed the physician was correct. Sarro’s endometriosis was between stages one and two.
“They found it on my bladder and on my hypogastric nerve, which is the nerve that governs my bladder and rectum,” Sarro said. “They found it on my rectum, as well.”
As a pelvic pain psychotherapist who works with endometriosis patients, Sarro knew about the disease. However, she didn’t suspect she had it because of the location and type of pain. And she’s still skeptical that endometriosis is the cause of her pain.
“I know it can take time to heal—they said I need to wait about three months—but I’m still burning when I urinate,” Sarro said. “I’m glad they went in and removed the endo, but I just don’t know if that’s what was causing these symptoms.”
Whether or not endometriosis is the cause, three things are certain: Sarro has the disease, she saw nearly fifty healthcare providers before someone diagnosed her with it, and she’s still in pain.
“I’m a Black person, a queer person, and I’ve experienced a lot of anti-Black medical racism, a lot of gaslighting, and a lot of medical PTSD navigating of systems, costs, time off, and personal upheaval,” Sarro said. “I've done three nerve blocks, spent thousands on acupuncture, have taken out loans to cover costs that insurance will not cover. I work tirelessly just to be able to keep my head above water. I'm exhausted. I'm devastated. I'm haunted by the grief of all of this.”
Many endometriosis patients share their story after they’ve found a solution—temporary or otherwise—for their symptoms. Sarro wanted to invite readers on her journey now so they can learn from what she’s already been through and continues to experience.
“Find providers who deeply care about you. Do not settle,” Sarro said. “Find a good therapist who will honor all your identities, cheerlead for you, and run the marathon with you. Take it day by day and keep going.
“I get up every day, go to work, try to work out, see the providers that I can, drink a lot of water, cycle through different medications, and try different things like nerve blocks and creams,” Sarro continued. “This has affected all parts of my life. It’s hard to travel. It’s hard to think about children. It’s hard to think about what’s next. I just do the best I can and claim as much joy as possible.”
*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
