IC Success Story: Michelle Brûle
Today's interstitial cystitis success story will be a feature on Michelle Brûle in the United Kingdom. Read her triumphant story below.
I did tons of research in the UK and found a guy in London who specialises in this type of problem. I had over 20 negative urine tests despite having blood in my urine. I was categorically told I did not have an infection and it was normal for IC to have blood! I saw so many urologists and they all said the same thing! I didn't believe them as I know my own body better than they do. They recommended instills, invasive treatments, botox and all sorts of shit, none of which they would guarantee could help me at all. I did tons of research in the UK and found a guy in London who specialises in this type of problem. It took months to get to see him but at my first consult he took a urine sample, looked at it under a microscope and diagnosed me in minutes with a chronic and severe infection. My urine was full of pus. It turns out that global urine testing is a very hit and miss affair with 50% of infections going undetected because the test is too broad spectrum.
I am going to attempt to explain what I have learnt from the amazing Professor Malone-Lee. This is my interpretation of it with quotes from his work. This is not a diagnosis and I will not responsible for anything you choose to do after reading this! There, that should cover the legal crap!
The urothelium (the tissue lining the bladder) is usually about five cells deep, so imagine the bladder wall is ai brick wall five bricks high with urine flowing horizontally along the top. It is believed to take about 100 days for a cell (brick) at the bottom to transit to the top and then die and be flushed away by urine. A normal bladder is not sterile and contains at least 550 different species of bacteria swimming in the urine. It is probable that the normal bladder has plenty of microbes swimming around in the urine but they are in comfortable balance with the body and not causing symptoms. When an infection strikes for whatever reason, microbes can get into the base of the urothelium and in some cases enters the cells themselves. This is called intracellular colonisation. When the infection is treated aggressively in the first 14 days in mice experiments then the colonisation does NOT occur. The same is assumed in humans. If it isn’t treated aggressively, the microbes that have entered the cells go into a dormant state and hibernate, therefore they do not divide. Antibiotics can only kill cells which are actively dividing and NOT dormant. This is how the infection takes hold. By remaining dormant, they survive short antibiotics attacks (which is one of the many ways the doctors fail us!)
This is why assaults with powerful broad-spectrum agents or intravenous treatments are so disappointing. These methods produce early gratifying results by killing off large numbers of dividing microbes but once they are stopped the dormant microbes wake up and invade the spaces in the cells cleared by the antibiotics. A single dormant microbe, woken from slumber, can become 1 million microbes before the sun sets apparently!
As the microbes continue their assault, the cells start transmitting distress signals to the immune system. This results in an inflammatory response which would show as an inflamed bladder wall or blood from burst vessels leaking into the urine and showing on the dipstick. Just because the bladder looks red it does not imply a diagnosis of interstitial cystitis. If the inflamed bladder has a tendency to bleed spontaneously then it should be no surprise to see bleeding patches appear when the bladder is distended. It is claimed that this implies a diagnosis of interstitial cystitis – but it DOES NOT, it just illustrates the presence of inflammation. The inflammatory response will involve producing cytokines which are released by the infected cells as a warning. Then white blood cells (pus cells and a whole other load which I can’t pronounce) infiltrate the urothelium to fight off the microbes assaulting the cells. Unfortunately because the microbes are cunning little buggers, they hide in a dormant state in the cells, so when the cavalry (white cells) arrive to see them off, they can’t find anything! The cavalry and the bladder wall have a Mexican stand-off and the result for us is chronic inflammatory response (flare) that does not achieve very much other than cause pain and white blood cells in the urine. A culture is highly unlikely to find a problem at this stage because the baddies are still hiding in the cells and not the urine which is what is collected for testing!
To deal with the stand-off the urothelium thickens to form a protective layer which is completely useless as the microbes are already hiding in the cells so this just gives them more places to hide! Because of this it then takes longer than 100 days for the cells to move upwards with normal shedding.
There is a tiny thin layer on the top wall of the urothelium called the GAG layer. When the urothelium thickens it doesn’t affect the GAG layer in any way so drugs or bladder instillations which are designed to replace the GAG layer don’t work because the GAG layer is still there. (A 2016 analysis of 36 randomised controlled trials, evaluating 1,822 participants conducted on the use of bladder instillations showed that they are no better than placebo. There is no coherent pathophysiological reason why they should work.)
The inflammation and the increased number of urothelial cells will also thicken the wall of the urethra. This causes a degree of obstruction and causes a reduced urine stream, hesitancy, intermittency, terminal dribbling and double voiding. Some surgeons recommend urethral dilation as a treatment but the voiding problem is not causing the infection. Urethral dilation will NOT help you in the long term, and often makes things worse!
A similar cock-up happens when doctors assume that incomplete bladder emptying needs catheterisation to solve it when actually the infection is still there. There is NO scientific evidence ANYWHERE that says any urine left in the bladder after a wee will cause an infection. None! Your bladder isn't sterile anyway. The thickened, inflamed and frankly pissed off bladder may now contract and spasm inappropriately causing more frequency, urgency and urge incontinence, and pain. By this point an ill-informed consultant may suggest, or shock horror even actually try to distend the bladder to open it up. This pisses off the bladder even more and it shows it’s disgust by bleeding which the consultants feel proves their point!! The infection however, remains.
Current published literature shows NO evidence of benefit from cystodistension or urethral dilation. Absolutely none! Some surgeons cauterise these lesions which is crazy because to rid the infection by this stage you would have to burn the whole bladder!. How can cauterising bladder urothelium cells repair tissue that is harbouring a chronic infection; it can’t!
Now we get onto biofilms which are present on every surface of our body, eyes, intestines, bladder, everywhere. Biofilms are normal, they are not a problem UNTIL a naughty mean microbe gets into one of them. When this happens, the microbes go straight into hiding again (becoming resistant to antibiotics) and they can attach themselves to the biofilm. Disaster, because then the biofilm can harbour dormant microbes with the ability to break out, divide and start a little infection all of its own. :-(
So it is with great regret that I inform you that drinking shitloads of water will likely not help, in any way. At all. The microbes are firmly glued to the cells and cannot be washed away. Drinking lots of water will only result in diluted urine and diluted antibiotic and dilution of the natural anti-infection chemicals produced by the urinary tract. I was advised to step away from the water! If your urine test is positive and you are told to drink lots of water, then the test may show negative because of the dilution, NOT because you are cured of infection.
By now your immune system is mightily pissed off and responds to the infection by shedding cells more quickly to alleviate the problem. The clever microbes however, realise they are about to be ditched, wake up and divide so vigorously that a microbial swarm bursts out of the cells into the urine. This is known as a “planktonic flare” and will lead to a acute cystitis. Not only that, but it will also result in the colonisation of all the fresh new healthy cells which are growing at the bottom of the epithelium. These flare ups cannot be "controlled" by diet. They are completely unrelated . Obviously some spicy food may make your bladder feel worse, but you will still have flares regardless of diet.
So there you have it. The Professor believes the only way to treat this is by a long term course of a specific antibiotic (individually assessed for you) which will treat the infection layer by layer by layer until the cells coming through are completely free of microbes. That’s it. Sounds simple really when it’s explained like that! I was on treatment for 11 months and I am free of any symptoms. My very last urine sample showed zero pus cells so it's worked. The urgency has gone, no pain, and I can live a normal life.
I am in regular touch with people (men too) who finished their treatment with the Prof years ago and are cured. If they get a bout of cystitis (which is perfectly normal) they take a two week course of antibiotics which kills it dead and doesn't allow it to embed in the bladder wall. The link below has lots of science to back this up and also links to various Professors around the world who are curing embedded infections which were wrongly diagnosed as I.C. They all believe as many as 75% of I.C. patients are incorrectly diagnosed. I have never felt so well and my life is back to normal. I have moved to France and drink wine every day, eat what I want and make love to my (very patient) fiance. I have my life back. You know your own body better than they do. Just because they are doctors doesn't mean they know everything. Unbelievably, very few of them stay up to date with current research which is why they recommend instillations, urethral stretching etc. It's their 'Job" to make you feel better, so in many cases it's a "ticking off boxes" exercise! Utterly barbaric and unnecessary! Unless they can give you a % guarantee it will help you, why do it. I bet in the same situation they wouldn't!! I found my cure by a random post on FB like this. I hope this helps someone else now.
Michelle Brûle was diagnosed with interstitial cystitis and had it cured by Professor Malone-Lee in London, UK. You can find Michelle's original story posted on Facebook here in the "Embedded UTI Support/Advice Group" (it's a private group so you may not be able to see it there unless you join the group). She also has her story published on Chronic UTI Australia which is viewable to the public. She has welcomed IC and chronic UTI patients to reach out to her. You can find her on Facebook at: https://www.facebook.com/michelle.brule.75839
Here is Michelle's Story:
I was diagnosed with I.C. years ago and found the NHS here lacking in support and knowledge. I was suffering from extreme pain, frequency, urgency, urethral spasms, back ache, pins and needles in my legs and I was unable to work or even go out much. I kept being told I didn't have an infection! I am now completely cured and I want to share it with you because it may help you.
Firstly, I.C. isn't an actual diagnosis, it's a name for a group of symptoms of unknown cause. Don't stop reading - this is very important!! What causes the I.C. "is" the diagnosis. The easiest way to explain it is to compare it to dermatitis. "Itis" means " inflammation of", so dermatitis means "inflammation of the skin (derma). However, dermatitis is NOT a diagnosis either, it's what is causing the dermatitis that is the diagnosis, often an allergy to something specific. Dermatitis is just a generic name for similar symptoms.The problem is many people never find out what causes I.C, as they believe that is the actual diagnosis so they accept that and try and treat the symptoms, NOT the cause. Many things can cause IC, but one of the main and most common ones is a deeply embedded infection. Even most urologists believe IC is a diagnosis, but IT IS NOT. It's hard to get your head round because most urologists refer to it as a diagnosis all the time.
Firstly, I.C. isn't an actual diagnosis, it's a name for a group of symptoms of unknown cause. Don't stop reading - this is very important!! What causes the I.C. "is" the diagnosis. The easiest way to explain it is to compare it to dermatitis. "Itis" means " inflammation of", so dermatitis means "inflammation of the skin (derma). However, dermatitis is NOT a diagnosis either, it's what is causing the dermatitis that is the diagnosis, often an allergy to something specific. Dermatitis is just a generic name for similar symptoms.The problem is many people never find out what causes I.C, as they believe that is the actual diagnosis so they accept that and try and treat the symptoms, NOT the cause. Many things can cause IC, but one of the main and most common ones is a deeply embedded infection. Even most urologists believe IC is a diagnosis, but IT IS NOT. It's hard to get your head round because most urologists refer to it as a diagnosis all the time.
I did tons of research in the UK and found a guy in London who specialises in this type of problem. I had over 20 negative urine tests despite having blood in my urine. I was categorically told I did not have an infection and it was normal for IC to have blood! I saw so many urologists and they all said the same thing! I didn't believe them as I know my own body better than they do. They recommended instills, invasive treatments, botox and all sorts of shit, none of which they would guarantee could help me at all. I did tons of research in the UK and found a guy in London who specialises in this type of problem. It took months to get to see him but at my first consult he took a urine sample, looked at it under a microscope and diagnosed me in minutes with a chronic and severe infection. My urine was full of pus. It turns out that global urine testing is a very hit and miss affair with 50% of infections going undetected because the test is too broad spectrum.
I am going to attempt to explain what I have learnt from the amazing Professor Malone-Lee. This is my interpretation of it with quotes from his work. This is not a diagnosis and I will not responsible for anything you choose to do after reading this! There, that should cover the legal crap!
The urothelium (the tissue lining the bladder) is usually about five cells deep, so imagine the bladder wall is ai brick wall five bricks high with urine flowing horizontally along the top. It is believed to take about 100 days for a cell (brick) at the bottom to transit to the top and then die and be flushed away by urine. A normal bladder is not sterile and contains at least 550 different species of bacteria swimming in the urine. It is probable that the normal bladder has plenty of microbes swimming around in the urine but they are in comfortable balance with the body and not causing symptoms. When an infection strikes for whatever reason, microbes can get into the base of the urothelium and in some cases enters the cells themselves. This is called intracellular colonisation. When the infection is treated aggressively in the first 14 days in mice experiments then the colonisation does NOT occur. The same is assumed in humans. If it isn’t treated aggressively, the microbes that have entered the cells go into a dormant state and hibernate, therefore they do not divide. Antibiotics can only kill cells which are actively dividing and NOT dormant. This is how the infection takes hold. By remaining dormant, they survive short antibiotics attacks (which is one of the many ways the doctors fail us!)
This is why assaults with powerful broad-spectrum agents or intravenous treatments are so disappointing. These methods produce early gratifying results by killing off large numbers of dividing microbes but once they are stopped the dormant microbes wake up and invade the spaces in the cells cleared by the antibiotics. A single dormant microbe, woken from slumber, can become 1 million microbes before the sun sets apparently!
As the microbes continue their assault, the cells start transmitting distress signals to the immune system. This results in an inflammatory response which would show as an inflamed bladder wall or blood from burst vessels leaking into the urine and showing on the dipstick. Just because the bladder looks red it does not imply a diagnosis of interstitial cystitis. If the inflamed bladder has a tendency to bleed spontaneously then it should be no surprise to see bleeding patches appear when the bladder is distended. It is claimed that this implies a diagnosis of interstitial cystitis – but it DOES NOT, it just illustrates the presence of inflammation. The inflammatory response will involve producing cytokines which are released by the infected cells as a warning. Then white blood cells (pus cells and a whole other load which I can’t pronounce) infiltrate the urothelium to fight off the microbes assaulting the cells. Unfortunately because the microbes are cunning little buggers, they hide in a dormant state in the cells, so when the cavalry (white cells) arrive to see them off, they can’t find anything! The cavalry and the bladder wall have a Mexican stand-off and the result for us is chronic inflammatory response (flare) that does not achieve very much other than cause pain and white blood cells in the urine. A culture is highly unlikely to find a problem at this stage because the baddies are still hiding in the cells and not the urine which is what is collected for testing!
To deal with the stand-off the urothelium thickens to form a protective layer which is completely useless as the microbes are already hiding in the cells so this just gives them more places to hide! Because of this it then takes longer than 100 days for the cells to move upwards with normal shedding.
There is a tiny thin layer on the top wall of the urothelium called the GAG layer. When the urothelium thickens it doesn’t affect the GAG layer in any way so drugs or bladder instillations which are designed to replace the GAG layer don’t work because the GAG layer is still there. (A 2016 analysis of 36 randomised controlled trials, evaluating 1,822 participants conducted on the use of bladder instillations showed that they are no better than placebo. There is no coherent pathophysiological reason why they should work.)
The inflammation and the increased number of urothelial cells will also thicken the wall of the urethra. This causes a degree of obstruction and causes a reduced urine stream, hesitancy, intermittency, terminal dribbling and double voiding. Some surgeons recommend urethral dilation as a treatment but the voiding problem is not causing the infection. Urethral dilation will NOT help you in the long term, and often makes things worse!
A similar cock-up happens when doctors assume that incomplete bladder emptying needs catheterisation to solve it when actually the infection is still there. There is NO scientific evidence ANYWHERE that says any urine left in the bladder after a wee will cause an infection. None! Your bladder isn't sterile anyway. The thickened, inflamed and frankly pissed off bladder may now contract and spasm inappropriately causing more frequency, urgency and urge incontinence, and pain. By this point an ill-informed consultant may suggest, or shock horror even actually try to distend the bladder to open it up. This pisses off the bladder even more and it shows it’s disgust by bleeding which the consultants feel proves their point!! The infection however, remains.
Current published literature shows NO evidence of benefit from cystodistension or urethral dilation. Absolutely none! Some surgeons cauterise these lesions which is crazy because to rid the infection by this stage you would have to burn the whole bladder!. How can cauterising bladder urothelium cells repair tissue that is harbouring a chronic infection; it can’t!
Now we get onto biofilms which are present on every surface of our body, eyes, intestines, bladder, everywhere. Biofilms are normal, they are not a problem UNTIL a naughty mean microbe gets into one of them. When this happens, the microbes go straight into hiding again (becoming resistant to antibiotics) and they can attach themselves to the biofilm. Disaster, because then the biofilm can harbour dormant microbes with the ability to break out, divide and start a little infection all of its own. :-(
So it is with great regret that I inform you that drinking shitloads of water will likely not help, in any way. At all. The microbes are firmly glued to the cells and cannot be washed away. Drinking lots of water will only result in diluted urine and diluted antibiotic and dilution of the natural anti-infection chemicals produced by the urinary tract. I was advised to step away from the water! If your urine test is positive and you are told to drink lots of water, then the test may show negative because of the dilution, NOT because you are cured of infection.
By now your immune system is mightily pissed off and responds to the infection by shedding cells more quickly to alleviate the problem. The clever microbes however, realise they are about to be ditched, wake up and divide so vigorously that a microbial swarm bursts out of the cells into the urine. This is known as a “planktonic flare” and will lead to a acute cystitis. Not only that, but it will also result in the colonisation of all the fresh new healthy cells which are growing at the bottom of the epithelium. These flare ups cannot be "controlled" by diet. They are completely unrelated . Obviously some spicy food may make your bladder feel worse, but you will still have flares regardless of diet.
So there you have it. The Professor believes the only way to treat this is by a long term course of a specific antibiotic (individually assessed for you) which will treat the infection layer by layer by layer until the cells coming through are completely free of microbes. That’s it. Sounds simple really when it’s explained like that! I was on treatment for 11 months and I am free of any symptoms. My very last urine sample showed zero pus cells so it's worked. The urgency has gone, no pain, and I can live a normal life.
I am in regular touch with people (men too) who finished their treatment with the Prof years ago and are cured. If they get a bout of cystitis (which is perfectly normal) they take a two week course of antibiotics which kills it dead and doesn't allow it to embed in the bladder wall. The link below has lots of science to back this up and also links to various Professors around the world who are curing embedded infections which were wrongly diagnosed as I.C. They all believe as many as 75% of I.C. patients are incorrectly diagnosed. I have never felt so well and my life is back to normal. I have moved to France and drink wine every day, eat what I want and make love to my (very patient) fiance. I have my life back. You know your own body better than they do. Just because they are doctors doesn't mean they know everything. Unbelievably, very few of them stay up to date with current research which is why they recommend instillations, urethral stretching etc. It's their 'Job" to make you feel better, so in many cases it's a "ticking off boxes" exercise! Utterly barbaric and unnecessary! Unless they can give you a % guarantee it will help you, why do it. I bet in the same situation they wouldn't!! I found my cure by a random post on FB like this. I hope this helps someone else now.
Michelle Brûle was diagnosed with interstitial cystitis and had it cured by Professor Malone-Lee in London, UK. You can find Michelle's original story posted on Facebook here in the "Embedded UTI Support/Advice Group" (it's a private group so you may not be able to see it there unless you join the group). She also has her story published on Chronic UTI Australia which is viewable to the public. She has welcomed IC and chronic UTI patients to reach out to her. You can find her on Facebook at: https://www.facebook.com/michelle.brule.75839
Michelle also advises that we read Chronic UTI Info's Testing & Treatment for a Chronic UTI infection.
To read more interstitial cystitis cures by other patients on my blog, visit my category "Success Stories".
If you are an Interstitial Cystitis patient or long-term UTI patient who has healed, please send your success stories to me on Instagram at @vancouverutigirl so I can publish it to give hope to others! You can choose to send anonymously as well, but I must be able to verify that you are real This is to avoid false stories from urology clinics pretending to be healed patients. Thanks.
To read more interstitial cystitis cures by other patients on my blog, visit my category "Success Stories".
If you are an Interstitial Cystitis patient or long-term UTI patient who has healed, please send your success stories to me on Instagram at @vancouverutigirl so I can publish it to give hope to others! You can choose to send anonymously as well, but I must be able to verify that you are real This is to avoid false stories from urology clinics pretending to be healed patients. Thanks.