The complete what and why guide to Interstitial Cystitis / Bladder Pain Syndrome

What is Bladder Pain Syndrome?

The first thing to say about Bladder Pain Syndrome is what it’s Not….

Initially people went to their doctors with the symptoms of a chronic infection – a urinary tract infection or cystitis. They had an urgent need to pass urine, felt like they needed to go often and it would be accompanied by pain in the bladder region, perineum (between the legs) or in the urethra (tube from the bladder). However this went on much longer than an infection should, and often after taking antibiotics. The lining of the bladder is called the interstitium and so it was thought that when people presented with this group of symptoms they had a chronic infection of the bladder lining. This is how the name Interstitial Cystitis came around.

It’s now understood that Interstitial Cystitis/Bladder Pain Syndrome is much more complex, and many people do not have a chronic infection of the bladder or urethral lining. Even If they do have a chronic infection it may not be causing all the symptoms of BPS. In fact a great proportion of us carry MRSA (that killer antibiotic resistant bug you hear about) in our noses – but we don’t have an epidemic of chronic nose pain… The fact is that many areas of the body can have a chronic infection and cope well. It’s all about how under threat the brain perceives a certain area to be, and how it mounts a response to the perceived threat.

That’s what makes BPS so beautifully complex, and where it gets its name from. Everything I’m going to tell you now is based in strong evidence. There has been a wealth of research into this condition in men and women in the last few years, and we now understand that there are a number of contributing factors, each as important as the other:

– Changes to the “motor” (movement) and “sensory” (feeling) areas of the brain that relate to the pelvic organs, especially the bladder
– Changes in how on edge the nerves are in the bladder and surrounding areas
– Changes in how much attention the brain pays to the bladder
– Changes in how the brain perceives the bladder and urethra to be under threat
– Tension in the pelvic floor region
– Tension in muscles and fascia (connective tissue around and between muscles) in the area

We also know that nobody experiences exactly the same symptoms in the same way, it’s a spectrum of disorder with some commonalities – chronic pelvic pain, urinary urgency and frequency. In 2008 the international community renamed the condition Bladder Pain Syndrome to better reflect what we now understand is happening.

So lets talk about those changes a bit more specifically:

Bladder Bears

For a reason we don’t quite understand yet, your brain thinks your bladder is still under threat. For want of a better term, it thinks that there are bears attacking your bladder. If you haven’t read the blog or watched the Understanding Pain and Threat video, now would be a good time to go back and have a look.

The bladder was attacked at some point – there was an infection or a trauma to the region, or historically you may have had an attack in that area. For example, I had one patient who had repeat urine infections as a child due to skin allergies. These cleared up but then when she became sexually active her brain “knew” that the bladder region was under attack again – as historically it had been. This “attack” wasn’t new to her. Her library-of-all-the-events-ever-to-happen-to-her-body (basal ganglia area of the brain) had a Really Big book called “Bladder Bears” noting every time a UTI had happened and how debilitating it’d been. So now when that region went through a new experience, even one that she felt was pleasant at the time, or it had to work with a slight alteration in pH and potentially new chemicals to deal with (sweat, lubricant etc) her brain decided it needed to protect her by flying into a default position of attacking the perceived threat in her bladder and urethra. Even though it was a region nearby by that had actually been involved. Her brain was doing its best.

So the first thing we’re dealing with is a Chronic Threat State.

When you’re under threat your body will do a few things at once to help fight or reduce the threat:

 1) It’ll call up your immune system and station your immune soldiers in the area that’s being threatened, triggering an immune reaction. So that area will become inflamed.

2) It’ll turn up your nerve endings so they’re super-sensitive so that it can find out about Everything that happens in the area, in case it’s more threatening.

3) It’ll potentially tighten muscles and fascia, or stop them from working because you’re sore, to protect the area and prevent further damage.

So you can see how quickly you can become sore, hypersensitive and inflamed in the bladder and urethral area. This super-sensitivity means your brain will get even More information than it would normally when your bladder begins to stretch as it fills, which means you might feel like you’re more full than you really are. In fact you might feel desperate to empty your bladder when it’s only got a 100-200mls in it, when it should happily store up to 600mls. The urine inside the bladder may also make the sore, inflamed lining unhappy and make it want to eject the fluid, causing you to feel an urgent need to quickly empty your bladder.
All in all a great reaction if you have actual bears in your bladder, but an overreaction to the perception of threat, which doesn’t necessarily exist. And this is normal. It’s how ALL of our bodies work. It’s why some people don’t feel anything when they break a bone or have a leg blown off on the battle field (no threat perceived or greater threats perceived so the brain decides not to tell you about this one) or indeed why people sometimes feel pain when there’s no reason to (phantom limb pain for example).

Brainy Changes

If the perceived threat stays put for longer than 6 months you start to see changes in the brain.

1) The area that decides how much attention to pay to different areas decides your bladder is where it’s at, full beam trained on that bladder. All. Day. Long. So you become more consciously aware of how it’s feeling – full, more full, urgently full or painful.

2) The area of the brain that decides how full your bladder is, and when it needs to empty, gets a bit skewed. So it interprets signals from your bladder as BIG SHOUTY CAPITALS that your bladder DEFINITELY NEEDS TO EMPTY RIGHT NOW. You feel more full and more urgent. Even if a year ago you were this full and at the cinema it wouldn’t even cross your mind you needed a wee.

3) The area that decides how tense your pelvic floor muscles are tightens them up. Your resting muscle tension increases – a bit like when you’re working hard at the computer and your shoulders are a bit sore. Now we all know that sore, tight shoulder muscles can give us a headache. Well, sore, tight, overworked (without a relax now and then) pelvic floor muscles can create feelings of pressure in the pelvis, pain, pain with intercourse, make you more aware of the weight of the bladder filling and…and… drive the feeling of urgency. You need to go more because your muscles are tight.
This is all because the three areas of the brain are really closely linked and act together. Changes in one can lead to changes in the other.

4) The brain can’t cope with having to manage this time-consuming and complex threat response all day long for a prolonged period, it needs brain activity available to keep everything else working and to check that there aren’t other bears sneaking in when it’s not looking.. So after a period of time it hands the job of project managing your threat state over to your Limbic system. This is the bit of the brain where you produce and process emotions. So now your emotional centre is also managing your pain. Your pain and emotions become intrinsically interlinked. If you’re having a bad day and feeling sad, your pain gets worse. If your pain gets worse you get depressed or anxious. It’s a loose-loose situation. We know that if you have anxious or unhappy thoughts that the inflammation at the level of the bladder lining can increase – emotions are chemicals and they intrinsically interact with the chronic threat state you’re in.

So in summary…

The nerves in the bladder lining and around the pelvic region change their behaviour to be a bit on edge and sensitive at all times. Your immune system becomes much more involved in trying to police the region, so you have swelling, inflammation and more soreness in the area. Any and all signals from the bladder region can be interpreted as threats at any time and pain experienced as a result.
Then your brain turns up the areas governing how full your bladder feels, how much attention you pay to your bladder, and how tight your pelvic floor muscles are – making all your bladder symptoms worse.

Plus then your Limbic system gets in charge and suddenly all your symptoms make you miserable as well as in pain, which in turn increases the pain.
All of this happens without your consent, as an automatic process designed to protect you from a perceived threat. There doesn’t have to be a real threat. The experience however is all real – real inflammation, real sensitivity, real pain.

The good news is that this is reversible 😊 I’ll cover that in upcoming blog posts. Stay tuned!

 

If you’re interested in talking to me I have a clinic in Cardiff and also see people via Skype sessions. Click here to book yourself some time with me.

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