How I Healed My Interstitial Cystitis
How I put my IC into complete remission first by fasting, which made my symptoms about 50% better, then by adopting a zero-carb diet that allowed me to heal in ways I didn't know were possible.
[Please note: since this post is on a specialty topic, it did not go out to my substack subscribers, but was only posted to the web.]
Interstitial cystitis (IC) is characterized by chronic bladder pain, inflammation, and frequency. There is very little helpful information about what causes it and how to treat it. Medications don't help most patients.
IC is one of those baffling conditions that causes one to think: how can we be living in the age of modern medicine and there be so few answers for those suffering from this condition?
My IC Background
My story of IC began with frequent urinary tract infections in my twenties (beginning in 1996). I wish I would have kept track of the number of UTIs I’ve had, but it’s likely near 100.
I had numerous infections each year, sometimes monthly. After a few years of this, I started noticing that the bladder pain wasn’t going away after days on the antibiotics. So I’d go back to my doctor and they’d change my prescription from Macrobid (aka nitrofurantoin), the first UTI choice, to Ciproflaxin, the stronger option, in case the infection was persisting.
Yet, the pain still didn’t go away. I kept having all the symptoms of a UTI: constant bladder pain and urinary frequency. But when the doctor tested me for an infection, the test came back negative.
One of the most difficult parts about this particular type of pain was that it kept me from sleeping. This pain makes you feel like you need to urinate even when there’s nothing in the bladder. It’s hard to fall asleep with that feeling. It would sometimes take me hours to fall asleep, during which time I would get up and use the restroom three, four, or more times, hoping this would relieve my pain. It didn’t.
My doctor diagnosed me with IC and sent me to the first of many urologists I would visit. As we moved around and lived in different cities, I always researched the top urologists specializing IC. These urologists performed various tests on me to try to find the root of the problem. I had a CT scan of my kidneys and bladder to make sure there were no tumors or congenital abnormalities. Everything came back normal.
They blew up my bladder with water and placed a camera in there to check for lesions. They found chronic inflammation. This was in 2010.
The urologist attempted to treat me from various angles. At one point I took Elmiron for six months, as I was told it took several months to begin working. It was expensive but did absolutely nothing for my pain.
I was counseled to keep track of my triggers, advice I followed vigilantly. I knew exactly what my triggers were without having to keep a food diary:
Anything with caffeine was enemy number one. Caffeine can overstimulate even the healthiest bladder so it’s no surprise that I cannot tolerate one iota of caffeine ever.
Any kind of artificial sweetener: stevia, erythritol, monk fruit, aspartame, saccharine, you name it, it causes me terrible pain.
Sodas, even caffeine-free ones such as Sprite
Decaf coffee and decaf black tea. Although significantly less problematic than the caffeinated versions, the acid in these can still hurt at times.
However, triggers shouldn’t be confused with causes. A trigger’s only contribution is exasperate an already bad situation. I often walked around with a pain level of 4 on a scale of 1-10. A trigger would send my 4 to a level 6. But if I diligently avoided all triggers, which I did 95% of the time, I still had level 4 pain. The triggers weren’t causing the condition.
Things Get a Little Better for a While
For two years, I was put on a prophylactic dose of Macrobid that I took several times a week. The idea was that if I could go for a year or two without having an infection, that might give the bladder a chance to heal.
This scheme did work somewhat. Going two years without a bladder infection meant that my pain level was often registering around a 3. Frequency was also a little better.
I was aware of the side effects of constant antibiotic use on the intestinal microbiome, but I was in a desperate place. However, I knew I couldn’t take the antibiotics forever. So I went off them and my UTIs were only about 3-4 a year for the next decade.
Weight Gain Made My IC Get Worse
Fast forward to a year ago. My IC had flared to the worse it’s ever been. This could have partly been attributed to stress. In the three years prior, I’d had three very close family members pass away while my husband was going through a four-year unemployment crisis. We sold our home and were renting in another state. I put on quite a bit of weight.
But even though the three years prior had been so hard, a year ago, things were much better. My husband had finally found a solid, permanent job. We were settled into our new community, and I felt like I was working through the grief of losing family members. But even though my stress level was now way down, my IC was unrelenting. There were nights when I barely slept the entire night, maybe just nodding off for 30 minutes at most.
At this time, I began keeping Azo urinary pain relief tablets on hand (similar to the prescription pyridine; both turn urine bright orange.) I knew this couldn’t be good for me, but if I hadn’t fallen asleep by 3 am or so, I would get up and take these.
I would also take them if I had a fun event to go to, like going on a date with husband. It’s easier to ignore pain when you’re busy. But when I wanted to relax, it was pure heaven to get a few hours of pain relief and feel like a normal person.
I mentioned to my doctor how often I was taking Azo, and she freaked out. She told me how terrible all that dye was for my kidneys and that no one should take them more than a few times a year. But she had no other solutions for me.
A Wake Up Call
The most recent of my family members to pass was my dad. He had suffered from type 2 diabetes for about 30 years. In 2017, my sister gave him a copy of Dr. Jason Fung’s The Diabetes Code. He read it carefully, followed it, and completely reversed his diabetes to the point that his doctors took him off of all his medication because he showed no signs of disease. However, the 30 years prior had done permanent damage to his heart. He passed away from heart failure in January of 2022. (I explain how diabetes damages the heart in this post).
This chain of events made me frustrated. My dad had visited doctors for that entire 30 years and had never been told what Dr. Fung told him, which is that if you practice intermittent fasting and greatly reduce carbs, you will no longer be a diabetic.
Instead, my dad was told diabetes was permanent and given drugs. Another important thing that Dr. Fung said: if you don’t fast and drastically cut carbs, and if you rely on meds to simply manage the disease (they CANNOT cure it as dietary changes can), then diabetes will continue to damage your heart, your veins, your nerves—all things that happened to my dad.
The most frustrating part about this story is that if my dad had been told the correct info 30 years ago, he would have followed it and be alive today. I know he would have because as soon as he got the correct info, he did follow it.
My Decision to Change
After my dad passed, I dusted off my little Keto Mojo blood glucose/ketone monitor that I had from my keto diet days several years ago and took my blood glucose reading. Yep, I was prediabetic.
I took all my frustration at my dad’s story and decided I was going to channel it in a positive direction. I was going to spread the word about health, fasting, diabetes, and low carb. But, I had to fix myself first.
One of my health principles is that I never tell someone to do something that I am not willing to first do myself. At this point, I was only focused on reversing my prediabetes. I didn’t know what would happen with my IC.
I began intermittent fasting by doing OMAD (one meal a day). But after doing this for six months and losing no lbs or inches, I switched to alternate day fasting (ADF) on August 1st, 2022.
If you’ve never heard of ADF, you fast and eat on a schedule that looks like this:
On this plan, I lost 7 lbs the first week, and 17 lbs the first month. This was working! Since it’s difficult to burn that amount of body fat so quickly, especially since I wasn’t exercising, it’s likely that much of this weight was water retention from inflammation. Look at the difference just in my face:
My A1C went down to 5.0 (5.7 and above is prediabetic.) My fasting insulin serum went down to 4.1 (below 5 is ideal, although between 5 & 10 is average but not ideal). I was getting healthier.
Within seven months, I was down 45 lbs and feeling amazing. I lost 8 inches off my waist.
IC While Doing Intermittent Fasting
With this loss of weight and inflammation, my IC became 50% better. I’ve had one UTI in the last eight months since I started ADF on August 1st. That UTI was in October of 2022, just eight weeks after beginning ADF. I’ve been UTI-free for five months now.
As far as my eating went, I was practicing a principle popularized by Dr. Ted Naiman in his book The P:E Diet (The Protein to Energy Ratio Diet) to eat protein first to satiety. This meant that I was eating fewer foods containing carbs and sugar because of how satiating protein is.
My IC pain level dropped to around a 2 within a couple months of fasting. Eventually, my frequency became about half as bad as it used to be. When I was at my worst, I was using the restroom every 30 minutes (it didn’t matter how little water I drank). Now I could wait an hour, sometime a little longer.
But when December came, I’d been doing ADF for five months and I was down 35 lbs so I decided I was going to have a few treats. I had chocolate fondue on Christmas Eve, cinnamon rolls Christmas morning, etc. I also decided that I would take the week off of ADF fasting between Christmas and New Year’s while we traveled.
The day after I got back in town, I had an IC flare where I couldn’t sleep the entire night. My pain level was up at a level five, and I got up four times to use the restroom. I didn’t know if it was the sugar consumption or the break from fasting, or both. But it gave me a scare. I picked right up with my ADF fasting and I began eating so low sugar that I would go weeks without having any. My IC went right back to level 2 pain and frequency was better again.
Time for Another Diet Change
In January of 2023, my husband and I decided that I should start this Substack, and I threw myself into all kinds of health research, something the science nerd in me absolutely loves. Since I have numerous friends and family members with autoimmune disorders, this was one of the topics I began researching.
I began running into story after story of people who had reversed their autoimmune disease through going on a zero-carb diet. One of the most remarkable stories is Mikhaila Peterson (daughter of well-known Canadian psychologist Jordan Peterson). Mikhaila was dying of the worst case of rheumatoid arthritis her specialists had ever seen. She was on fifteen medications that had numerous side effects.
On her own, through the process of elimination, she discovered that an all-meat diet put her symptoms into remission 100%. She is now off all medication and thriving. You can listen to her tell her story here. (Note: I read her blog and she recently had a scare where she thought her symptoms were returning despite sticking to the diet, but then they found black mold behind a wall in their house, so they’re getting that removed).
As soon as I heard Mikhaila’s story, I wondered if an all-meat diet could do something similar for me. I kept reading more and more of these stories, but no one seemed to have an explanation for why a zero-carb, all-meat diet worked.
Dr. Anthony Chaffee, a doctor I follow, has been eating carnivore for fifteen years. He recommends it to all his patients with autoimmune symptoms. He says here that it has worked to reverse Crohn’s in all his patients who’ve tried it. He thinks it works because some people can’t tolerate the toxins, such as lectins and oxalates, in plants.
But that was just one theory. I kept searching for why this diet would work.
Well, good things come to those who research. I found a gem of a study on PubMed. In this study, researchers point to how a pathogenic bacteria called klebsiella is present in many people with autoimmune diseases:
The results of a large number of studies support the idea that an enteropathic pathogen, Klebsiella pneumoniae, is the most likely triggering factor involved in the initiation and development of these diseases. Increased starch consumptions by genetically susceptible individuals such as those possessing HLA-B27 allelotypes could trigger the disease in both AS [Ankylosing Spondylitis] and CD [Crohn’s Disease] by enhancing the growth and perpetuation of the Klebsiella microbes in the bowel.
After citing over 80 studies, the last sentence of the conclusion reads:
Dietary manipulation in the form of low starch diet intake can be included in the management of patients with AS or CD, especially when used in conjunction with the current medical therapeutic measures.
So there you have it. Scientific evidence for why going on a zero-carb diet heals many people with autoimmune. Although the researchers were focusing mostly on just Crohn’s and Ankylosing Spondylitis, it seems likely this research impacts other autoimmune diseases as well.
After reading this I immediately thought of my IC. What if I have something similar to a klebsiella bacteria that’s resistant to antibiotics and causing my problems?
Or what if the mechanism is that zero carbs so drastically reduces inflammation in the body that chronic inflammatory diseases disappear?
I don’t know. I don’t have to know. I began eating a zero-carb diet. After all, if I was going to recommend this to my autoimmune friends and family, I needed to walk the walk before I could talk the talk.
IC Results on a Zero Carb Diet
I’ve been doing strict carnivore for about two months now, with a few small, purposeful exceptions. I was afraid that my bladder had too much scar tissue after being inflamed for 26 years. Instead, it’s healing very well:
Here are some of my IC improvements that I never thought were possible:
Pain level is zero most days.
I slept through the night for the first time in decades a few nights ago. This doesn’t happen every night yet.
I watched a movie without going once. I’ve done this several times now. (Before I always went twice during a movie).
I made it on our 1 1/2 drive to the airport without stopping (couldn’t do that before).
I made it through a three-hour plane ride without even thinking about using the restroom. And I did drink water. Three hours! I never thought this was possible.
I no longer have the cough/sneeze leakage problem women who have given birth know about. I have no idea how a change in diet fixed that, but it did. Interestingly, I have not been doing my Kegels and the other pelvic floor exercises that I’m supposed to do. I do think those exercises are a good idea, and they did help me a little when I used to do them. But a diet change worked much better. Who knew? What if the chronic inflammation was keeping these muscles weak? It’s an interesting theory.
I continue to do little experiments here and there to see how different foods affect me. Last week we traveled to Florida and I decided to have a few locally-grown strawberries and some orange slices. The next day I woke with a pain level of 2 for a few hours but then it went away.
Last night, my daughter cooked this delicious chicken dish with sauted cherry tomatoes and spinach. I ate mostly just the chicken but I did have some of the wonderful tomato sauce with it. This morning I have pain somewhere between a 2 and a 3. I don’t like this. I’m going to quit experimenting for at least the next month and see if I can start sleeping through the night more regularly.
Objections to the Carnivore Diet
I did quite a bit of research about the health implications to carnivore before recommending it to others. I’ll address some common concerns:
How do I get the necessary vitamins and minerals if I’m not eating plants?
Copious evidence suggests that vitamin needs change in the absence of carbohydrates. This may because burning saturated fat for fuels places significantly less oxidative stress on the body than burning carbs for fuel. Fat is a cleaner burning fuel.
For example, researchers found that Inuit’s living in northern Canada did not develop scurvy despite eating only fatty caribou, salmon, and eggs. However, the Inuit’s who worked for non-native Canadians and ate their carb-heavy foods, did develop scurvy. I explain this in depth in this post as well as show the recent vitamin levels of Jordan Peterson who’s been carnivore for five years.
Doesn’t meat cause colon cancer?
Dr. Ken Berry, whom I really respect, explains the holes in the meat-causes-cancer studies in this video. Those studies were based on food frequency questionnaires. In one study, the participants were only given one questionnaire in eleven years to report on their meat consumption. Most of those studies show a correlation of 1.1 (1.0 means no correlation). To put that in perspective, studies linking smoking to lung cancer show a correlation of around 13. Now that’s something to pay attention to; 1.1 is not.
Also, you have to take into consideration confounding factors. For example, people who eat increased red meat tend to do so in the form of fast food hamburgers nearly always with French Fries cooked in industrial seed oils and washed down with a super-sized soda.
Doesn’t saturated fat cause heart disease?
That pseudo-science from the 1960s has finally been debunked such that even the American Heart Association had to finally remove the link between saturated fat and heart disease from its website. However, the lie continues to reverberate. Did you know that in 2015, internal memos were released showing that the sugar lobby paid three Harvard researchers in the 60s to create studies that blame heart disease on saturated fat instead of sugar? I explore the real cause of heart disease in this post.
What about following the government food pyramid?
Big food corporations, such as cereal companies, were allowed to edit the guidelines after the scientists made their recommendations. Need I say more?
Don’t I need fiber?
The only reason why fiber is pushed as being healthy is because if your choices are between plain white bread and a fiber-rich whole wheat bread, the high-fiber bread will be absorbed just a little bit slower than the white bread. If you’re going to consume poison (carbs), fiber acts as a bit of a poison buffer.
But no one needs fiber for proper digestion. I follow myriads of people on the carnivore diet and not one of them complains of constipation. In fact, numerous people have reported all their former problems with gas, bloating, burping, etc, have disappeared. You don’t believe me? Try it.
Also, here are two studies showing how damaging fiber can be to the gut: (here, and here.)
I have not experienced any digestive issues with carnivore. I used to have gastritis quite often (inflammation of the stomach characterized by heartburn, burping, and bloating). The fasting helped that a lot, and it’s been just as good on the carnivore diet.
I do take 4 tablets of magnesium glycinate every evening to help with sleep, muscle relaxation, keeping away migraines, etc. It is known to keep people regular, so if you’re concerned about constipation on carnivore, you could try magnesium. However, just to warn you, many people have quite the opposite of constipation on their first few weeks of carnivore as their body adjusts. One theory is that this comes from the massive die-off of sugar-loving bacteria in the gut.
On Not Feeling Sorry for Myself
When I first tell people about carnivore, they nearly always respond: how on earth could anyone ever do a diet so restrictive? And they’re not wrong. It is, from one vantage point, the most restrictive diet there is.
But it’s also delicious. Instead of focusing on all the foods I can’t eat, I am thankful for delicious meat, eggs, cheese and raw dairy. I savor every bite.
When my IC disappeared and I knew I’d be sticking to this diet long term, I made the decision right then and there that I would never feel sorry for myself on this diet.
Do I know people who can eat whatever they want and never gain weight and appear to have no health problems? Sure, I know a few such people. But I also know, just within my close circle of family and friends, people with rheumatoid arthritis, Crohn’s, MS, and diabetes. Many of us have health problems. Rather than feeling sorry for myself, I’ve decided to be thankful that I found a solution that fixed my decades of living in pain. Plus, my story gives me the opportunity to be an inspirtation to others to try cutting foods until you find your solution.
I thought about something today. If I could wave a magic wand and make it so that my IC and my chronic migraines (also gone from carnivore) had never happened, would I do it? I don’t know, because helping other people find health solutions is one of the most fulfilling things one could ever do. And if I hadn’t been through all that, how could I tell my story? Also, how could I encourage others to try something I didn’t first do myself?
So my hope is that my years of misery now have a purpose if others can read about it and find healing from their IC, autoimmune issues, Lyme’s, or depression (read here for exciting info on post on mental health). Living a full life without pain is absolutely worth a diet change. I have no reason to pout.
And if you try it and find relief, then you can also tell others too.
I’m carnivore approx 2 years. Has fixed so many problems! I recently had a flare up from either salami or some aged meat. Histamines causing a problem I think. I was also experimenting . Am so proud of you. The world is a different place on carnivore !
After 18 months of IF and EF without sustained weight loss, I'm finally giving ADF a real go. I feel great and hoping for lasting results. My joint pain is extremely reduced with ADF. I'm wondering if I need to try carnivore for a while. Since I'm losing again, I think I'll wait and see if I have a plateau. I love vegetables and I loved your podcast with Gin! Thanks for sharing your story.