I Don't Have Interstitial Cystitis

October 5, 2019

 

CN: extensive discussion of bladder problems, urination, pelvic floor work and internal exams, dietary restrictions, food, descriptions of pain; mention of sex, various health problems, and PTSD. 

I have always needed to pee more often than anyone I know. When I was a kid, in addition to being a frequent bed-wetter, I also wet my pants whenever I laughed too hard and unlike most kids, I never grew out of the habit. My embarrassing attempts to dry and coverup my wet pants followed me into high school. 

Perhaps I’ve always had a weak bladder, but more importantly, I was taking my cues on how and when I should use the bathroom from all the people around me, who could easily go 3, 4, 5 hours without peeing, where I needed to every couple hours. I didn’t develop the ability to decide when to go based on when I needed to go, until late high school. 

 

For years, I suffered through jobs that needed me to work without interruptions for as long as possible. Even if my breaks were every two hours, I would frequently be spending that last half hour thinking every minute, can I wait long enough, or do I need to find coverage and go now? I also acquired the habit of drinking lots of water to help with what I later found out was POTS. The more water I drank, the better I felt, but the more I had to pee. 

 

After eight years in the working world, I had the opportunity to become self-employed and work from home. Suddenly, there were zero obstacles other than my own will power to get up from my seat to use the bathroom whenever I wanted to. I did so liberally so I wouldn’t be distracted from my work, and my average time between pee sessions at home was 45 minutes to an hour and a half. 


Do I Have a UTI?

 

Late in my second year of unemployment, I showed signs of a UTI. I once had a UTI turn into a kidney infection and never wanted to repeat that experience, so I quickly made an appointment with my doctor. I took the test but it came back negative. Confused, my doctor said they’d run some other tests but gave me antibiotics with the assumption that it was a false negative somehow. The symptoms seemed to go away. But a month later, they were back. I tried to kick it with lots of water, cranberry pills, and raw garlic, but the symptoms didn’t change. I took another UTI test which also came back negative but the feeling of increased urgency and frequency didn’t go away. 

 

It felt as if I had a low-level UTI all the time. Getting through an hour-long appointment without a bathroom break was sometimes difficult and painful. Waiting for intermission during a long show was a minute to minute torture. Once I had gotten to the toilet after waiting for so long, it would take several minutes for anything to happen. If I was in a busy public restroom feeling the pressure of all the other people waiting, it was even harder to go. I’ll save you the details but sex became unpleasant at best, painful or impossible at worst, and even during nonpenetrative sex, I lost a lot of sensitivity and found the experience irritating and uncomfortable. My life was regularly disrupted by these mystery symptoms. 

 

After several months with no change, my doctor tentatively diagnosed me with Interstitial Cystitis (IC), a fancy name for “chronic bladder irritation/pain.” 

 

After reading the handout my doctor gave me about IC, I got the distinct impression that no one really knew what caused it or how to get rid of it. It was the kind of thing that you were supposed to try a whole bunch of things until something worked and sometimes nothing did and there really wasn’t anything close to a cure. I could be experimenting with dozens of lukewarm treatments for years. 

 

My doctor recommended I start out by playing around with some dietary restrictions. I was reluctant because my diet is already quite restricted by my celiac disease and my limited physical energy for cooking and washing up but I did my best to cut back on a few of the trigger foods. My symptoms lowered slightly but never entirely went away and would sometimes suddenly get worse for seemingly no reason.

 

 Researching Treatments

 

With no further answers from my doctor, I took matters into my own hands and got online to do some research. There are risks to researching medical conditions when you’re not a medical professional, but for unusual conditions like mine, often the people with the best information were those who had actually been treated for it. I avoided sites that lacked citations, were overly vague, or sounded unreasonably alarmist, and after a few hours, I had accumulated a little pile of knowledge. 

 

First I discovered that in addition to Vitamin C rich foods like my handout referenced, foods high in potassium content could also be triggers for IC. I was taking a potassium supplement. Other vitamins and supplements in pill form could be triggers at well since they are typically highly concentrated and filled with preservatives.

 

I discovered websites that had long detailed lists of foods to avoid in managing IC-- much longer and more thorough lists than the hand out I had read. The website had lists of foods that irritated the bladder, foods that were a problem for some people but not others, and foods that were safe for most people. There were hundreds of ingredients on it. 

 

It took me a few weeks to resign myself to checking the IC list before putting literally anything in my body. To truly reset my baseline of symptoms, I only ate foods on the “safe” list, nothing on the “try it” or “caution” lists. 

 

My options were very limited: I couldn’t have anything acidic, so no lemon, lime, vinegar, or tomatoes; no spices, not even black pepper; most cheeses were out; my beverages were limited to water, milk, and a few herbal teas; if I wanted fruit I got to choose between apples and pears; any processed or preserved meat was out; and desserts were possibly the hardest of all-- milk, eggs, and sugar were all fine but finding pre-packaged desserts that did not contain fruit, chocolate, coffee, or cinnamon proved difficult. Vanilla became my new favorite flavor of ice cream and never had I been so thankful to find boxed food with the label “No preservatives!” on it. Oh, and of course, everything I ate had to be gluten-free. I silently advocated with the universe that my celiac disease should be canceled temporarily during this special diet. 

 

I stayed on it for several months and saw a little improvement. I was unclear what I was waiting for since I wasn’t sure if there was actual physical damage to the inside of my bladder that I was allowing to heal or I was trying to decrease inflammation or what exactly was happening inside my body. Occasionally I took a risk with food or made a mistake and did notice a drastic increase in symptoms. The diet was doing something. 

 

 

What if I Didn’t Have Interstitial Cystitis?

 

When I next saw my physical therapist Rachel, I told her I was going to see a urologist for the first time ever. Her interest was piqued and she asked me what was going on. I explained to her the way a faux-UTI had never gone away, how I had changed my diet, how my doctor thought I had interstitial cystitis. I hadn’t mentioned it before because I didn’t think my bladder issues could be relevant to my muscular-skeletal ones.

 

Rachel is a very easy going person and I don’t know if I had ever seen her get on her soapbox before that day, but get on it she did. 

 

Rachel pointed at me and said, “You do not have interstitial cystitis.” 

 

She explained to me that IC was rare, that she had treated dozens of patients with urinary problems that thought they had IC but in her experience, there had only been a few that actually did. She said IC was like the fibromyalgia of bladder issues, a catch-all for, “You have bladder problems and we don’t know why.” She said she could help me. 

 

She told me that IC symptoms are almost always tied to some kind of pelvic floor dysfunction, which can be triggered by any number of things: trauma, stress, injury, etc. She said that there’s a connection between your bladder, the muscles around it, and your brain, and if one of those three things gets off-kilter, it confuses the other two. My muscles might be squeezing my bladder due to tension, sending a signal to my brain that I needed to pee, regardless of whether I did or not. 

 

Pelvic floor work happened to be one of Rachel’s specialties so she asked me to consider letting her do an exam at our next appointment. 

 

I went home and did a little research about pelvic floor work. I found this really informative article that taught me what the exam would be like but it also talked about a more widespread experience of having a pelvic floor issue that no one knows what to do with; you have a problem that no one knows how to fix, you’re only given vague solutions that don’t work, and people think that you should just be able to power through your symptoms. For many women, that experience revolves around vaginal pain, but for me, it was my overactive bladder. 

 

 

The more I thought about the way Rachel explained the relationship between your muscles and bladder, the more my symptoms made sense. If I was stressing about needing to pee, I was clamping all of my muscles, making it worse, and then making it even more difficult to let go when I got to the bathroom. It would explain why the symptoms’ severity would sometimes change randomly regardless of my diet. It would explain the variety of sensations I felt around my bladder that I had struggled to describe to my doctor: like it was being pinched and poked sometimes at the bottom sometimes at the top, like shifting my body could put my bladder into the wrong position and trigger the pain, like sudden twinges of pain in random areas.

 

Then I started thinking about my life long history of frequent peeing. What if my pelvic floor had always been involved? What if I didn’t have a weak bladder but a body full of tension? Given muscle tension is a problem in just about every muscle in my body thanks to Ehlers-Danlos Syndrome, that seemed like a pretty reasonable theory. 

 

And as I read the article about the woman with endometriosis and the horrors of getting her annual exams done, I had another thought. Annual exams had always been a trigger for my PTSD because of the pain involved, and it wasn’t until a few years ago that I learned annual exams are not supposed to hurt. Sure, they’re not comfy or particularly enjoyable. But I learned from Erica Moen that if an annual exam hurts, there might be something going on that you should talk to your doctor about. I had never gotten around to doing so in part because I figured, if something was wrong, my doctor would have noticed that during the exam. What if my pelvic floor had been the cause of the pain all along? 


My First Time Getting Pelvic Floor Work
 
Two weeks later, I was back in to PT and I told Rachel that I wanted to go ahead with the pelvic exam. She had me put on a pair of baggy shorts, no underwear, which would give her the access she needed without my having to feel exposed or vulnerable. 

 

The process was surprisingly normal. Like the rest of my body, my genitals had become just a neutral, not-emotionally charged part that my physical therapist was working on to help me feel better. 

 

My insides were very tender. I recognized the patterns of muscle response that I have during massage. There’s the initial reaction that a tense muscle is being touched, then a tenderness, then resistance where the tension is deeper down, and then a few jerks as the muscle decides whether or not to accept this intrusion into its current state. It was painful, but like in massage, I was able to categorize the pain as a necessary evil for me to feel better. 

 

Rachel reached a spot that was so tense, it didn’t feel like she was pressing on a muscle, it felt like there was a small rock inside me. I recognized this sensation as a muscle that has hardened and turned in on itself after years of constant tension. As the muscles fought between trying to accept the pressure and pushing it away, I was overcome with a wave of empathy and self-love. 

 

“Oh, body,” I thought, “You have been hurting for a long time. I’m so sorry I didn’t know that you needed help. I’m sorry you had to wait for so long.” 

 

 

Rachel confirmed that I had a lot of tension in my pelvic floor and that when asked to flex those muscles, I had a very difficult time connecting to the muscles and exerting any kind of control over them. She said it’s very common for people with this kind of problem to mentally disconnect themselves from this part of their body, as a method of self-protection.  

 

Rachel explained to me a basic breathing exercise: I was to lie on my back with my knees bent, feet on the floor, focus my attention on my pelvic muscles, breathe in slowly, and imagine the muscles inside of me inflating gently like a balloon, and then breathing out slowly, imagining my muscles retracting back inside. She said I first needed to learn how to relax and develop an awareness of these muscles before I could strengthen them because, at the moment, my muscles were stuck in a constant Kegel, and I was unable to let go, meaning trying to strengthen my pelvic floor muscles now would make me worse. 


The Beginning of Progress

 

I committed to practicing my relaxation breathing techniques twice a day. The first few times I tried it, I felt a significant amount of release from the first 3-5 breaths, but then everything kind of shut down and stopped moving. I recognized this as how a traumatized muscle responds to being coached in new healthy movements. It’s too much change too fast and it stops responding. I took it slow and tried to avoid this shut down by stopping earlier or focusing on communicating safety and stillness to my body. I practiced focusing on one area of my internal muscles at a time, releasing each one, noticing which ones resisted the process more. 

 

I noticed improvements right away. That first week, there were multiple times that I got through an hour-long appointment without any bladder discomfort. I started to tune into the patterns my body was following that lead to the rise and fall of my internal tension. When I felt the urgency return and couldn’t immediately address it, I practiced relaxing rather than panicking. 

 

I started noticing that on particularly good days, after 5-10 breaths, I would feel a wave of comfort and contentment come from my muscles-- a message that my tired body rarely sends me. I was taking care of it and my body was noticing. 

 

I developed a theory that the reason for my sudden onset of IC symptoms was my transition to self-employment. My previous jobs had forced me to pee less often, but when I started peeing as often as I wanted to, my muscles had to work harder. The tension that was already there just got worse until it became debilitating. 

 

 

I learned that the reason my diet was relevant to this muscular problem was that any bladder can experience irritation to certain foods, and while that might not cause any permanent damage, an irritated bladder is a bladder that needs to be emptied more frequently. The more frequently you empty your bladder, the more work for the muscles surrounding it. If those muscles are already overworked and tense and angry, increasing the amount of work they do will just make everything worse. 

 

I started adding certain foods back in. I was no longer paralyzed by the fear of doing some kind of chemical damage to the inside of my bladder. I had a new baseline of health. I could tell when a food flared me up vs. when it just temporarily increased my symptoms. I could tell when I was pushing myself too hard and when I was taking the time my body needed. Sex became possible and enjoyable again. I was healing.

 

When I did finally go to the urologist, they confirmed what my PT had suspected: I was showing signs of significant pelvic floor tension and I wasn’t suffering from any unusual infections. They told me to continue the IC diet and my PT treatment and to see how things went. It’s unclear whether IC tends to happen in addition to pelvic floor dysfunction or other bladder issues, or if it’s a common misdiagnosis. The research around IC is still limited and confusing, as with many health issues that are particularly prevalent for women.

 

My diet is still very restricted, but I’m slowly expanding it. I have had days where I didn’t need to pee for 4-5 hours at a time-- an experience that’s been exceedingly rare at any time in my life let alone when I’m battling this new health problem. I also still have days where I have to pee every half hour. I have hope that with long term PT work and careful management, my bladder can be happier than it’s ever been in my life. 

Resources

 

Click here to learn more about interstitial cystitis

 

Click here for in depth information about the IC diet

 

Click here to learn more about pelvic floor dysfunction as it relates to IC and bladder issues

 

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