Living With a Disease That Feels Like a Never-ending UTI

By as told to
Photo: TomFoldes/Getty Images/iStockphoto

Interstitial cystitis, or IC, is a mysterious, painful bladder condition with no known cause or cure. Patients typically experience symptoms resembling those of a urinary tract infection, minus the actual infection: the burning, the urgency, the constant need to pee, the overall pelvic pain and discomfort. The condition is often misdiagnosed — and is typically considered only after all other bladder issues have been ruled out — but by one estimate, up to 12 percent of women may have some symptoms of IC.

One of them is Simone Gorrindo, 34, who’s lived with IC for half her life. Below, she shares what the past 17 years have been like, including painful sex, strict diets, and the calculus that goes into never being able to stray too far from a restroom.

It started out with UTI symptoms: the pain and the urgency that comes with having to go to the bathroom, the burning sensation. I had to go to the bathroom a good bit more than your average person, and I experienced the need to go to the bathroom and I wouldn’t be able to go. And then it changed: After a few years, it became more like a deep ache in my lower back and down my sides, like a pelvic ache that was deeper and more disquieting.

The way it began was, when I was 17, I left high school early and I went on a backpacking trip to Europe, and I got a UTI right before I left. I just kind of willed it to go away for a while as we were traveling — I think because I was so young and so broke, I didn’t really do the things I needed to do to take care of myself, to get to a clinic immediately. Eventually, I did go to a clinic in Switzerland and I did get mediation, but it didn’t really seem to do the trick of getting the UTI out of my system.

After that, I moved to New York to go to college, and the symptoms just persisted. I just kept getting diagnosed, every time I went to the doctor, with recurrent UTIs. When you have a UTI, they’ll do an initial culture where they’re looking for the presence of white blood cells in your urine, which are a reaction to the bacteria. And I always had that, which is super common with IC patients. So even though they sent things to the lab and they came back clean for bacteria, they just kept treating me with more and more intense antibiotics. That went on for literally all of college, and it became clear that it wasn’t getting cured by antibiotics, but I wasn’t getting a diagnosis for what it was.

One of the main things it affected for me was sex. Sex was painful. It was kind of like sandpaper tearing at my insides, and burning, and also these trigger points — he’d go too deep, it would cause this isolated point of pain that would then reverberate out. What happens with IC is, your pelvic floor is overactive. It tightens to compensate for that feeling of having to go to the bathroom all the time.

So sex, for me, became associated with pain at a young age. I was in my first real relationship at the time when I first got the symptoms — we’d gone to Europe together and then we moved to New York together — and there were a lot of factors that went into the breakdown of that relationship, but one of them was that we were young and we didn’t know how to handle the fact that sex was challenging. It was difficult because I didn’t know what was happening: I went from being able to have sex to it suddenly being quite painful.

I think it affected just my experience of intimacy in general. Because my first boyfriend didn’t deal with it well, it made me wary of sharing that information. Ultimately, it kind of became a source of shame. For a few years between then and my next serious partner, I just had casual things, and I did not tell them about the pain. And I think that contributed a lot to the fact that drinking was part of my experience of sex: It helped physically numb the experience, and also the emotional experience of intimacy becoming challenging.

However, there were some instances when I had to share, times when I was in a tremendous amount of pain. There was one instance where I was in so much pain that the guy just left — not in an asshole way, but he was like, “You probably want to be alone with your pain.” I never went out with that guy again. It freaked people out when I had to share. When I started dating my husband, Andrew, he already sort of knew my whole backstory — we’d been friends at first — which was helpful when we ultimately did have sex.

I don’t think it affected my social life greatly in those first four years, but it should have. I should have been taking better care of myself, but I got so frustrated going doctor to doctor to doctor and not getting an answer that I just went into let’s ignore this mode, to be a normal 20-year-old in New York. I was going out way too much and staying out way too late, and paying for it in feeling worse and worse and worse. So there’s no question that I’m responsible for making my symptoms worse during those years.

And then it did affect my social life, kind of abruptly. I had learned to live with a level of pain that was a low simmer, but it suddenly took a turn when I was 21 where it got a lot more debilitating. It was like my body was saying, “You cannot ignore this anymore.” That radically changed my social life: My friends who were partyers kept on partying, and I stopped. My life got suddenly small and quiet, and the people in my life who were moving on to careers and relationships, their lives were getting bigger and expanding while mine was kind of doing the opposite.

Getting a diagnosis felt weird and good. Weird in that it was so easy for a doctor to be like, “Oh, this is clearly what you have.” I’d been going to doctors for four-and-a-half years in search of a diagnosis, and then I found this specialist, and it was so easy for him to see that that’s what I had. So that was a shock to the system. I also felt like I’d somehow failed, like I should have been able to find the right specialist earlier. So there was part of me that almost felt bad, and then I felt really bad for the way I’d been treating my body. But it was also exciting, like I suddenly had a path forward, and then it was incredibly daunting because I had to find a way to get health insurance, and I had to radically change my entire life.

I never thought it was all in my head like some doctors suggested, but I did worry that it was a symptom of anxiety, or that possibly my own mind was contributing to my inability to get better. But then I would have a bad flare or bad day, and it felt so completely out of my control that I just couldn’t imagine that it was in my head. So mostly I was incredibly frustrated with the doctors. My feeling was like, How are you specialists if you don’t understand this? It changed my whole understanding and experience of medicine in general, which is that doctors are limited people just like the rest of us.

At a certain point, I didn’t think I would find a diagnosis. I came to a point where I was like, Something is terribly wrong with me, but no one’s going to be able to name what it is. I guess that’s just the mystery of the human body. I thought it was just this thing I had to live with and had no name for, which was particularly frustrating because if you have no name for something, no one believes that you’re suffering. So I think having a name for it was a huge turning point. I was at such a low point in my life in every way, and having a diagnosis with some kind of management plan gave me a reason to climb out of it. I left New York and I went back to California, where I’m from, and I moved in with my mom. I got county-run insurance and just took time off from working for a few months, and really concentrated on getting better.

I went back to California for almost a year, and then I went back to New York and was living much more healthfully: I got a nine-to-five job and was going to bed at ten and getting up at six every day, and just had a very routine, organized existence. I didn’t drink coffee, almost never drank alcohol. That was the period of time during which I would say the IC affected my social life the most because my oldest friends in New York, I basically didn’t see most of them anymore.

As I’ve gotten older, though, I would say more than socially, there have been times when it’s affected my career. I ended up going to grad school in New York, for journalism, and I had this professor who used to say to me, “When you hit it, you really hit it out of the park, but other times it just dribbles.” Essentially, he was saying that my work was inconsistent, and there were a lot of reasons for that, but one was my health. I would work myself to the bone, and then I would hit a wall where I couldn’t anymore because I was in pain. When I started working as an editor afterward, I had the same problem in my career: I could work really hard and do great work, but I couldn’t pull off the 80-hour workweek that was necessary. Or I could do it, but my health would suffer and then I would drop the ball on things.

And just living in New York became really hard. I couldn’t have physically dealt with the strenuousness of living there long-term. Sometimes when your bladder’s bad, literally just a walk down the street to go get a few groceries is really tough. Eventually, I did leave: My husband is in the army, so I moved with him to Georgia, and now we live in Tacoma, Washington. So my move wasn’t because of my health, but at the time, things were getting bad enough that when I told my boss I was leaving, he thought I was going to tell him I was going to take medical leave.

I always have symptoms. Some people with IC go into remission, but I always have the urgency, always have to go to the bathroom fairly frequently, always have a little bit of pain. The acute, debilitating flare-ups — they can happen every three months, maybe. But it’s very varied: Sometimes it happens every six months, or it might be every month. It’s been particularly bad recently because I’m pregnant, which some people say brings relief of symptoms and other people say makes them experience worse symptoms.

But that really deep, intense, aching pain, I haven’t had probably in years. I used to be on a pain-blocking medication called Elavil, which is an old antidepressant that’s used now at low doses for things like migraines, and that was the only way I could function. I was on that for almost ten years, and I’m now able to function without it.

My bladder is not as sensitive as it used to be, but the legacy it’s left is a lot of issues with my pelvic muscles, which creates urgency and pain and even sometimes burning. But you can do internal physical therapy where they massage the vaginal walls and use dilators to relax the pelvic floor, and also massage trigger points. It’s almost like massaging knots that you would have anywhere else in your body. My husband learned how to do that to an extent, and sometimes he will do that before sex and it helps quite a bit. It also helps with urinating.

So I think working more than ever on those muscles in physical therapy, and also going to yoga, is probably my biggest form of management. Really trying to relax and prepare for sex helps — I can’t be quite as spontaneous — and also being with a partner who knows me and my body really well, and knowing what areas and trigger points for avoid. I’m working from home, so that helps.

And I just try to take good care of myself. I avoid lots of foods: The big ones are alcohol, coffee, tomatoes, tomato sauce, oranges, chocolate, cultured stuff like sour cream and yogurt, food with nitrates like salami or hot dogs. The list goes on. Giving up alcohol was hard, but coffee was harder. And giving up oranges was very sad. I really miss orange juice — I haven’t had orange juice in like ten years. I’m less rigid than I used to be, though. I had a doctor who said, “If you want a piece of chocolate, have a piece of chocolate.” You kind of know how much you’re going to pay for something, but it’s really hard to stringently follow that diet for your entire life.

I know what my limits are. It’s different for different people, and one thing that might bother me won’t bother another person. I haven’t had my period now in so long because I have a toddler, didn’t get my period back, and then somehow got pregnant again, but when I had it, my symptoms really formed around the rhythms of my menstrual cycle. During the PMS period, it gets really bad, and then it kind of chilled out afterward. I could eat something after getting my period that I couldn’t eat beforehand. You learn these tricks that you don’t really know at first because it takes so long to get to know the effects of this on your body. It takes years to figure it out.

Living With a Disease That Feels Like a Never-ending UTI