YOUR LIFE ISN’T OVER WITH INTERSTITIAL CYSTITIS (IC)!
If you’re googling “is my life over now I have IC?” you’re clearly at the end of your tether, right? You want to know if you’ll ever feel better again. Because it feels pretty hopeless doesn’t it?
It’s 3am, you’ve been up to the loo at least hourly with a desperate and painful urge to pee, yet nothing. For the umpteenth night in a row. Your pelvis aches constantly and even walking back from the shops is becoming an impossible task. God forbid you try to head to the pub and socialise. In short, Interstitial Cystitis is ruining your life.
On top of the agony, it feels like no one is taking you seriously. You’ve been given antibiotics (more on that later!) and told to drink more water. They may have referred you to a specialist for a cystoscopy... or they might not.
What I’m trying to say is that I get it. I have been where you are. My whole life was on hold because of the sodding IC that wouldn’t go away. I was told I’d just have to learn to “live with it”.
BUT things CAN be better. I am testament to it!
Let me explain how you can finally take back control of your life from IC and why your life isn’t over!
WHAT IS INTERSTITIAL CYSTITIS (IC)?
Interstitial cystitis is a poorly understood bladder condition that causes long-term pelvic pain and painful peeing. It's also known as painful bladder syndrome or bladder pain syndrome.
IC (and painful bladder syndrome) are umbrella terms used to describe a painful bladder with no obvious cause. It's a label that's used when all other obvious medical conditions (e.g. active infection, or cancer - thankfully!) are ruled out.
Interstitial cystitis literally describes an inflammation of the area between the bladder lining and bladder muscles (the interstitium), and you will experience an increased need to urinate. Symptoms of IC are not thought to be driven by an active infection. However, due to limitations in testing methodology, this theory is being challenged.
Symptoms of interstitial cystitis include: dull aches in the pelvic area, bladder spasms and constant sensation to pee, waking up several times during the night to go to the loo, burning sensations in the urethra... It's like a UTI that has become chronic but there is no obvious infection. Everything feels inflamed and swollen. It can be accompanied by a heaviness in the lower abdomen.
Treatment is typically with antibiotic therapy, followed by bladder instillations (using antibiotics or Hyacyst), anti-depressants, or Hiprex, a medication that acidifies your urine to keep bacteria at bay. Botox is sometimes offered as a last resort in an attempt to manage symptoms. Female health physiotherapy with a practitioner experienced in painful bladder syndrome is highly advisable.
It's common to be fobbed off with, "oh it's just IC" once all obvious medical causes are ruled out but if you dig deeper there's often other stuff going on.
WHAT CAUSES INTERSTITIAL CYSTITIS?
No one knows for definite what causes interstitial cystitis but there are many theories and contributing factors. Let's explore them.
Potential causes of IC may include:
Damage to the bladder lining (from a UTI or other trauma), which may mean even small amounts of pee can irritate the bladder and surrounding muscles and nerves.
A problem with the pelvic floor muscles and nerves surrounding the bladder. Sometimes due to the inflammation in the bladder, the surrounding muscles of the pelvic floor tighten and spasm and nerves become irritated. You're left with an overactive pelvic floor which makes bladder pain even worse and contributes to painful sex.
The pudendal nerve can become inflamed and irritated contributing to sharp "nerve-like" pain from the clitoris, urethra, vulva and pubic bone. The kind of stuff your doctor will have missed but a female health physio can help diagnose (more on them later!).
Chronic or embedded UTI is a potential cause of IC. Treatment is typically longterm antibiotic therapy in an overall attempt to achieve sterility of the bladder. But... this ignores the overall environment that maintains a healthy bladder microbiome... We’re going to need more than antibiotics to mop up all the damage caused by an embedded UTI. Read on to find out why.
WHAT CAN WE DO TO IMPROVE LIFE WITH IC?
As you’ve probably discovered after being given numerous antibiotics, “killing” the pathogen with antimicrobials over and over doesn’t repair the damage it has caused and doesn't strengthen our immune system to prevent recurring UTIs or heal the bladder lining. Antibiotics (although life-saving), leave behind a trail of destruction in terms of gut microbial health, and vaginal and bladder health so that’s still going to require attention if we want to heal our bladder. And this is where tailored nutrition really comes into play!
So what next?
We'd explore the four pillars I cover with all my clients as part of my Heal your Bladder programme. These include:
Restore immune resilience to prevent recurring UTIs
Repair your bladder lining to reduce inflammation and soothe bladder irritation
Replenish your friendly microbes because they are needed to maintain a happy and healthy bladder
Rebalance your nervous system to prevent overactive pelvic floor muscles and irritated bladder nerves.
First we’d need to look at your bladder health. Clearly something is off-kilter. Removing common dietary bladder irritants, while strengthening your natural defences, taking an anti-inflammatory and healing approach to the bladder lining.
We’d also consider if your secretory IgA is low (a marker of gut-immune function) and investigate your vitamin D status (involved in immune function and UTI risk). (Gombart, A.F., 2009).
Then we’d take a closer look at your gut and intimate female health too, because sometimes those are what’s driving the actual problem.
We'd balance your stress response to help calm your nervous system and ease muscular tension. Even if you don't *feel* stressed... being in chronic pain is stressful for the body. When pain becomes chronic our fight or flight mode becomes activated more quickly.
LET’S PLAY IC DETECTIVE
As a nutritional therapist who specialises in gut and female urinary health, and as someone who has experienced the trauma of Interstitial Cystitis (and that is not an exaggeration!) I know how important it is to get to the root of the issue.
Telling someone they’ll have to learn to live with chronic pain is cruel and unnecessary. Frankly, it’s kinda lazy. Because there’s plenty of further detective work to do.
WE RUN A SERIES OF TESTS
For instance:
We'd run a Urinary Ecologix test to explore your urinary microbiome.
This test looks at the urinary bacteria, both key commensals (friendly bacteria) and pathogens associated with urinary conditions. Using the microbial DNA we are able to get a read on the friendly bacteria in the urinary bladder, as well as potential pathogens.
Are you noticing changes in vaginal health post antibiotics?
Perhaps you’re unsure if you’re living with thrush, or bacterial vaginosis, and no amount of Canesten is helping? Maybe you’re nearing menopause or you're post menopause, and never considered the role of declining oestrogen or vaginal health in your painful bladder symptoms before?
If you answered YES to any of these questions we'd run a Vaginal Ecologix.
A simple but comprehensive at-home vaginal swab that analyses the vaginal microbiome (bacteria and yeast) – a key ecosystem for female health as well as pH levels and inflammatory markers giving us clues as to what’s really going on down there.
Assessing vaginal health is also incredibly helpful for those struggling with recurrent or chronic UTIs. Research suggests vaginal bacteria may be exposed to the urinary bladder, causing exfoliation of the bladder cells, allowing Ecoli to proliferate (Gilbert & Lewis, 2019).
And don't forget your gut health!
So many of my clients struggle with gut issues including small intestinal bacterial overgrowth (SIBO), excessive bloating, constipation or diarrhoea. If your gut is out of balance this will have a negative effect on your bladder symptoms. Working with me 1-1 you’d have access to a comprehensive stool test, to take a closer look at what is going on in the gut.
HOPEFULLY AFTER READING THIS YOU’RE FEELING A BIT MORE HOPEFUL THAT LIFE CAN GET BETTER!
Having interstitial cystitis doesn’t mean your life is over and there is definitely light at the end of the tunnel, you just need the right support to get there.
Book a call now to discover more about how I can help you with finally waving goodbye to chronic bladder pain, UTIs and IC. I offer tailored 1:1 support through my Heal your Bladder programme so that you can start living and loving life again!
References:
Gilbert, N.M. and Lewis, A.L. (2019) “Covert pathogenesis: Transient exposures to microbes as triggers of disease,” PLOS Pathogens, 15(3). Available at: https://doi.org/10.1371/journal.ppat.1007586.
Yoo, J. J. et al. (2022) ‘Gardnerella vaginalis in Recurrent Urinary Tract Infection Is Associated with Dysbiosis of the Bladder Microbiome’, Journal of Clinical Medicine, 11(9). doi: 10.3390/jcm11092295
Gombart, A.F. (2009) “The vitamin D–antimicrobial peptide pathway and its role in protection against infection,” Future Microbiology, 4(9), pp. 1151–1165. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821804/
