A simple bout of cystitis changed Michelle’s life.  She went from being a happy, productive member of society, to someone who suffered relentless UTI symptoms that prevented her from working, socialising with friends and family and having a normal sexual relationship with her partner.  If that wasn’t enough, she had become a burden to the healthcare system as well.  She was quickly written-off by her specialists as being a depressed, menopausal woman with interstitial cystitis.  Her diagnosis was terribly wrong and she knew it.  Michelle kept digging and found a specialist who understands chronic, embedded urinary infections.  After being properly diagnosed and treated for her hidden infection, she experienced relief within weeks.  And after 11 months of continued treatment, she is completely symptom-free.  You can read more about Michelle’s chronic UTI story here.

 

Stop Press! Interstitial cystitis is not an end diagnosis

Eighteen months ago I was diagnosed with interstitial cystitis (IC). Before I begin sharing my story, I want to explain that it took a long time for me to discover that IC isn’t an actual end diagnosis. IC is a name for a group of symptoms with an unknown cause. Don’t stop reading—this is very important! What causes IC ‘is’ the diagnosis.

The easiest way to explain it is to compare it to dermatitis. ‘Itis’ in scientific terms means ‘inflammation of’, so dermatitis means ‘inflammation of the skin’ (derma). However, dermatitis is NOT an end diagnosis either, it’s what is causing the dermatitis that is the diagnosis, which in that case is often an allergy to something specific. The problem I’ve discovered is many people never find out what causes their IC. They believe the condition is the actual diagnosis, so they accept it and try to treat the symptoms NOT what’s causing them.

Many things can cause IC, but it is believed (from several specialists and reseachers at least) that the most common cause is a deeply embedded infection. Even most urologists believe IC is a diagnosis, but IT IS NOT. It’s hard to get your head around because they refer to it as a diagnosis all the time. Accepting this is the case could mean the difference in whether you ever get cured or not!

And so my chronic cystitis nightmare began…

My story began with a bout of cystitis three years ago when I was in a new relationship. (I’ll let you fill in the gaps…). I took the usual treatments (potassium citrate drinks etc) but it wouldn’t go away. So, the doctor prescribed a five-day course of antibiotics. It seemed to clear it up and that was that…or so I thought! A couple of weeks later, same thing again, so I ended up at the doctors with more antibiotics. This continued with gaps between bouts of three to six weeks for about six months. Over this period of time I was back and forward to the doctors. I had 25 urine tests, many of which were sent off for culturing. All showed blood, but I was categorically told I did not have an infection.

Then the real trouble began. I seemed to have developed permanent cystitis. I had urgency—one minute I was fine, the next minute I was desperately searching for a public loo. I’d wee, feel relief for 20 seconds and before I had even dressed again, I felt like I needed to go once more. I was getting weird spasms in my urethra which were excruciatingly painful and usually started straight after a wee. I found some relief by sitting in a very hot bath and gently splashing my ‘lady garden’. I didn’t find a painkiller that would really touch the pain. I also felt as if I was weeing through a narrow tube and couldn’t wee quickly if I tried. Going to the loo was long and drawn out and I never felt as if I was empty. Sex was out of the question as it would cause a three-day flare even on a ‘good’ day! Over the next few months I developed chronic back ache, and a constant ache around my waist. I presumed I’d pulled a muscle or something. I was sent to a urologist who came to the same conclusion—no infection. “Perhaps it was the menopause”, came the response. That made me pretty mad!

I had 25 urine tests, many of which were sent off for culturing. All showed blood, but I was categorically told I did not have an infection.

 

I discovered toxic chemicals in toilet paper was adding to my woes

In-between urology appointments I discovered, quite by chance, that I seemed to have a serious flare every time I stayed with my best friends in Penrith. Bizarre. My friends suggested it was a change of water, but I wasn’t convinced. One time I arrived for the weekend, busting for a wee (but in normal way, for a change) and as I used her loo roll I noticed it smelled really scented. The second I wiped, I felt burning pain. I jumped in the bath quickly (a tad embarrassing as I hadn’t even said hello to her husband yet!) and stayed in there until the stinging subsided.

I started doing some casual Googling about chemicals in toilet roll. What I found out blew me away! There are over 200 chemicals used in the process of wood pulp, even more to create the end product of toilet paper. The main ones are chlorine bleach and formaldehyde! Neither of which you would knowingly use on any vagina, let alone an angry and irritated one. I found a link to a family who had started using cotton cloth cut in squares instead of toilet roll (it’s called ‘family cloth’). I managed to source some undyed, unbleached organic cotton material and after trying many samples, I was convinced this was the best one. I cut them into 5-inch squares and machined round the edges. I bought a bin with a flip top lid (a well-fitting lid…) and I started using the cloths instead. I’d wet them under the tap, wring them out slightly and use them every time I went to the toilet.

Within two weeks, I felt so much better. My flares were noticeably less, and my periods came and went barely noticed (I switched to organic, unbleached tampons as well). If at this point you are cringing or grossed out, just think, if you got faeces on your arm, you wouldn’t wipe it with a dry tissue and think it was clean. Why is your bum any different! Anyway, I honestly thought I had solved my cystitis issues. At my next urology meeting, after a long chat, the specialist agreed that it was most likely the cause and sent me away.

My IC diagnosis was neither true or helpful

Sadly, although it made a huge difference, I wasn’t cured by any stretch of the imagination. Following a nasty flare, I returned to my urologist (a different one, again) and he recommended various invasive treatments like cystoscopies, Botox, self-catherisation etc. He was adamant I didn’t have an infection. He diagnosed IC and possibly menopausal depression. In other words, I was an ageing hypochondriac! I was not impressed, and I told him! I didn’t believe IC was a diagnosis. You don’t randomly show blood in your urine without an underlying cause. He said it was normal for IC. I told him in no uncertain terms that it was my body and it most definitely was NOT normal. If you bled from any other part of your body, would a doctor say that was normal?

My specialist was adamant I didn’t have an infection. He diagnosed IC and possibly menopausal depression. In other words, I was an ageing hypochondriac!

 

A UTI specialist finally diagnosed my hidden, embedded UTI

During this time, I stumbled across the work of Professor Malone-Lee from the University College London. Within minutes I was convinced that I had an embedded infection. I didn’t have the money for private treatment, so I joined a private insurance scheme and sat out the obligatory six months…in the bath mostly, as I couldn’t work, could barely socialise and if it hadn’t been for my very supportive fiancé (yes he asked me to marry him despite a ban on sex for at least the previous year!), I don’t know what would have happened to me.

Six months passed and I got an appointment with the Professor. I was as nervous as hell and sat quietly while he looked at my newly produced urine sample under his microscope. “I hope I have got an infection,” I said to him while he was counting. “What makes you say that,” he asked. “Because if I haven’t I think I will cry!” “Oh, don’t worry” he said, “you have one of the worst infections I have seen!”. Upon which I promptly burst into tears. He had tissues ready!

I have since discovered that it is scientifically documented that dipstick tests (globally), miss 50 percent of infections!! That’s 50 percent for crying out loud! And when a sample is sent off for culturing, the culture test misses, at best, 50 percent of infections.  Is there any wonder we are all being told we don’t have infections despite being symptomatic of a UTI!

All the urologists missed my classic UTI signs and symptoms because they relied on faulty UTI test

I saw so many urologists and they all said the same thing! The lesson here is— don’t believe everything you are told! I didn’t believe them as I know my own body better than they do. I had been recommended instills, Botox, invasive treatments and all sorts of stuff, none of which they would actually guarantee could help me at all. My urine was full of white blood cells which clearly showed my infection. The Professor promptly put me on an extended course of Trimethoprim because I had been prescribed it before and it worked to alleviate my symptoms (over short five-day periods anyway). I was also prescribed Hiprex which is a urinary antiseptic used to treat UTIs before the introduction of antibiotics. I started the antibiotic first and the Hiprex two weeks later. We also discovered that my back and waist ache, was from the infection. Classic signs apparently!

Within two weeks my symptoms started to subside. I still had dribbly wee, but the pain was going, the spasms were subsiding, and the urgency was vastly reduced.

I’m now symptom-free after three years of incredibly cruel and painful UTI symptoms

I have just finished 11 months of antibiotics and I am now free of all my symptoms. I can wee normally (I proudly filled a pint glass yesterday much to the amusement of my fiancé!). I don’t have pain, urgency or in fact any symptoms at all. I can live a normal life. I moved to France just after my first appointment and now I drink wine every day, eat what I want and make love to my (very patient) fiancé.  My dog dying recently, and various other things, has convinced me I am cured. A tiny amount of stress before would have made me ill for days. I have my life back!

Incidentally, I still use the cloth instead of toilet paper, and I have converted my Mum and my fiancé. My fiancé admitted months later that he always felt sore and bruised around his anus and suffered from tiny skin tears which were very painful. Since switching to cloth, he doesn’t get them anymore. What’s the point in avoiding using shower gels and various scented soap if you are just going to rub yourself with chlorine bleach and formaldehyde instead!

If I get a bout of cystitis in the future (which is perfectly normal), then I would take a two-week course of antibiotics which would kill it dead and stop it from invading the cells and becoming embedding in the bladder wall. Professor Malone-Lee believes this should be standard NHS procedure for UTIs and would save them billions of dollars in unnecessary testing and treatments…AND human pain and suffering!

I have just finished 11 months of antibiotics and I am now free of all my symptoms, I can wee normally and I don’t have pain, urgency or in fact any symptoms at all. I can live a normal life!

 

I am now in at least 15 IC and menopause Facebook groups. If it wasn’t for a random post on one of them, I wouldn’t have found out about  Professor Malone-Lee’s treatment protocol and be cured (you can learn more about his treatment protocol from this recently published study – share it with your doctor!). I feel I owe it to every person suffering with this to try and help. I regularly have private conversations and phone calls from women who are absolutely desperate to be cured. So far, to my knowledge, I have helped 10 women who are improving every day. I am in constant contact with them and we laugh and cry together. I have been there so I know how hard it is. The worst thing about it is coming across closed-minded people who are adamant their specialist knows everything. They don’t, sadly. It’s your body and only you know how you feel. Fight for it and never give up!

 

Now for some science explaining how chronic UTI develops

I will attempt to explain what I have learnt from the amazing Professor Malone-Lee. This is my interpretation of the research carried out by his team at the University College London, along with some paraphrasing and direct quotes from his work.

How an embedded UTI takes hold

The urothelium (the tissue lining the bladder) is usually about five cells deep, so imagine the bladder wall is a 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 is said to contain at least 550 different species of bacteria swimming in the urine. Researchers say it’s 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 urothelium and, in some cases, enters the cells themselves. This is called ‘intracellular colonisation’. Research in mice has shown that when the infection is treated aggressively in the first 14 days, the colonisation does NOT occur. They believe it is the same in humans. If the infection 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!).

Professor Malone-Lee says:

“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 awake and invade the spaces cleared by the powerful agents. A single dormant microbe, woken from slumber, can become 1 million microbes before sundown.

“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 doesn’t, 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 that does not achieve very much other than cause pain and white blood cells in the urine. A culture is 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.

What role does the GAG layer play in all of this?

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. This is why Professor Malone-Lee says drugs or bladder instillations which are designed to replace the GAG layer don’t work, because the GAG layer is still there. He highlights 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.  He concludes there is no coherent pathophysiological reason why bladder instillation treatments should work.

Professor Malone-Lee says:

“The inflammation and the increased number of urothelial cells will also thicken the wall of the urethra. This causes a degree of obstruction and thus we find that the most sensitive symptoms of infection are the voiding symptoms: Hesitancy, reduced stream, intermittency, terminal dribbling, post-micturition dribbling and double voiding. Some surgeons recommend urethral dilation as a treatment, but that is to confuse cause and effect: The voiding problem is not causing the infection it is the other way ‘round.”

Why traditional IC treatments fail

A similar cock-up happens when doctors assume that incomplete bladder emptying needs catheterisation to solve it, but the infection is still there. According to Professor Malone-Lee’s team, there is no scientific evidence that says any urine left in the bladder after a wee will cause an infection. NONE! 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, try to distend the bladder to open it up. This pisses off the bladder even more and it shows its disgust by bleeding. The consultants feel this proves their interstitial cystitis diagnosis, but the infection remains, still undetected.

Professor Malone-Lee says current published literature shows no evidence of benefit from cystodistension or urethral dilation. Some surgeons cauterise these lesions, but to rid the infection by this stage you would have to burn the whole bladder!

Bacterial biofilms further complicate an already complicated infection

Now we get onto biofilms. Biofilms 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, when looking at the new science, drinking loads of water will likely not help. 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 by my specialist to step away from over drinking 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. Drink enough for your urine to be straw coloured, no more.

The cycle of an angry immune system and planktonic flares

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 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 in any way, shape or form. They are completely unrelated which is why sometimes you can eat something and be fine, and sometimes you can be rolling round in agony! Food does not make any difference to the infection but may cause some symptoms because of acidity in an already inflamed bladder.

How do you treat a chronic UTI?

So, there you have it. The Professor believes currently 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!