Conditions, Interstitial Cystitis

Key Takeaways From My Experience With ‘Interstitial Cystitis’

After having suffered for two years of what I now understand was ‘Interstitial Cystitis’, years of researching and writing about bladder health and working with clients who suffer from chronic bladder issues I’ve gathered some key points to consider.

If you don’t want to read through all the information I have compiled on this blog, I think this could be a good starting point for anyone afflicted with these problems.

Interstitial cystitis and painful bladder syndrome – a description of symptoms

We like to put names to symptoms and this can be a great help in dealing with some conditions, but in this instance it’s not very useful in my opinion. It is merely a description of symptoms.
You have a painful bladder? Well, it’s probably painful bladder syndrome… Erm thanks, tell me something I didn’t know!
Interstitial cystitis is just a different name for the same thing but sounding somewhat worse: this horrible, chronic, incurable condition that we don’t seem to know much about!
To me, the more important question would be why the symptoms are there in the first place, rather than putting one label to them.

‘There is no cure!’ – neither true nor helpful

How often have I seen this statement make rounds on social media. And yet, I have been completely symptom free for years and have spoken to other people who have also recovered. Okay, it’s just anecdotal evidence, but I know what I know about myself. And I have worked hard to get better.

A better way of putting it could be: conventional medicine has not come up with a medication that cures this ‘condition’.

Well, how could there be a single ‘cure’ when this condition is just a collection of symptoms, often linked to other health and lifestyle issue?

Claiming there simply is no cure can only lead to hopelessness and pain.

On the other hand, claiming that ‘X’ will cure this condition is also not helpful.

What we can do, however, is look at a middle-ground:  investigate why we’ve ended up with the symptoms, address them as well as we can whilst giving our body what it needs to do its job.
After all, we should not forget that the body generally tries to be healthy and that symptoms are ‘warning signals’ or adaptations to a situation where the body struggles (don’t believe the body can heal itself? Think of wounds and fractures!).

Hidden infections

The probably biggest revelation of recent research into lower urinary tract symptoms is that:

a) gold standard urine testing misses a lot of infections
b) Bacteria can form biofilms under which they remain hidden from testing and our immune system, as well as       antibiotics
c) Bacteria can hide in cells, undiscovered by testing and our immune system and cause recurrent infections every time cells are shed. Short-term antibiotics probably fail to eradicate all of the bacteria, not getting to the hidden pathogens.

Therefore, if someone has had UTIs in the past and has then developed ‘IC’, is it more likely that a chronic mystery illness with no known cause has suddenly developed or that the infection has simply not been fully cleared?

Of course there could be other reasons, but from my experience with clients and myself everyone seems to benefit from intervention that targets microbial balance.

The bladder is not sterile

We now know that the bladder is not sterile but in fact houses its own microbial community.
This is important to know, because the balance of these microbes seems to play a big role in keeping the bladder healthy.

The gut connection

I developed ‘IC’ after several courses of antibiotics. At the same time, my gut health had really deteriorated (which tbh I didn’t even notice much at the time because the constant bladder pain was so much worse).

When I ate something that flared up my bladder, it would also give me IBS.
Only later did I learn that antibiotics can completely disrupt the microbial balance in our gut. But also our bladder microbiome. As I focused on balancing microbes, I got better.

I have also found that when I do stool testing on clients, there is usually some form of disruption in their gut microbiome. The level of disruption tends to correspond with the severity of symptoms.

The ‘IC diet’ doesn’t work for everyone

When I was ill myself, I had never heard of IC, so naturally I didn’t know about the IC diet. However, even if I had known, I’m not sure it would’ve helped me much.

Yes, some acidic foods didn’t really agree with me. But the main trigger were any form of sugar (natural or otherwise) and starchy carbohydrates like potatoes and rice.

My first improvements were noticed after ditching grains completely (although I had already ditched processed food and sugar).

So far, most clients I have worked with had been on the IC diet and didn’t notice a big difference either way. The most common trigger foods reported to me were:

  • Some type of carbohydrate
  • Gluten
  • High-histamine foods
  • Histamine liberator foods
  • High-oxalate foods
  • Some, but not all, acidic foods.

Problems with these foods can point to gut-imbalances.

In my opinion, the IC diet is potentially useful for symptom management – yes, acidic and spicy foods can burn on inflamed tissue and removing them could bring some symptom relief. But these foods probably didn’t cause the tissue to be inflamed in the first place, so is this really going to fix the problem?!

This is why I’m a big fan of customizing the diet rather than removing a big group of foods that might be harmless.

Have you considered these points before? What are your thoughts? Let me know in the comments!

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    September 23, 2018

    Great article, it’s really important for people to talk about this issue. I don’t have IC, but I have had serious bladder and urinary tract pain since my 3rd son was born – I’d had to endure a never-ending StrepB infection in my bladder and urethra, and the pain every time my son kicked me before he was born was like a knife being pulled down the lower part of my belly by my pelvic bone. Giving birth was horrible (the contractions weren’t half as bad as that ‘knife’ pain) and afterwards, I was never the same.

    • Reply


      September 24, 2018

      That sounds awful! Thanks for sharing your story and I hope you get better soon!

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    October 4, 2018

    What type of interventions target your microbial balance? I had a bought of urgency and frequency last year for around 3 weeks, and am experiencing one again now. I have no typical IC pain, but it’s extremely distressing to me to need to urinate constantly and I am battling panic and anxiety about it every day. Last year the urologist was unhelpful as my symptoms had somewhat cleared and she didn’t take me as seriously as her other patients, but said perhaps it was an embedded infection? If so, how do I target and treat this? I’m currently revamping my diet to be much healthier, taking glucosamine and magnesium supplements, and am back on antidepressants for my mental health.My gut health is poor due to inflammation in my bowel being excacerbated by the stress of these urinary symptoms, so I am also focusing on probiotic foods and taking Pentasa 1mg a day for it. I’m just at a loss.

    • Reply


      October 4, 2018

      Hi Scarlet, sorry to hear you’re suffering. Embedded infections can be addressed with antibiotics and biofilm disruptors. Natural antimicrobials could also be an option. Typical interventions for microbial balance would be pro- and prebiotics as well as removing junk foods and following a whole foods diet rich in fibre. I find gut testing useful to see what is actually going on. I’d suggest working with a practitioner on both…

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