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jodiette

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Reply with quote  #1 
Does Dr M-L use cystoscopies?  I've been told he never does, but totally relies on urine tests and history.  Is this the case, anyone know?  thanks.. Jo
Moderatorsusan

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Reply with quote  #2 
No he does not use cystoscipies. If you contact the BHUK office on Monday they have more information and a patient paper he has written that gives info about the clinic. He has seen too many patients who have had rounds of cystoscopies often worsening already inflammed and infected bladders. Unless there is a genuine anatomical need for investigation, indication of kidney stones, growth or blockage on ultrasound, X-ray or MRI scan, concern due to a family history of cancer or indication of bladder cancer on testing in which case he would of course urge the patient to have an investigation, he encourages patients not to have them after taking a full patient history, listening to their symptoms symptoms and the urine microscopy that he uses to diagnose infection (not the same as standard urine testing that GPs and Urologists use looking for bacteria).
jodiette

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Reply with quote  #3 
This is what I don't understand.  Enough people are hurt by cystos that it's not something to undertake at the drop of a hat.  M-L's approach seems like the correct one.  "First do no harm", right?  
What confuses me is why other specialists don't follow M-L's protocol?   Is it top secret or something??   

Those working in the NHS might be hemmed in by out of date protocols but that shouldn't stop private specialists going their own way.   I've seen 2 private specialists so far, first was straight in with wanting a cysto, 2nd held off while I did scans /swabs/various urine tests (including urine cancer test which was neg), then he also wanted a cysto.    Even Dr VK does regularly does cystos.    Why, if there is so little need?  [confused]

Moderatorsusan

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Reply with quote  #4 
Where to start with all of this.

1. Lets start with the standard testing in use for 60 years, its flawed, proved to be flawed and is still the guide for all treatment protocols when you first see a specialist. They will do a sample and guess what it usually comes back negative. So next step on the script.

2. X-rays and Ultrasound to check for stones, strictures, physical abnormalities etc.

3. Urodynamics for frequency - if abnormal then likely to be an OAB diagnosis.

5. Finally (and this may actually be point 3 if urodynamics not used), the cystoscopy. Now hopefully something has shown up in points 2 and 3 and there is a need for a cystoscopy or if there is a familial history of renal or bladder cancer or cancerous indications have been found on non-invasive testing then a biosopy of the bladder wall must be done. Otherwise a cystoscopy seems to be the final part of the script usually offering not that many answers other than possibly inflammation in the trigone. But where has that inflammation come from - it doesn’t come from nowhere and yet IC and bladder syndromes are known as ‘diagnoses by exclusion’. They don’t identify a reason for a patient’s symptoms, they simply describe collections of symptoms. For example, the NHS Choices website describes IC as a “poorly understood, incurable condition”.

There is no agreed cause or cure for IC and bladder syndromes. But there is a view among many doctors – based on tests which are known to be ineffective – that they are not caused by bacteria and it is this that remains the standard because the testing says no. If the tests are negative then you don’t have an infection. Additionally most urologists including private ones are not involved in clinical research programmes into IC or associated bladder issues so simply follow the guidelines provided by NICE or the European Urological association. This helps no-one especially the patient as they need a specialist who is aware of all current research and actively involved in that field for which you are there in front of them.

A growing body of evidence suggests that long-term bladder and urinary pain may be caused by infections missed by tests that don’t work. The big problem that this body of evidence is very recent, the testing hasn’t been revised in 60 years, urologists are placing overeliance on this testing rather than patient symptoms and there is a huge amount of pressure on those who challenge the norm to stick to the script because there are not the resources or sufficient need to change any of this. Additionally research is very difficult to publish as both Professor K and Prof will attest. I have spoken to both of them who have suffered countless rejections of their clinical research work by publications because it is too controversial or doesnt fit their readership.

Prof has been a lone voice in all of this for many years because he is actually a scientist as well as a clinician and is part of a team at UCL actively looking at lower urinary tract symptoms and the urine in relation to bacteria. Prof K is the same, using Imperial College for his research work into mast cells and the bladder. VK uses cystoscopies because it is the only way to identify through biopsy mast cell activity in the bladder wall. He has also used patient biopsies to look at reservoirs of bacteria hidden in the cells of the bladder wall and spoken at conferences about these findings. For him patients either have mast cell issues in the bladder because they are immuno compromised and suffer from mast cell disorders anyway, or have untreated or incorrectly treated bacterial infections.

Things are starting to change, its very slow but organisations like BHUK are campaigning to change the testing, the collection of urine samples and promote specialists such as VK and Prof ML because of their active research work in all of this. Even these specialists will acknowledge its the patient voice thats going to bring about change. More funding into UTI is desperately needed, its an orphan area in comparison to other urological issues and because everyone thinks UTI is something that happens for a few days and then goes away, its ignored when lined up against other health problems. However if 48% of sepsis issues are due to UTI then it should not be ignored.
jodiette

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Reply with quote  #5 
Thanks for that reply, that is really interesting. I am seeing VK in a few days so am now clearer about what's going on.   But  "countless rejections of their clinical research work by publications because it is too controversial or doesnt fit their readership."  You know this is what makes me angry about "Scientists" because the whole point of Science is that it looks at everything objectively,  doesn't take sides or dislike something because it won't fit the current mould.  And yet this KEEPS happening.  Seems to me egos and money are at stake, and when that happens these people are not scientists any more, they cannot call themselves that.
Having suffered with Mast Cell Activation Disorder for 20 years, the same issues are still going on there, even tho good research has been available for decades and WHO gave the condition codings a few years ago, it is still dismissed as a fashionable phase by some specialists & the NICE still not properly acknowledging its existence.   Luckily we now have about 60 specialists listed  (NHS & private) so we seem to be doing better as far as getting help is concerned, (in 2014 there were 2!) and yet I bet there are many more suffering from chronic UTIs than Mast Cell disorders.  
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