INTERSTITIAL CYSTITIS, CHRONIC UTI AND BLADDER PAIN: WHAT THESE TERMS ALL MEAN FOR YOU
And what you really need to know.
Been slapped with the oh-so-helpful label of interstitial cystitis and told to carry on your merry way? You’ve probably plumbed the depths of Dr Google on your way here, trying to gain a bit more clarity around what’s going on for you. And on that journey you’ve found the term chronic UTI, which makes a lot of sense to you. But does that mean your bladder pain is actually the result of an embedded UTI that’s been overlooked?
If you’ve been told you have interstitial cystitis (which by the way, is also known as bladder pain syndrome) and you think you could actually have a chronic UTI, and you’re now wondering what the difference is and what it all means for you, this blog post is exactly what you’ve been looking for.
Firstly please know, help is available to you no matter what you've been labelled with, and later in this post you’re going to find a bonus way to get more answers than even this blog post could give you. Despite what you might have experienced before getting here, your concerns are valid, your symptoms are real and you absolutely do deserve answers.
I know you probably feel unheard, fobbed off, and like peeing will never be comfortable again. And you’re probably baffled by all these different terms that are thrown around online and in forums for people with UTIs that never really went away and the bladder pain they’re now plagued with. It’s time to change that. I’m here to help real people with real symptoms, get real answers. I’m here to help you finally get relief and make up with your bladder.
SO, CHRONIC UTI VS. INTERSTITIAL CYSTITIS WHAT'S THE REAL DIFFERENCE?
The difficulty with an IC diagnosis is that this is the conclusion that’s usually drawn when all the standard GP and urology urine tests keep coming back negative, making painful bladder syndrome the seemingly obvious medical answer.
The real difference between chronic UTI and IC is that interstitial cystitis typically doesn't involve a urinary infection. However, those standard urine tests have limitations; they don’t take into account the pathogenic bacteria which don’t grow in the lab culturing environment. And the risk is that there could be an infection driving your symptoms. It's just not been picked up because of the type of testing that has been used.
With a chronic UTI, you're dealing with a urinary infection that has become chronic, it's resistant to antibiotics, it might have burrowed into the lining of the bladder and created a protective umbrella called a biofilm. So it's hiding under there, dodging the antibiotics, and that’s why it's become chronic. And if you're still relying on the standard culture based test methods, chances are it won't be picked up there, because it doesn’t culture easily.
Functional testing has a lot more to offer; PCR urinary testing, for example, uses the genetic material of bacteria and will be more likely to be identified through testing. If you’re unsure whether you have IC or a chronic UTI, functional testing will give you much more information to work with as it shows what’s going on in the bladder at a microbial level. This additional testing might come back completely clear, in which case you may conclude that you are actually dealing with chronic inflammation, (possibly from a historic UTI that has scarred the bladder lining and created lots of inflammation) and interstitial cystitis.
“The test I use also looks at the friendly protective species that reside in the bladder, that's really important to look at as well. Because sometimes, if we've wiped out all the protective species, we're more at risk of infection, irritation and symptom flares that mimic cystitis, because those protective species produce lactic acid and that ensures that the bladder is kept in a nice acidic environment so that pathogens can’t grow.”
There's lots of other factors that play into IC such as: pelvic floor dysfunction, nervous system stress, vaginal imbalances and digestive issues. And sometimes it's even difficult to know where your pain is coming from; is it coming from your bladder or actually your vagina? Everything is so wrapped up together, it can be difficult to differentiate. That’s where a specialist nutritional therapist can help you further.
WHY THE TERMINOLOGY AROUND BLADDER PAIN MATTERS
Chronic bladder pain is a very real and debilitating thing, despite what your experience with conventional medical professionals might have suggested to you.
The terms interstitial cystitis (IC) and chronic UTI are sometimes used to medically label that pain, but whether you have one or the other, it’s incredibly painful and miserable. The terminology is really much more important to me as a practitioner as it helps me identify the right pathway and protocol you need. I won’t just hear your symptoms and tell you it’s one or the other; through an in-depth consultation and exploration process, we’ll put together all the different pieces of your health journey and uncover all the interconnected bits. With this in hand, we’ll explore advanced testing options and identify the best course of action.
In terms of directions, the approach is different depending on whether testing suggests you have an embedded UTI or not. Depending on results, we could go down multiple different routes to get you relief:
We might start with antimicrobial support
We might start with anti-inflammatory foods
We might focus more on nourishing all the good bacteria and crowding out all the bad bacteria
CAN I DETERMINE IF I HAVE INTERSTITIAL CYSTITIS OR A CHRONIC UTI BY MYSELF?
It'll be difficult to recognise the distinction between chronic UTI and IC by yourself, because the symptoms are going to be very similar. We’re talking about increased frequency, urgency, lower abdominal heaviness, aches, a stinging or burning sensation when peeing.
And the chances are your tests will keep coming back negative for both (this will depend on what consultant you've seen, which term they've decided to use and how much reading up they've done).
The problem with believing in the IC label is that you could be walking around with an infection that has been completely missed. And that is definitely going to have a massive impact on your life. There’s also a likelihood that you end up feeling that you're not being taken seriously; perhaps you “just have a sensitive bladder” or maybe it’s, “psychological, you need to worry less, and retrain your brain”. And that's not hugely helpful.
People tend to see the IC label then immediately head for Google, which tends to lead to the IC diet. And that really upsets me, because that approach is completely based on the assumption that acidic foods are acidic to the bladder. That's simply not how the body works, it's just nonsensical. Vegetables and fruits are really rich in minerals which add bicarbonate (alkaline), so it’s total BS to say that they cause your bladder to be acidic. So people end up on this nonsense diet for years, they lose weight, they feel depressed, and they end up further away from actually healing - that’s exactly what happened to me, too.
It's a really fearful place to be and I had a real lightbulb moment, on my own healing journey, when my nutritionist explained to me that actually that's not what happens to food when you ingest it. I suddenly felt like I was given my life back and was actually finally able to breathe and eat again. It’s all about seeing food as medicine, rather than the enemy and the reason your bladder hurts.
“Googling cures for IC suggests that there is one thing, or one supplement, that is the cause of all your symptoms. And trust me, there are multiple issues at play, and just popping some aloe vera supplement is not going to take away all your pain overnight. There is no quick fix or magic pill. And that's difficult to accept because, naturally, you want a quick fix and you want your life back.”
On the supplement side of things, people will try a supplement, give it a few days, or a week and be like, “Oh, that's not really doing anything. I'll go back to that Google page. Oh, someone else is suggesting Marshmallow, actually, I'll swap to that. See if that works.”
But actually, what you're missing is a tailored plan, that will give you the right dose, in the right form, at the right time, to create that shift, and bring about symptom changes and relief. Jumping from one thing to another doesn't work. Working with a nutritional therapist who is trained in the use of supplements will save you an awful lot of time, guesswork, pain and money. How much money do you feel like you’ve already wasted on random supplements, when you don't really know what you're doing with them?
Sometimes you'll think you'll have a UTI, when actually it's an imbalance in the vagina, because that can act as a reservoir of bacteria that are actually associated with UTI. So often if your symptoms flare and subside, repeatedly, there’s a possibility that the UTI symptoms are coming from a bacteria that's lurking in the vagina. And at the first sign of stress, or you're rundown, or you've got a new partner, you're wondering why the hell your symptoms flare up, but it's because there's been a shift in the balance in the vagina whether it's bacterial or pH and you end up in this cycle of flare and settled.
“At the end of the day, the term IC is almost meaningless, it just means you really have chronic inflammation of unconfirmed cause. My mission is to help you work out what's causing that chronic inflammation. Is it an infection? Is it scarring from a historic infection? Is it a pelvic floor issue? Is it stress? Is it something else? IC alone is not really a helpful label, and I would take it with a pinch of salt and not accept it as a life-sentence; it's an umbrella term.”
So why does it matter what we call this bladder pain? If we called it by any other name, it would still sting as bad, right?
It matters whether we call it IC or chronic UTI, because we want to ensure you get the best treatment and the best possible results. And if you keep being told you have IC, then you could be walking around with an infection that's been completely ignored. And it's going to be incredibly uncomfortable for you, and interfere with lots of different elements of your life - from sex and housework, to your ability to go out and socialise. But if we're accessing better quality testing, determining if it could be a pathogen or simply an imbalance in the bladder microbiome, then at least then we know which direction to go in and whether to focus our time on changing that microbial imbalance, or if we need to replenish the good bacteria.
The aim of all this is to help you to see the light at the end of the tunnel, get things moving in the right direction, bring those pain scores down, and liberate you from constant worries around your bladder pain. Ready to stop fannying about and really tackle your bladder pain? Visit the Heal Your Bladder programme and discover how this approach could work for you. Be part of the movement and help change the way we talk about and treat bladder health.
