MY (IC)
STORY
What follows is an account of my interstitial cystitis (IC) episode. It includes a description of how it all began (diagnosis), an inventory of all the ineffective treatments I tried in my effort to fix it (hellhole), a synopsis of how I used mind-body syndrome (MBS) treatment techniques to overcome it (salvation), an analysis of why this happened to me (autopsy), and a few words of gratitude (eulogy).
My story is not special. It’s just another quintessential MBS recovery story. But I’m sharing it nonetheless because I know that there are people out there in need of just that.
Diagnosis
It all started with a nearly constant urge to pee. I was scurrying to the toilet roughly every hour, but I wasn’t producing much urine, and I’d feel like I needed to go again before I’d even flushed. It felt roughly like a urinary tract infection (UTI), but more nebulous. Not knowing what else to do, I repeatedly went to urgent care to be tested for an infection, but the results kept coming back negative and the “pee thing” didn’t go away.
When I described the situation to my gynecologist, she suggested that it could be interstitial cystitis (IC) and referred me to a urologist. My urologist ran a few tests to rule out infections and cancer and then diagnosed me with IC. She handed me a tacky sheet of paper describing my treatment options and prescribed me an expensive medication for overactive bladder.
That paper terrified me. It suggested that I’d have this problem for the rest of my life and that I might need to do unthinkable things to feel better, like stop eating onions and inject Botox into my bladder. So, for a time, I tried my best to ignore it. I took my drugs and tried to convince myself that they were helping. But, ultimately, the symptoms got worse. I began to have incessant pelvic pressure, electric-shock-like urethral pain, and pain after sex. For a while, I felt like I was constantly dribbling pee. So, out of desperation, I retrieved the paper from its hiding place and entered the IC hellhole.
Hellhole
I tried a lot of treatments in my quest to fix my pee problem. I started with the most conventional options, but as each new treatment failed to help, I became more desperate and more “open-minded” (i.e., susceptible to quackery). Below, I outline various treatments that I tried, categorized by medical specialty.
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The first treatments that I tried were the classic, urologist-sanctioned ones. I worked on my toileting posture, kept a voiding diary, and practiced bladder training. I had my pelvis imaged via MRI. I tried a bunch of drugs at a bunch of different doses, including off-label drugs approved for the treatment of overactive bladder (solifenacin, myrbetriq), allergies (hydroxyzine), and depression (amitriptyline). I also tried Elmiron (i.e., the one and only drug approved for IC) despite its horrifying risks (e.g., baldness, blindness), high cost, and low efficacy rate. The best of these drugs did little to nothing, while the worst had nasty side effects.
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When you are diagnosed with IC, you are told that certain foods may trigger your symptoms, and it’s recommended that you use an elimination diet to identify these foods. I, unfortunately, really took this to heart. I tried four of these diets, namely: the IC diet, the low histamine diet, the low FODMAP diet, and an antiinflammatory diet. As you can imagine, these diets were extremely time-consuming, frustrating, and alienating; and no other aspect of my IC episode haunts me like they do.
I was highly disciplined and systematic in my efforts, but I could never detect any correlation between what I ate and how I felt. I met with a dietitian who specializes in the treatment of IC hoping to identify some pattern that I was missing, but all she had to offer me was expensive testing of dubious value.
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One of the more popular IC origin stories suggests that IC is caused by dysfunctional pelvic floor muscles. I put a lot of stock in this theory. So when my first pelvic floor physical therapist (PT) didn’t fix me, I found another one with more accolades. To her credit, PT #2 was an excellent therapist; she made me feel seen and hopeful. I’d somehow be at ease even with her finger up my vagina pressing on a trigger point. (Yes, it is weird like that.) Under her wing, I was performing a series of time-consuming daily rituals to try to relax my pelvic floor. I did a stretching routine, zapped myself with a transcutaneous electrical nerve stimulation (TENS) device, and soaked my ass in a sitz bath each day. I bought a pelvic floor wand to do trigger point release at home. I began sitting on an electric heating pad during work and slathering on lidocaine cream after sex. All these treatments were moderately comforting, at least initially. But my symptoms persisted, so I did too.
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Another, more obscure, IC origin story suggests that IC is caused by leaky gut. I was very intrigued by this theory. I’d been diagnosed with irritable bowel syndrome (IBS; a comorbidity of IC) in my youth, and I’m a bit of a gut microbiome fangirl. So to check on my gut, I had myself tested for small intestinal bacterial overgrowth (SIBO), celiac disease, and gut inflammation. No dice.
I also did a gut-directed hypnotherapy program on the Nerva app, which aims to “fix the miscommunication between your gut and brain.” While this program didn’t fix my pee problem, it was rather impressive, and I’d definitely recommend it as a supplemental treatment for anyone struggling with IBS.
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Supplements are a big deal in the IC world. It seemed like every time I’d listen to an IC podcast or read an IC book or blog, I’d end up ordering another round of new ones to try. I tried IC classics (e.g., aloe vera, marshmallow root, L-arginine, collagen, Prelief®, Bladder Builder®), gut-supporters (e.g., probiotics, L-glutamine), anti-inflammatories (e.g., quercetin, fish oil, ginger), and stress reducers (e.g., magnesium, theanine, ashwagandha). I went to see a naturopathic doctor and she prescribed me even more supplements. Needless to say, the supplements didn’t fix me, and most were ultimately exiled to a sad little graveyard of half-used bottles.
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Of all the treatments I tried, the best was seeing a health psychologist. She encouraged me to meditate, take mindfulness breaks throughout the day, and practice self-compassion. One fateful day she mentioned that she was reading an interesting new book. That book was The Way Out and it would be my salvation.
Salvation
I had long understood that stress could exacerbate my symptoms, but reducing stress is easier said than done, especially when you believe that you have an incurable disease. I didn’t need another person to tell me to relax, I needed someone to teach me how to relax. The Way Out did just that. It helped me relax by teaching me to stop being afraid of my pain. After reading this book, I wasn’t immediately symptom-free and I was reluctant to let myself feel hopeful about yet another treatment, but I could feel in my gut that this was it.
I got to work again, bathing myself in mind-body media. Initially, I couldn’t find any bladder-related anecdotes, which made it hard for me to believe in my new diagnosis with total certainty. But I eventually found two things that got me over this hump: (1) I saw that Dr. Howard Schubiner listed IC amongst “conditions that are typically manifestations of MBS” in his Unlearn Your Pain workbook, and (2) I listened to Season 1 Episode 86 of Nicole Sachs’s podcast The Cure for Chronic Pain, in which she interviews a woman named Whitney Rydman about overcoming her IC.
For me, MBS treatment was a process. Learning about MBS (step 1) and convincing myself that there was nothing physically wrong with me (step 2) didn’t put an end to my symptoms. I also needed to cut stressors out of my life (e.g., the news) (step 3), teach my brain that my symptoms weren’t dangerous (step 4), process some emotions that I’d been stuffing down (step 5), start reintroducing the “trigger” foods that I’d been avoiding (step 6), and learn not to go apeshit in response to new MBS symptoms (step 7). These things took time, but as I began to convince my brain that it was safe, my symptoms subsided, and I knew that my IC’s reign of terror was over.
Autopsy
In hindsight, I can see the hallmarks of MBS all over my story. For example:
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There was abdominal pain and insomnia when I was small, irritable bowel syndrome (IBS) as an undergrad, and anxiety and an eating disorder in grad school. Along with the IC, there were bouts of intense fatigue, and post-IC there’ve been hives and depression.
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I’ve had a lot of UTIs in my life, so I’m certain that I’ve built up a robust neural pathway for feeling that type of pain. By the time I was nine, I’d had enough UTIs that my doctor did a cystoscopy on me to check in on my bladder. The scary procedure and painful aftermath haunted my young mind.
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My pile of stressors. I was going through some major life transitions. I had a new job in a new industry, which had me striving to prove that I wasn’t a complete waste of space. I had recently ended a 7-year relationship and was navigating the awkward dance of dating someone new. On top of that, I had an abnormal Pap that sent me down a multi-year shame spiral, and the COVID-19 pandemic was pushing me into hypervigilance overdrive.
My personality. I am a poster girl for the MBS personality type. I’m an anxious, excessively conscientious perfectionist. I have an obsessive brain, I’m constantly trying to fix things, and I’m quite hard on myself. I’m also a highly sensitive person (HSP).
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I went from being frustrated that I had another UTI, to anxious that I had something worse, to totally distraught that I had an incurable condition that wasn’t responding to treatment. Initially, I was relieved to receive a diagnosis because I thought that it meant that I could start addressing the problem. But the more I learned about IC, the more afraid I became. I came to be afraid of eating a “trigger food,” of straying too far from a toilet, of having sex, and, above all else, of never getting better.
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After I entered the IC hell-hole, I poured nearly all my spare energy into researching IC and anally testing treatments. I was constantly tracking my symptoms, desperate to find some correlation between what I did and how I felt. But, in truth, I was just looking for patterns where there were none, and this left me feeling deranged and hopeless.
Eulogy
It’s easy for me to feel angry that none of my doctors could help me fix my IC. I spent a lot of time, energy, and money on useless treatments and missed out on a lot of life while I was stuck in my hellhole. But, in retrospect, I’m grateful that the fix wasn’t that simple. Being sick compelled me to take a critical look at my lifestyle and make some meaningful changes. I learned to prioritize sleep; cut out alcohol, caffeine, and sugar; started buying organic food and “clean” products; installed water filters in my home; and got off the pill. Further, MBS treatment helped me to better understand myself and unpack some emotional baggage. Pain is a powerful motivator, and it seems unlikely that I would have had the drive to make these changes without it. I’m not saying that I would wish IC upon another person, but for me this illness was a much needed kick in the ass and I’m thankful to have been plagued with it.