IC Stories

How I kept Free of Chronic Cystitis for 6 Years

After recovering from chronic bladder pain and chronic UTIs around 6 years ago my bladder health has continuously improved and is now the best it has ever been.

Today I wanted to share a bit about my ongoing health journey and what I’ve been doing to keep my bladder healthy.

How it started

It basically started with recurrent UTIs that turned into chronic bladder pain (like a constant UTI) after 6 short rounds of broad-spectrum antibiotics. At the same time, I also developed pretty bad IBS symptoms.

After several fruitless visits to the doctor’s with just more rounds of antibiotics and the message that it was ‘all just in my head’, I hit rock-bottom and was completely desperate.

You can read the full story here.

How I recovered

Until then, I had never really come across chronic illness. It was not something I ever saw me having. I was not ready to accept my fate at all. So, I started searching online for a solution.

Unfortunately, my knowledge was limited and I didn’t really know what I was looking for. Some forums helped nudge me in the direction of diet.

Several juice fasts, anti-candida and raw vegan diets later I was actually worse than when I started.

Eventually I came across the GAPS diet and generally the idea that we should eat like our ancestors in order to optimize health.

I gave up vegetarianism/veganism, cut out grains and went on the GAPS diet. It was really tough!

But 6 months later, my bladder pain started easing. It became less and less severe, and I would only have flares after eating certain foods. I had recovered!

You can read all about my year on the GAPS diet here.

I should also mention here that additional hygiene measures in the form of ‘bottle washing’ have helped me stay clear of new infections.

What I’ve been doing since

I realized at some point that my bladder issues were very much connected to my gut issues. Part of the GAPS diet plan was to ‘heal the gut’. Although my bladder symptoms subsided, I still suffered a lot from bloating and other gut symptoms.

I eventually gave up the GAPS diet, as I had no energy (I was probably undereating a lot). I went on a paleo-type diet, and dabbled with a version of the low FODMAP diet (didn’t make a difference).

I even tried the elemental diet (horrible, but cleared symptoms for a while) and eventually decided to have a Fecal Microbiota Transplant (FMT – you can read about my experience here and here).

It worked to a degree, but was not the golden bullet I had hoped for.

A while later, I found out that I had Hashimoto’s thyroiditis and kind of went off the rails for a bit – I was sick of focusing on my health so much and kind of questioned the point (‘why had I developed an autoimmune condition despite looking after my health so much!?’).  I started eating more carbohydrates and generally more processed foods.

Luckily, my bladder was still okay – although it would still become a bit overactive at times, especially when I had eaten more carbohydrates.

After a while of eating whatever I wanted, I noticed that my health was declining again. I went back on a paleo-ish diet with quite a bit of white rice thrown into the mix. I also reduced oxalates in my diet, after they showed up as being high in a urine test.

I ‘ve kept doing the ‘bottle washing’, though not as meticulously as I used to and I believe this has also helped.

How I’m doing now

The paleo + white rice diet worked alright for me for a while, although I struggled a bit with blood sugar swings and satiety.

After reading a lot of very positive experiences people seemed to have with the ‘carnivore diet’ and generally ketogenic diets, I decided to give this a go for a month or so.

Now I eat mainly meat, fat and some fruit and so far, I’m finding that my gut is the best it’s been in a very long time and my bladder is also really good. I’m finding that I have a lot more mental clarity. I’m struggling a bit with eating enough though, so energy and satiety can be an issue. But I will keep working on optimizing this approach for a while longer.

It does seem that my current approach may be the best yet in terms of gut and bladder health, but only time will tell!

What is your experience with how different diets affect your bladder health? Let me know in the comments!

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7 Comments

  • Reply

    Denise

    March 19, 2021

    Hi Layla. Very interesting post, and I can really relate to your experience. I’ve also had chronic UTIs, vulvodynia, IC (interstitial cystisi, and the big Kahuna, CLL (chronic lymphocytic leukemia). I’ve gone all the way from a SAD (standard American diet), to a low oxalate diet, to Macrobiotic (beans, greens, brown rice, sea weed, and weekly white fish), to something more Paleo or Mediterranean. Today, I’m gluten free, mostly dairy free (have some butter, with Lactaid pills), low oxalate,mostly organic, minimal processed, and I manage right now to be overweight, probably from thyroid issues. (I’ve been both sub-clinical hypo and absolutely hyperthyroid.) I was ten pounds lighter when hyperthyroid post-Covid this winter, but it was not worth it. I’ve heard a lot about the carnivore diet. Can I ask why you don’t include vegetables, and eat just meat and fruit?

    • Reply

      Layla

      March 19, 2021

      Hi Denise, thanks for sharing – it’s very interesting to hear from someone with a similar journey. It sounds like you have also recovered from your bladder woes?
      So the main proponents of carnivore are saying that most plants have toxins in them as this is how they protect themselves from being eaten. Fruits are the parts that the plants want to be eaten to spread their seeds, so they’re less heavily defended. Animals defend themselves physically, so they don’t need any toxins to do this. The other argument is that people with a messed up gut do much better without fiber. Of course, as a trained Nutritional Therapist this was initially blasphemy to me! But I have to say that I do feel much better without vegetables – my gut is waaay better, my head is clear, my teeth feel really strong and are never sensitive – just to give some examples. Fruits I think can also bother many people because of sugar and acids but some of them work okay for me (apples, berries).

  • Reply

    Rob White

    May 11, 2021

    Hi Layla,

    I saw you on Karl Monaghan’s seminar on mindfulness recently, and he referenced an article of yours about the theory of hard to detect UTIs being a factor. I was surprised as Karl was never a big fan of this theory – as a patient of Prof. Malone-Lee’s for quite a while I tried to discuss these theories with him in the past and he was always dismissive. I think he felt it deterred / distracted patients from seeking physical therapy, which is his main line of work.
    Anyway, I digress. I’m really interested to hear about your carnivore diet experiences, as it’s an avenue I might explore myself for remedying my chronic prostatitis / pelvic pain. Please do an update soon!

    • Reply

      Layla

      September 9, 2021

      Hi Rob, I’m so sorry I missed this entry and never replied to it! I am IC free, so no experience on whether carnivore diet works for this. But it has helped me get rid of pretty much all other lingering health issues I still had. Saying that, I found it extremely hard! But I do think it would be worth trying. I would really do my research on this, as it’s easy to undereat or eat the wrong balance of food. If you try it, I would be very interested in your experience.

  • Reply

    Claude Armstrong

    September 4, 2021

    Being a man, my responses to lady IC are related to close symptoms, but not vagina and urethra relevant.

    Our two urine flow designs are a little similar in sphincter control during intercourse, and my calculated evidence is my IC began with a rather sudden bladder sphincter spasm that the urologists casually pronounced as prostate growth.

    I had lost my wife two years before and intercourse. The doctors all advised me to have two ejaculations each week as these clear prostate pressure and therefore bladder sphincter control.

    After I began intercourse 4 years after my wife’s death my urine flowed again.

    That planned life relation fell apart and my urine flow ended after 11 months.

    Then the detrusor muscle spasms began screaming pain attacks every hour, then half hour. My life collapsed from fatigue.

    I had severe bladder hemorrhaging early 2021 and used sodium bicarbonate instillation that attacked embedded biofilm infection, likely induced by the suprapubic catheter through my abdomen.

    Then the detrusor spasm pains worsened two fold.

    I just began a combination instillation of bicarb, 10cc, Hyaluronic Acid, 10cc, and Lidocaine 4%, 10cc, after emptying urine. The pain reduce by about half by the 3rd time. Spasms reduced to 1 hour timing.

    I am adding Sodium Chondroitin Sulfate when a powder form(BulkSupplements) arrives.

    Now the catch 22. As a male and being a unique health history, my responses to this combination will likely not be others’ response.

    But, my point is, the medical profession gropes blindly to heal this IC for patients, but patients are ultimately their best diagnosis and remedy resource. Learn everything available about the disease causes and address what you can. For me intercourse may never return, but I can address other issues.

    Hoping this encourages sufferers to persist in reducing IC symptoms.

  • Reply

    Claude Armstrong

    September 4, 2021

    To finish my IC journey…

    A vibrating heat pad up against my perineum sooths the prostate and bladder a little.

    Lying with the vibrator and heat under my pelvis helps. But both of these can go too long. Discomfort lets me know when to stop.

    For the bladder and likely related gut infections, high doses of Icelandic kelp, several mgs, kills infections like nothing else. Both men and women’s reproductive organs require iodine at levels equal, and at crisis times, higher that the thyroid.

    In fact, ladies who massage 1 drop of 5% lugols into their breasts on alternating days never have breast cancer… Yeah, go figure…

    Being 76 and zero ejaculation, my prostate definitely is swollen along the urethra. This causes intense pain with bowel movement pressing into the prostate. Ladies, take good care of your guys.

  • Reply

    Claude Armstrong

    September 4, 2021

    I’m highly focused on beneficial diet. But I also see people applying strict diet plans that work for others, not for them.

    Dr. Berg has numerous diabetic patients he finds respond well to a modified keto and long fasting period plan. Each tailors the plan to their metabolism for best healing.

    The body creates carbs from fats. These require little insulin to keep free glucose down. Cells burn off glucose and begin running on converted fats. The body metabolism reverts to minimal stored fat, and organs run free of carb wastes and toxins.

    Parasites don’t survive. Gut biotics balance out.

    However…

    Our biosphere provides wonderful carbs in many forms, mostly fruits. Creator proscribes seed plants as our health diet. Fruit is included, yet the fruit in natural life occurs during a small time window for each variety ripening, so fruit is naturally a limited part of the daily diet.

    That’s where modern food preservation interferes with natural food cycles. We have fruit year round, every vegetable preserved year round.

    From natural Winter time meat as staple to Summer fruit and vegetable staples, I wonder if a natural, varied cycle diet is more healthy?

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