Appendicitis is one of those health conditions that you know exists, you know it’s painful, and you know it can be dangerous. But it turns out that some rare cases of appendicitis aren’t as obvious as others. For instance, HGTV Home Town star Erin Napier said in a new interview that her perforated appendix went undiagnosed for a decade, despite it repeatedly causing issues and several trips to the doctor.
“In the beginning, it would be 24 hours of terrible stomach pain and a low grade fever, and then it would disappear,” she recently told People. “It became two days, then three.” At its most severe, Napier would be out of commission for a week at a time and had trouble moving without having any pain. However, several tests and CT scans didn’t suggest anything was wrong.
Finally, in 2014, Napier underwent an exploratory surgery on her ob/gyn’s guidance. The procedure revealed that her organs were bound together by scar tissue. Her doctor sent her to another surgeon who discovered she had a perforated appendix—it had been bursting and healing itself repeatedly for years.
“The first time it happened, when I was 19, it just partially ruptured,” Napier said. “Not enough to kill me, just enough to make me sick.” Her appendix healed itself and was covered in scar tissue that eventually spread “like a cancer” to cover her other internal organs, she explained.
If you have appendicitis, you’ll almost certainly know something is wrong.
Appendicitis is an infection affecting your appendix, a small, finger-shaped organ that projects out from your colon. It can become inflamed when a blockage leads bacteria to build up within the appendix, the Mayo Clinic says. Although the origins of these blockages may be difficult to figure out, some cases may be related to a gastrointestinal infection that enlarges the lining of the appendix, inflammatory bowel disease, or even parasites.
There is also a rare condition known appendiceal endometriosis, Jessica Shepherd, M.D., a minimally invasive gynecologist at Baylor University Medical Center at Dallas, tells SELF. The condition occurs when tissue normally found inside the uterus appears on the appendix, which can cause appendicitis and “cause someone to have pelvic pain for so long,” she says.
In most cases, appendicitis causes a characteristic pattern of pain: It starts around your belly button and gradually worsens and shifts to the lower right side of your abdomen. You might also experience a low-grade fever, loss of appetite, nausea, or vomiting.
“It’s usually not a subtle thing,” Mohamad Abouzeid, M.D., assistant professor in the department of surgery at NYU Langone Health, tells SELF. “You’ll get really sick. The pain gets worse and worse.” The pain often builds and builds until the appendix ruptures. If your appendix bursts, it’s a medical emergency and can be life-threatening. So if you have any symptoms that may seem like appendicitis, it’s important to seek medical attention to diagnose it early.
Appendicitis is usually obvious to doctors as well, but there are some factors that may make it more difficult to diagnose.
Doctors are often able to diagnose appendicitis pretty quickly with a physical exam, blood test, urine test, and imaging like an abdominal X-ray, ultrasound, or CT scan. But it can be hard to pick up in some rare cases, Mir Ali, M.D., a general surgeon at MemorialCare Orange Coast Medical Center in Fountain Valley, Calif., tells SELF.
“It’s unusual,” he says. “We have a lot of good radiologic studies, like CT scans, that are sensitive to picking up things like appendicitis. But it can be hard to tell if the appendix is behind the colon or in another location.” And it’s possible for the inflammation to come and go, which means an imaging test done at a time when the appendix isn’t inflamed wouldn’t suggest the appendix is an issue at all.
However, “this is very rare,” Bruce Yacyshyn, M.D., a professor of medicine in the Division of Digestive Diseases at the University of Cincinnati College of Medicine, tells SELF, although he has seen cases like this in the past.
Dr. Ali says he’s seen patients who have pain that comes and goes over time and had difficulty getting a proper diagnosis. “Women have had their ovary removed, thinking their symptoms were due to ovarian pain, and still haven’t gotten relief,” he says. “Then, when we take out their appendix, all of their symptoms go away.”
Above all, know that you shouldn’t have to deal with pain on your own, even if it’s somewhat mysterious. Check in with your doctor and keep checking in until you have the answers you need, which, unfortunately may take a while. “I have seen patients that, for years, that have had other issues in that area and nobody addressed the appendix,” Dr. Ali says. “When we take the appendix out, they have no other issues. It’s like a miracle.”