This summer, 30-year-old Erin Swisher will have a high-risk hysterectomy that will also include removing endometriosis and adenomyosis. She’s been through six surgeries, doesn’t know if this one will be the last, and admits she’s tired of this routine. But as a people person with a contagious positive vibe, the social media marketing manager from Des Moines, Iowa, is determined to turn her pain into others’ gain.
“I remember how alone I felt when this started, and I feel like I have a responsibility to share the knowledge I’ve gained with those who don’t know what’s happening to their bodies,” said Swisher, who has built a TikTok channel with 20,000 followers. “My faith gets me through a lot and helps me put a purpose to this pain. The pain is the hardest part of my life, and I can’t let it go in vain.”
Swisher was 16 when she first experienced pain and heavy periods. Those symptoms were sporadic until she was 19, when the pain became a daily occurrence and her periods were never-ending. She said Iowa’s OBGYN system is “not great,” something she witnessed firsthand as she bounced from doctor to doctor for the next few years seeking answers.
“Nobody could figure it out. Most of them said it was just part of being a woman, but my body wasn’t feeling good. I didn’t feel my age,” Swisher said. “When I was 21, one doctor said—without even diagnosing me or mentioning the word endometriosis—that my two options were to go on birth control for the rest of my life or get a hysterectomy. I couldn’t believe it.”
In 2017, Swisher was referred to an endometriosis specialist in Omaha, Nebraska, two hours west of her home.
“They did a laparoscopic surgery and found that I had stage IV endo, and it was on multiple organs. My doctor told me it was one of the worst cases she’d ever seen for someone my age,” Swisher said. “I thought, Wow, this is not in my head. I’m not making this up. My pain is real. Something is actually very wrong.”
The doctor went in again soon after the diagnosis to perform an eight-hour excision surgery.
“I had about two months without pain before I was in pain again,” Swisher said. “The doctors were convinced that it was my body trying to heal and assured me that I needed to give it time. I did, but nothing changed.”
Not wanting another surgery, though, Swisher pushed through the pain for seven years. She worked various jobs before going all-in with social media and creating the beauty, lifestyle, and fashion brand Erin Not Karen.
“I focused on my career, and I built a career that I was proud of,” Swisher said. “But in the summer of 2024, my pain got to such an unbearable place that I couldn’t keep going. I went to the ER and was getting fentanyl, which wasn’t doing anything—that’s how bad it was. My pain tolerance is through the roof, but I was to the point where I couldn’t live anymore.”
She returned to Omaha, where she had another diagnostic surgery to check for endometriosis and possibly cancer.
“Thankfully, there was no cancer, but the endometriosis was triple the amount that it was before,” Swisher said. “It was covering my bowel, my bladder, and was up on my diaphragm. It had grown back absolutely everywhere.”
Doctors scheduled another surgery to remove it all.
“They thought it would be a 10-hour surgery, but it turned out to be 15 hours,” Swisher said. “Every time they would go to remove it, they’d find that it was so much deeper than they thought. The recovery from that was brutal.”
She’d have another surgery 10 days later to remove a mesh lining doctors put in to minimize scar tissue from forming. She hoped that would be the end. It wasn’t.
“I had about a month that was pain-free, and then the pain came back from nowhere in September,” Swisher said. “That hit me like a train. How on earth was I still in pain after this massive surgery? And it was the exact same pain. The doctors said they’d never seen anything like it.”
Swisher underwent several tests, which appeared to show more endometriosis near her spine (behind her pelvis) and on her uterus and colon. She also had adenomyosis (endometrial tissue in the uterine wall). An oncologist reviewed her case and called her pelvis “angry.” Everyone agreed Swisher should have a hysterectomy.
“I’ll have a full hysterectomy on June 20, which is a lot to take in. I’m 30 years old, not married, and don’t have kids, so this is like taking a bullet in some ways,” Swisher said. “They told me it won’t take away all of my pain—I’ll have to do years of pelvic floor therapy—but the hope is that it takes away enough that my quality of life increases.”
At this stage, she’d welcome almost any level of improvement.
“One of the hardest aspects of having this disease is that it's invisible. You can look completely ‘normal’ to the public, but on the inside, you feel like you’re being ripped to shreds. It’s very hard for people to comprehend you are in pain, let alone the severity of it, when they can’t see anything wrong,” Swisher said.
“I just saw the oncologist the other day and had to go straight to work from there to give a presentation to 40 people,” she continued. “I love having my career accomplishments, but it takes a lot out of me when I’m in so much pain. Over the last three years, I don’t think there’s been more than one day in a row where I haven’t been in excruciating pain. I told a friend that I’m in more distress mentally when I’m not in pain because it’s so unfamiliar to me.”
All of this is adding more chapters to Swisher’s story, which she shares on social media and beyond to try to help others with endometriosis. She’s appeared on podcasts, Iowa TV news stations, and here with EndoFound. She also hopes to make an impact legislatively one day by changing or creating laws that will help women with the disease.
“I’ve done podcasts where the interviewers didn’t know what endometriosis was before we connected. I have friends who are dismissed by their doctors. One friend’s doctor didn’t even know the disease is outside the uterus. That’s why I’m so passionate about breaking the stigma behind this,” Swisher said. “A huge part of my personal brand and platform is talking about endometriosis because it’s nothing to be ashamed of and affects so many women. As someone who enjoys public speaking, I feel I’ve been given a voice to make real change happen.”
*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.
