[warning, this post talks a lot about the bladder and urine. If that’s not something you want to read about, I’d stop here…]
I’m surprised that in my 8 years of blogging, I haven’t told you this story yet. It took me some time to come to terms with my own internalized story with ‘invisible’ pain, and to really own my experience instead of minimizing and pretending it didn’t happen. For too long I associated pain with weakness, but now I realize how much stronger the pain has made me.
I was 21 when I first started experiencing symptoms of interstitial cystitis (IC for short) or painful bladder syndrome. I was new to chronic pain, and had no idea the long ride I was in for…
Also, it’s important to note my interstitial cystitis did not occur in a vacuum, I had digestive issues too, which you can read about here (but that’s a whole different story…)
What is interstitial cystitis or painful bladder syndrome?
Interstitial cystitis or painful bladder syndrome can be a very painful and chronic condition that can result in regular (often ongoing) bouts of painful bladder irritation. The irritation causes urination urgency and frequency, often severely impacting concentration, sleep, and quality of life.
By definition, “Interstitial cystitis, or bladder pain syndrome (also IC/BPS), is a chronic inflammatory condition of the submucosal and muscular layers of the bladder. The cause of IC/BPS is currently unknown and the condition is regarded as a diagnosis of exclusion. IC/BPS may be associated with urinary urgency, urinary frequency, waking at night to urinate (nocturia), and sterile urine cultures. Those with interstitial cystitis may have symptoms that overlap with other urinary bladder disorders such as: urinary tract infection (UTI), overactive bladder, urethritis, urethral syndrome, and prostatitis.” 
IC really impacts the quality of life for the person who has it, which is hard to understand unless of course you’ve experienced chronic pain yourself or watched someone you know go through it. Chronic pain means you never get a break; a break from thinking about pain, a break from feeling pain, a break from trying to figure out how to manage the pain, and a break from wishing that this wasn’t happening to you.
The quality of life for someone with IC can be comparable to someone with rheumatoid arthritis, chronic cancer pain, or a patient on kidney dialysis.
What causes interstitial cystitis?
While the cause of interstitial cystitis is unknown, there are several theories including:
- Defects in the epithelium (lining) of the bladder
- Bladder trauma
- Pelvic floor muscle dysfunction
- Autoimmune disorders
- Neurogenic inflammation
- Sexual abuse
- Lyme disease 
- B1 —Thiamine deficiency 
- Oxalate issues
Personally, I believe interstitial cystitis is strongly rooted in nutrition related causes: poor digestion, nutritional deficiencies, poor liver function, hormonal imbalance, inflammation, hypothyroidism, and low protein diets (vegan/vegetarian) as well as associated with a history of UTIs, antibiotics, birth control pill use, and chronic viral issues (as some studies suggest). 
According to Dr. Ray Peat, IC has to do with hormonal imbalance, “Interstitial cystitis involves an increased number and sensitivity of mast cells in the bladder, as a result of too much estrogen activity, or too little thyroid and progesterone.”
Symptoms of Interstitial Cystitis
The symptoms of interstitial cystitis and painful bladder syndrome are pretty straightforward in that they often mimic those symptoms of a bladder infection, but without the infection:
- Bladder pain
- Pelvic pain
- Urgency to urinate
- Bladder pressure
As I look back on what my own symptoms and pain felt like, I’d describe it simply like this: remember when you were a kid and you’d skin your knee real bad? Then your parents or the school nurse would wash it out with an antibacterial solution that stung like crazy?! That’s what IC pain felt like to me, a constant stinging and burning feeling whenever a tiny bit of urine touched my bladder wall. This constant stinging discomfort left me constantly headed to the bathroom to relive the pain. But the problem is your body is always producing urine! It’s like a slow drip of pain all day long that becomes much worse at night because that’s when urine becomes more concentrated and acidic causing more irritation to the bladder wall.
My Interstitial Cystitis (IC) Story
About 13 years ago I found myself having strange symptoms after a few urinary tract infections (UTI) in a short period of time. I think it was something like two in one month, meaning two separate rounds of antibiotics within 30 days or so.
After the infections were “gone” my symptoms were not. For the next year I noticed an increasingly sensitive bladder, meaning I felt the urgency to urinate a lot more frequently during the day, and even more at night, which was a pretty foreign experience for a 21-year-old who was used to sleeping like a rock.
That started a long decade of chronic pain and poor sleep (I had other issues too, related to digestion which you can read about here). While IC is bad during the day, it’s even worse at night. Eating a trigger food during the day sometime meant a sleepless night or 10+ trips to the bathroom.
The discomfort grew over time. On the worst days I’d be up all night not able to sleep because I constantly felt stinging in my bladder and that I had to pee. It made no difference if I had gone 10, 4, or even 2 minutes ago. Even the smallest amount of urine would irritate my bladder leaving me unable to fall asleep or get restful sleep, period. Occasionally I’d go into my doctor to see if I had another UTI, but they’d always come back clean, a dead giveaway of interstitial cystitis or painful bladder syndrome. A condition that according to the internet “can’t be cured”…
Taking over my life
Saying that interstitial cystitis was exhausting, is an understatement. It made my quality of life very poor. I couldn’t sleep most nights, and then I’d proceed to try to make it through my normal 40 hour workweek. I’d make so many trips to the bathroom I even was concerned someone would notice and be concerned I wasn’t doing my job. On the worst days, I recall finding a quite space at work to cry and wonder how I was going get through this.
Surviving nighttime was the hardest part. Several nights a week I’d end up sleeping on my living room couch because I couldn’t bare keeping my boyfriend up all night as I struggled with discomfort. Luckily, he was very supportive and handled it well, much better than I could have asked for.
I’d also get stressed out when I went on trips or getaways, especially in shared sleeping situations. I was never sure how many times I was going to have to get up to use the bathroom, and I was always concerned I would wake everyone else up. Because IC is an invisible source of chronic pain, it’s hard to talk about. I mean who wants to talk about invisible pelvic pain? Not me. It was easier to suffer in silence.
Because of all the research I’d done online, I never saw a bladder specialist (I felt like I knew all I needed to know about IC). When I read about the invasive testing, medications with crazy side effects, and in some severe cases – surgical removal of the bladder, it really freaked me out. None of that sounded remotely promising. I’ve always had a bit of a sensitive body, and I wasn’t willing to try things that might just make things worse.
I put up with the pain and discomfort…
My Ah-ha Moment
About 3-6 months into this bad bladder dream, I started to connect the dots between the foods I ate and the frequency in which I had to go.
At one point I noticed any time I ate bread or certain grains, my pain and frequency was significantly worse. Eliminating grains gave me about 15% improvement. I could go longer periods of time during the day without a trip to the bathroom, and my flares at night decreased slightly in severity (meaning I was only waking up about 4-5 times a night and not the dozen times I was used to). It was a promising and encouraging start to getting better…
I kept a bladder journal on and off for several years, always writing down what I ate when I had a good or bad day, well documenting my flares and creating my own version of the IC diet. Slowly I learned my trigger foods, some of the worst being…
- spices of any kind (the stronger the spice the more pain, pungent spices were the worst)
- dairy products (particularly lactic acid containing foods like yogurt and cheese were the worst for me)
- high potassium foods (most fruits)
- acidic foods: orange juice, lemon/lime, salad dressings, wine, kombucha, vinegar, etc.
- common food additives found in deli meats + salami (I was always checking the labels for anything that looked like it didn’t belong in my food)
- supplements in general (most of them, especially anything “detoxifying”), less supplementation was always better for me
- carbonated beverages
- high oxalate foods
- high histamine foods and histamine-producing probiotic supplements (especially bacillus coagulans and bacillus licheniformis probiotic strains)
While that doesn’t look like a long list, it makes for a highly restricted diet. Everything I craved or wanted to eat would mean a sleepless night. And whenever I was away from home and my food choices were more limited, I often felt the worst.
As time went on, the more I tuned in to my body the better I felt, but my diet was still pretty limited. At one time I recall my “safe” foods being butter, olive oil, meat (eggs, chicken, beef, turkey, fish), honey, homemade baked goods (like these) and some vegetables. But it was incredibly hard to maintain. I did the best I could and over time it got better, but this took years. Not weeks or months…
By about 3-4 years in I considered myself about 60% better. Sure, I still had rough nights when I ate something irritating and barely slept at all, but it was no longer controlling my life. I still however, had to be careful about what I ate if I wanted to sleep well, and I also still would wake up at least 1-2x a night to pee regardless of what I ate.
At about year 5, I discovered over-the-counter Benadryl (thanks Ray Peat)l and it’s ability to calm the mast cells in the bladder. I used very small dosages as needed on the bad nights to help me sleep. Benadryl however, is not without risk, so I used it sparingly (often only 1/4 or 1/2 a pill before bed just to take the edge off). It felt like a miracle to have something that helped, but I of course knew it was just a tool or band-aid to use while I strengthened my body and bladder naturally.
In year 6-7 of my battle with interstitial cystitis, I felt like my bladder was at about 75-80% normal, to a point where I didn’t even think about it too much anymore. I still woke up at least once every night to pee though. Something I hated so much.
In year 8 of my recovery, I discovered hair analysis to target my mineral deficiencies and nutrient excess as well and also explored the impact of chronic viral issues on my body. After a few months on my supplements I started sleeping through the night regularly for the first time in almost a decade. I was blown away and this is actually what inspired me to add hair analysis to my own nutrition practice. The food and supplemental changes I made had a huge impact and I now consider myself about 95-99% recovered.
In hindsight, I think interstitial cystitis is very manageable and treatable with a special diet (but then again I can only speak from my own severity of IC, I’m sure others have it worse off than me). I found a way to manage my symptoms pretty early on, which probably prevented more damage from being done to my bladder wall. The recovery though is not easy, and often involved a very restricted dietary regimen to get the pain and frequency under control. But I know it can be done, because I did it myself…
What helped me the most:
- Improving digestion! I’m convinced that poor digestion and IC go hand in hand.
- Eating well and eating regularly. I ate the most nutrient dense diet I could eat given my own pain triggers. As a nutritional therapist, this was extremely hard because some of the healthiest foods I wanted to eat were also the most irritating to my bladder. Sometimes I had to eat unhealthy foods just to get enough calories and keep my body going.
- Avoiding extreme diets – including low carb or vegan ways of eating.
- Knowing your body and your triggers. While you can get ideas on what worked for someone else, you must keep a food journal and do research on what flares you. It will differ from everyone else. There is no “one-size-fits-all” Interstitial Cystitis diet.
- D’mannose was helpful to soothe my bladder and help prevent UTI’s from happening in the first place.
- In the last few years I used small amounts of Benadryl to help me get some sleep on the worst nights.
- Targeting any nutrient deficiencies and excess with the help of hair analysis (something that helped me so much, I got trained in it myself!) I wish I had done this way earlier on in my recovery, I think it would have made a big difference.
- Small amounts of calcium citrate to help bind oxalates in the gut that irritate the bladder.
- Addressing any underlying viral issues (more on the testing for that here, and my favorite supplements for viral issues here)
- These test strips helped me make sure that slight changes in my pain were still the IC and not a UTI. This saved me from going to the doctor all the time…
- A low oxalate diet (avoiding high oxalate foods like leafy greens, beets, chocolate, strawberries and more).
- Understanding the role of mast cell activation and histamine in interstitial cystitis. I suspect this largely originates from chronic infections of histamine-producing bacteria.
While the pain was bad, it gave me crazy motivation to get better. The small gains I saw over months and years, fueled my passion for nutrition and natural healing. All the pain I experienced in my twenties is one of the reasons this blog exists in the first place – I survived and lived to tell about it! Now I can eat anything I want without any interstitial cystitis restrictions (I avoid certain foods because of food sensitivities that are not bladder or IC related). If I ever do get bladder irritation, which is usually only a few times per year which is usually from a mix of eating food with too many additives, I recover quickly from it (the next day).
The following are tests that can be helpful. I’m confident I could have felt batter so much sooner had I done these tests earlier:
- Organic Acid Test (OAT test) to check for candida and oxalates
- Hair Tissue Mineral Analysis to check for minerals and heavy metals
- GI Map to assess gut issues, specifically any overgrowth of histamine producing bacteria
For those of you who are still suffering with interstitial cystitis, I hope my story helps show you that healing is very much possible and within reach.
If you have IC, I’d love for you to share your story in the comments! What helps? What doesn’t help?