IT HAPPENED TO ME: I Had Appendicitis For 3 Years

I had been told by several doctors, at this point, that it was likely all in my head. I was a young woman, a high achiever, type A, Ivy-Leaguer, who probably was stressed and my body was shutting down.
Publish date:
January 29, 2014
health issues, IHTM, hospitals, chronic pain

Warning: There is a graphic image in this article.

As a kid I always had a somewhat irrational fear of my appendix bursting. It kind of came out of nowhere, because no one in my immediate family or friend group had ever, to my knowledge, had appendicitis. I can remember the occasional gossip in town that so-and-so had been rushed to the hospital with a ready-to-bust-open appendix, but it was never in any way directly related to me.

By the time I was in college, I had more or less stopped worrying about my appendix being a ticking time bomb, although if I did have the occasional bad gas pain, the thought certainly did enter my mind and make me squeamish. So, in the fall of my sophomore year when I woke up one morning in so much pain that I could hardly stand in the shower, I wondered if the nagging worry about my appendix all those years had finally translated into a nagging pain in my right lower quadrant.

In the defense of all the medical professionals who would misdiagnose me, it was a fairly atypical case.

While I had pain and nausea, I was never particularly feverish and even though I was in a great deal of discomfort, I did more or less carry on for several hours before finally going to the emergency room. I remember actually saying to the doctor, “I really think it’s my appendix," which he regarded with holier-than-thou indifference. It was after midnight before he sent me back to my dorm with a diagnosis of a kidney infection and a really strong antibiotic.

In retrospect, what happened next is very obvious: There have been multiple studies that show that, in some cases, appendicitis can be successfully treated with a course of antibiotics. I think I likely had very early appendicitis when I showed up in the ER. Why my abnormal lab work was construed as signs of a kidney infection, I remain uncertain, but I suspect that I fell victim to female college student diagnostics and since I didn’t have an STI and wasn’t pregnant, they chalked my symptoms up to lady malfunctions of the vagina persuasion.

This wouldn’t be the last time my age and gender royally screwed up my chances of getting a correct diagnosis.

Exactly one week later, I ended up in the emergency room again. I was severely dehydrated, having forgone solid food and most liquid for several days, and my pain had worsened. The antibiotics had done little aside from giving me a generous case of diarrhea, which wasn’t helping my situation at all.

At this point, I had started missing classes to lay in bed and cry. My roommate was startled, as I was more or less regarded as the emotionally solid one of the group, so seeing me doubled over in tears made her appreciate the severity of whatever illness I had.

The second visit to the ER, I had a slightly more compassionate doctor (a man, again, though he was a father which helped). He asked me how I knew it was worse than any other pain and I said, “All I’ve been able to do for two days is lie in bed and watch Barbra Streisand movies.”

“That is serious,” he conceded, and ordered a CT.

A new scan revealed what we thought was the culprit: an ovarian cyst. Relieved that at least my pain wasn’t “in my head” he sent me home with instructions for follow-up and some pain meds.

Within two weeks, I had dropped out of college, lost 20 pounds, and was considering drawing up a will.

Back home in Maine, I was not met with any more answers about my pain. I had exploratory surgery which did reveal a cyst in my fallopian tube. I spent a couple of weeks post-surgery believing my problem was solved and I would be able to return to school, but my pain returned, and with it a terrible little something called gastroparesis that kept me losing weight and nearly constantly nauseated. Not to mention I was depressed! Chronic pain, no matter the cause, is enough to make anyone a reclusive depressive.

It would be two more years, interspersed with several changes in location, relationships and doctors before I found a surgeon willing to go in again.

I had been told by several doctors, at this point, that it was likely all in my head. I was a young woman, a high achiever, type A, Ivy-Leaguer, who probably was stressed and my body was shutting down. I was told, because my mother was a known bulimic, that I, too, was probably eating disordered. I was told that because I had suffered abuse as a child, this was “probably my way of handling it” and “my body probably remembered a rape that my mind couldn’t.”

These were, of course, men telling me these things. Middle aged men with opinions and a degree that meant they could share them with confidence.

And in the end, it was a male surgeon I had seen on and off for several years who decided to put a rest to the mystery once and for all. During the three years I struggled with the pain, I had never truly wavered from my opinion that it was, somehow, my appendix causing all my trouble. I expressed this to the doctor and he said, “Well, you’re either brilliant -- or the most educated hypochondriac I’ve ever met." The result of the surgery would be the proof.

I remember waking up in recovery and turning to the nurse feeding me ice chips, asking breathlessly, What was it? Even before I was fully conscious, I knew they had taken something out.

He smiled, a little half grin. “It was your appendix,” and then, the words everyone always loves to hear, “You were right all along.”

Chronic appendicitis is rare; so rare in fact that many medical professionals actually refuse to believe it exists. But the pathology report, and the surgical findings, were abundantly clear: densely adhered, three times its normal size and angry-looking, my appendix had not been healthy for a very, very long time.

I lost a lot in those 3 years, but gained so much more: I learned how to advocate for myself, and have pursued a career in health literacy and patient advocacy. I met the love of my life and live in a wonderful community.

Although I am free of pain for the first time in years, I still have some residual symptoms that make it difficult to enjoy food, but I’m getting there. In the end, I did end up losing several dress sizes, which I’d be lying if I didn’t admit was, in the end, I guess a sort-of perk.

And, I learned to trust my body. To really listen. That’s not always easy, because like many young women, I didn’t grow up necessarily feeling at home in my bones. But my body held on when it was filled with infection, it repaired itself over and over again. It fought to survive and it fought hard.

After my surgery, the surgeon mentioned rather candidly that if it had ruptured, it would have blown out my intestine and I would have likely died of sepsis. My body lived in a constant state of infection for years, yet it held on.

I have such newfound respect and admiration and true love for my body, and even on days when I don’t feel like I look “quite right” or I want to get down on the size of my ass, or acne, or flat hair, I think, “Yeah, but this body fought for you to be standing here while you told doctors about what it really means to be a feminist.”

And you know, I will live out the rest of my life being thankful for the body I’m in -- the mental and physical fighter who lived.