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Babot

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Reply with quote  #1 
Hi All

First post - finally worked out how to do this.  After a couple of years nagging my GP to refer me to a Urologist I went to a London Hospital last June.  I had been suffering from regular cysititis/episodes, plus occasional leaking, and frequency urinating and never feeling I had emptied.

I was booked in for Urodynamic Testing.  On the basis of the results, there and then I was taught to self catheterise.  It has been hard getting to used to this but I now do it 3 times a day most of the time without any difficulty.  This has taken a while. But it has resulted in me not leaking, drop in frequency and generally feeling more comfortable.

However, post the Urodynamic testing I developed an infection which took 6 weeks to get on top of.  A variety of anti-biotics, a cancellation of a holiday overseas and generally a miserable summer.  When there was finally a break in the infection, I had a cystoscopy and a biopsy as alterations in the bladder wall were apparent.

Thankfully no cancer but I was told I had follicular cystitis which was explained to me as an embedded, chronic infection in the bladder wall.  Since the cystoscopy I have been almost permanently on abs on a preventative dose on a variety of abs since despite taking them, I have developed a few infections.  Since March I have been on Hiprex twice daily as well as the once a day dosis of abs.

At my last visit to the hospital they have suggested some PTNS treatment.  From what I have read, benefits are relatively short term, it is aimed at treating overactive bladders and bowel incontinence.

I am not sure it entirely addresses my symptoms and I feel a little like I am just getting a blanket offering of one of the treatment options.  The more I read about biofilm infections, I wonder if that is what I have.

I am not sure how they are detected?  If it was a biofilm infection, would that have been apparent from the biopsy last year?

Any light anyone can shed would be welcome.  There appears to be very little information about Follicular Cystitis available.  My GP certainly had not heard of it.



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Babot
ModeratorKate

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Reply with quote  #2 
Hello Babot
Am pleased you have managed to post on our Forum and hope you will find much to assist you.

It may also help if you post your message in Biofilm thread and also the Cystitis thread, ( click on Categories at the top to see these threads) and do read through the posts

In the meantime ,  if you type "follicular cystitis in the search button also at the top you will see many posts some old but with info.

also do telephone the advice line as a Member of BHUK you will have so much more info available to you.

This was a link I found a while ago and also what our own website has to say.

Follicular Cystitis

Follicular Cystitis is a chronic form of cystitis characterised by small mucosal nodules and the formation of lymphoid follicles in the bladder. Treatment centres around antibiotics to control infection and a corticosteriod to reduce inflammation, such as Prednisone.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401153/

Do keep posting and I will look for further assitance for you.
Regards
Kate





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ladybarbara

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Reply with quote  #3 
Hello. I have follicular cystitis diagnosed 2 years ago.. My bladder has shrunk to100ml capacity, nothing worked and I have seen many urologists. Eventually a nurse recommended this specialist, I emailed him and he said prednisone was indeed a treatment but the underlying infection should be addressed. Nobody would prescribe it, I know it's a dodgy drug and after a lot of insistence I was put on a gradually decreasing dose of prednisone earlier this year. It worked. Frequency, burning, urgency all improved.
But, all doctors refused to put me on a maintenance dose because of the side effects of steroids. I would prefer these, properly regulated, to the pain, disturbed nights and general misery. But I will get my way!
Best wishes
Babot

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Posts: 5
Reply with quote  #4 
Hi Lady Barbara
I must say self catheterising has helped with many of the symptoms (less leaking, reduced frequency) but I am convinced the infection is not under control. I missed my prophylactic antibiotic dose last night and this morning I have pain, burning and am uncomfortable. It is very, very wearing and the more I read on this forum, the more surprised I am by what an ignored, unspoken cause of suffering bladder problems are. I admire your determination, good luck with getting the right treatment.

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Babot
BHUKOffice

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Reply with quote  #5 
Hello Babot

I wonder whether you have had one of our Biofilm Packs. If not, please do drop me an email and I will put one in the post to you.

Susannah Fraser (susannah@bladderhealthuk.org)

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Babot

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Posts: 5
Reply with quote  #6 
Hi Susannah I have had one of the packs and I have read it but somehow didn't retain the bit about how a biofilm is confirmed. I had a very frustrating hospital appointment on Monday. I queried the possibility that I had a biofilm infection and the Dr was dismissive to say the least. I was told merely to continue with the anti botics for another 6 months and come back again. When I asked for treatment options for follicular cystitis she mentioned administrating Gentiamicin gel through the urethra but it was very difficult to get arranged as GPs don't like it as it is new! Can't think why she mentioned it then! Have you heard of this treatment? 18 months of antibiotics is getting me down.
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Babot
pyelofrenetic

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Reply with quote  #7 
Babot - my understanding (as a trainee biochemist) is that there isn't really any way to tell, using current diagnostic methods that are readily available, whether you have biofilms in your bladder or a different form of intracellular infection. Since the science on this stuff is relatively new, even knowing more precisely what kind of communities your bacteria are living in probably wouldn't make a big difference to your treatment advice, at least not from most medical professionals. Sorry if that sounds a bit grim or defeatist, but the bladder is such a complex environment that there isn't even really such a thing as 'a biofilm infection' as opposed to other kinds of chronic infection as they tend to overlap and have, at the moment, similar (limited and experimental) options for treatment.
Moderatorsusan

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Reply with quote  #8 
Thought you might be interested in these research papers with regard to biofilm communities in the bladder.  As you say current testing is inappropriate for biofilm as analysis can only be done when the patient is flaring and the biofilm has "spat" bacterium out of the biofilm community into the bladder or a bladder biopsy is done and controlled analysis held in a university setting rather than a standard microbiological laboratory. There is significant research being carried out by Scott Hultgren in the US into antibiotic therapeutic treatment for biofilm infections.  Certainly the body is made up of complex biofilm structures, the most obvious being plaque on the teeth so to rid the body of all biofilms would cause serious harm but if a UTI is not correctly diagnosed and treated that can lead to the formation of the biofilm infection in the bladder. Sadly the urinary micro biome is still uncharted territory but at least there is no more assumption that it is sterile (especially given the urethral access to the outside) and its only in the last 5-10 years that research has started to emerge about biofilm bladder infections as they are increasingly noted in a hospital environment when dealing with in dwelling catheters or after hospital operation catheterisation etc.  One of the biggest problems at the moment is the failure of standard testing for UTIs as it is 60 years out of date, unrevised although frequently challenged in recent research and relying on postulates that were not formulated for UTI but for acute kidney infection (E Kass).  Its this failure of testing that is leading to increasing recurrent UTI issues which often become chronic. NICE guidelines deal with acute infections only and in the House of Commons last year the then under secretary of health acknowledged that further research and revision of guidelines needs to happen.  I've also attached a link to a research study released in April of this year where enhanced testing was used to determine a patient cohort whose infections were missed under standard testing but picked up on enhanced PCR testing.  This hopefully over the coming years will become the next generation of testing to improve diagnosis of infection so it doesn't turn into a chronic intracellular biofilm infection.

Finally an interesting piece from the Guardian in April of this year about the issue regarding UTI testing based on the research piece.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5198165/

http://jmm.microbiologyresearch.org/content/journal/jmm/10.1099/jmm.0.071746-0;jsessionid=lDlrLNuZPxmTpfS01wV6G7Qh.x-sgm-live-02

https://www.hindawi.com/journals/ab/2014/543974/

http://hultgrenlab.wustl.edu

https://www.medpagetoday.com/urology/urology/64906

https://www.theguardian.com/science/2017/apr/28/uti-test-used-by-gps-gives-wrong-results-in-at-least-a-fifth-of-cases-study-claims
Catarinamarod

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Posts: 1
Reply with quote  #9 
Hi! Could you please contact me: Catarina.m.a.rodrigues@gmail.com
I have this condition and I would like to share what I discovered and also talk with you to help myself. Please!!!
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