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Any RECURRENT cystitis sufferers? Or interstitial cystitis sufferers? And/or medics/microbiologis ts who have suffered and/or have and interest in these things?

(48 Posts)
isitabiofilm Wed 09-Oct-13 14:43:42

Hi,

I am part of a closed Facebook group trying to build discussion about new research on diagnosis and treatment of recurrent and interstitial cystitis. We are really interested to find medics (clinicians AND researchers) and cellular biologists (research and path lab practioners) who have some experience of recurrent UTIs and Interstitial Cystitis. If you would like more information about the FB group, please PM me and I will send you the link, or indeed post it here if people are keen.

We would also invite other women who are suffering to come and join us for a conversation there. We have created this group because we are a small but distinctive group who are persuaded by new and emerging research that recurrent and interstitial cystitis may well be caused by bacterial biofilm in the bladder. But standard NHS diagnosis and treatment does not currently recognise this science, as it seems not to have caught up with microbiological research in this developing field. We are trying to collaborate as patients to help women who are suffering ongoing pain, invasive surgical treatments, and are faced with a lack of understanding and diagnostic options.

For example, I have suffered from recurrent cystitis for nearly 30 years, pretty much every time I have sex. I have suffered GPs, nurses and even MN telling me I must be not clean enough, or that I must be 'wiping badly'. I have had practice staff telling me there can't possibly be an infection because the dipstick showed nothing, despite the agonising pain, incontinence, cloudy red urine from all the blood, visible lumps of pus and the fact if they do give anti-biotics, instant relief occurs.

Gradually though, the bouts have begun to join together to create ongoing pain in between serious bouts, faster onset of a serious bout, and resistance (I assume) to standard antibiotics such as cephalexin.

I found some help and advice via the Cystitis and Overactive Bladder foundation, but there is a LOT of vested interest and resistance to the idea that recurrent/interstitial cystitis might be different versions of the same thing, and the Urology community has a typical profile of diagnosis and treatment that has decided (because typical urine testing shows up certain results) that bacteria is NOT involved in IC.

Some scientists and a tiny number of clinicians disagree, and a body of work is emerging on the increasing role of biofilm in infective illness. We have links to a wide range of published academic sources on our FB page outlining this, as well as some simpler explanations: in essence, the idea is that multiple types of bacteria build 'communities' within the cells of the bladder wall, that are then protected by various architectures and chemical barriers. They form 'pod-like' groups, which then effectively spread outwards. All the while, very FEW planktonic bacteria (ie those free floating in the urine) are detectable.

Alongside this, standard UTI and IC testing is based on a 48 hour agar plate, which is simply not long enough for some volumes of this planktonic bacteria to show up: which is hypothesised as the reason why many women with UTI or IC symptoms show up as having insufficient infective material in their urine.

Also, this is compounded by the working assumptions of path labs, which assume that small numbers of other bacteria that show up (eg alongside the usual culprit which is e.coli) are there by accident, ie. a contaminated sample or jar etc.. Some scientists are proposing that the numbers of certain virulent and AB resistant bacteria (in particular, for example in my case, Enterococcus Faecalis) need to be re-assessed downwards in terms of numbers needed, and better culturing techniques are needed to identify them.

There's a lot more to say, and I'm no scientist/clinician, so apologies if the terminology is all wrong, but a few international women with a very strong desire to crack this debilitating condition are gathering to try to share information and perhaps build a campaign, or at least better access to treatment. We would love to hear from you, especially if you're a science/medical professional who can help us translate the science, or help with trying to develop treatment options, or writing summaries for both patient and primary care people. It's all very amateur right now, but since we know there are millions and millions of women suffering IC and recurrent UTIs with very little chance of relief, we hope you'll help us.

And if you're a sufferer and wish to try out the evidence about whether treatment of IC as a bacterial disease might help, please come and talk to us.

We already know there is lots of controversy about this, lots of natural health people who hate ABs, and lots of people worried about AB over-use and resistance. Our group is for mutual support and information sharing about this very particular approach; there are plenty of others for you if you want to find an alternative therapeutic approach. In other words, please just don't tell us we need to wash better, or that all our problems will be solved by cranberry juice or drinking more water: if there's an alternative therapy around we've tried it, and if there's a view that antibiotics are the work of the devil, we've already heard it!

Thanks...

garlicvampire Wed 09-Oct-13 16:58:21

OK, I need a link to your Facebook group. How do I request to join?

I don't have your symptoms of blood & pus shock sad but do have a bladder problem with no evident cause.

isitabiofilm Wed 09-Oct-13 19:40:15

https://www.facebook.com/groups/550445044998746 hope this link will work to take you there directly. If it doesn't work, then try searching for the following group called 'Healing IC and BC - patient to patient support'. There is another group with almost exactly the same name but they've added 'without antibiotics' which is those who with to pursue a naturopathic approach. However as I hinted above, many of us in our group are convinced that particular antibiotic treatments are the best option while awaiting new developments.

But anyone is welcome, especially if you just want to talk to other women who have long term chronic bladder pain, frequency and/or chronic UTIs. There is also the Cystitis and Overactive Bladder Forum which is incredibly useful for information.

isitabiofilm Wed 09-Oct-13 20:20:22

I should add that IC is still a different diagnosis to UTIs. Most women who suffer from it have constant symptoms of pain, frequency, urge, pressure, and other things. Some have a permanent twinge, some have life limiting pain. Whatever the symptoms it is not well understood, with the official version being it is not due to bacteria, but with no other etiology clarified, most women with IC are pretty desperate.

isitabiofilm Wed 09-Oct-13 23:21:03

Bump.

topsi Thu 10-Oct-13 14:55:53

very interesting topic. my recurrent cystitis only cleared up after 6 weeks of abx. I had similar suspicions about a pocket of infection that was not being treated 100% and which would multiply under certain conditions. I have been symptom free now for several years touch wood, but understand the debilitating symptoms. Great you are doing research into this area x

garlicvampire Thu 10-Oct-13 15:28:12

Thanks for the link, OP.

What great news, Topsi! Can you remember which antibiotic you had?

helzapoppin2 Thu 10-Oct-13 19:44:50

I had a one off bout of cystitis. Antibiotics from the doctor didn't clear it up. I went away for a short break to Belgium, and while there I saw a pharmacist. She tutted at my antibiotics, said they didn't use that one and gave me, off prescription, a sachet called Monuril. It's a sachet of crystals you make into a drink. I think it was a broad spectrum a/b.
Well, long story short, it worked fantastically well. Sorry if this is off topic.

garlicvampire Thu 10-Oct-13 21:40:13

WHAT IS IN THE SACHET?
The name of this medicine is:
Monuril
The sachet contains 3 grams of an antibiotic called fosfomycin. This antibiotic is designed to kill bacteria (germs) in your waterworks and so get rid of any infection you have.
To make it taste nicer, Monuril also contains Sucrose Ph.Eur. (sugar), Saccharin B.P. (sweetener), mandarin flavour and orange flavour.

I'm going to ask for some, on the basis that a single dose won't do any harm. I do have some sort of ongoing problem - it's quite bad - and never seem to have an infection when tested. But, hey, what's to lose?

topsi Fri 11-Oct-13 09:17:08

I just had trimethroprim but I know that this ab is now a lot ess effective against UTI due to ab resistance. I have not heard of Monuril, maybe not easily available in this country

isitabiofilm Fri 11-Oct-13 11:04:21

Thanks for your posts: a few new people have joined the FB group so welcome if you're from MN!

Yeah, trimethoprim and cephalexin seem to be the standard ABs thrown at people with BC for 3-7 days. Some scientists believe this is part of the problem because the bacteria are not sensitive to them because of resistance, and they are given for too short a time. So the bacteria develop further resistance and regrow/strengthen.

Fosfomycin is IIRC one of the newer heavy duty ABs but even than might not 'zap' an embedded infection. Newer treatments that some scientists are working on include EMDA (electromotive drug administration of instilled products: ie. instilling ABs directly into the bladder and then using an electrical field to 'dislodge' the biofilm...) Or summat. As I say, am not a scientist wink

Some of us have pursued a 'broth culture' privately, assumptions about which turn the path lab assumptions on their head: that the minor levels of bacteria found CAN in fact cause infection and are NOT necessarily just contaminants but released in small numbers from the biofilm... Mine showed up enterococcus faecalis and e.coli. I am now on a high dose of Nitrofurantoin for up to a year! But hopefully only 3 months... The Dr also recommends d-mannose (which is a sugar that binds to e.coli specifically) and various other naturopathic products.

But what we'd really like is MUCH better science. Because the urologists and microbiologists have decided that IC is not bacterial and that UTIs/BC are not always evident on traditional urine testing, we have all these women with ongoing untreatable symptoms and embedded conditions.

No-one is claiming the science on this is infallible: there's only a few scholars and a few medics globally viewing UTIs and IC in this way. But what is needed is more trials of diagnostic techniques and more treatment options, because of the amount of suffering, not to mention the cost of all of this... But this is why we need patients to join up first to build knowledge of our options, and scientists to get more funding, and medics/microbiologists in path labs to educate themselves on emerging data...

Message withdrawn at poster's request.

helzapoppin2 Fri 11-Oct-13 11:42:58

I was on my second course of trimethoprim when I had the encounter with the Belgian pharmacist and I was in agony!
Looking at google, fosfomycin isn't widely available in the UK (for no particular reason) but can be ordered in. Hospital pharmacies seem to have it. For me it was instantly effective although I slept just about all the next day after taking it. I don't know if that was due to the strength of the drug or the sheer exhaustion of carrying on while I had this dreadful infection.
Oh, and my urine sample showed no bacterial infection.

isitabiofilm Fri 11-Oct-13 16:21:14
isitabiofilm Fri 11-Oct-13 16:32:11
isitabiofilm Fri 11-Oct-13 16:35:29

LunaticFringe, my bouts were related to sex also. My GP told me free bacteria were being 'massaged' up the urethra each time and so I should drink a pint of water, and ensure to pee an hour afterwards. This helped a lot but still the bouts come and they're awful. But what I hadn't realised until my last recent bout - which was horrific - was that I actually had symptoms in between too, but I'd kind of normalised them: that twinge that was always there, that frequency some days, non-specific pain.

I've had a couple of days on the ABs with NO symptoms all of a sudden, and it's only then I realised.

isitabiofilm Fri 11-Oct-13 16:36:53

Not everyone has bouts of UTIs of course. IC is often diagnosed via pain symptoms, frequency and ultimately cytoscopies where they look for 'Hunner's ulcers'... Our group wonders if the ulcers and bladder lining damage that is sometimes seen in IC is ALSO the by-product of bacterial infection...

Message withdrawn at poster's request.

Message withdrawn at poster's request.

isitabiofilm Fri 11-Oct-13 20:48:49

Bumping for any Friday nighters with sore bits...

This is really interesting.
I suffered from cystitis for 10-15 years, sometimes having it for weeks at a time with very short periods before it reocurred.
Very often the tests done at the GPs came back negative or inconclusive and I was given antibiotics each time I got ill, to the extent that I became allergic to Trimethoprim. I had an anaphylactic reaction to it the last time I took it, ending up with swollen airways/tongue and an emergency trip to hospital!
In the end I was told it was my 'physiology' and was given preventative ABs to take 'when I thought I might have sex'. Unfortunately, sex wasn't the only thing that caused it.

After years and years of almost permanent pain/discomfort I had my first DC and I've never had it since!
There have been a couple of times where I got what I thought was 'the twinge' but it never went further than that.

All very strange but maybe the physiology thing wasn't totally off track.
I'd be really interested to find out more about these groups.

isitabiofilm Fri 11-Oct-13 22:00:07

What a good outcome. But absolutely sure I won't be having any more DC in hope of curing mine!yeah, it's just all so badly understood and I'm sure there are loads of different factors and different versions.

garlicvampire Fri 11-Oct-13 22:08:46

I can't remember what it feels like to have an empty bladder sad It's always 'there', iykwim. And quite often making its presence violently known to everyone blush

isitabiofilm Fri 11-Oct-13 22:14:56

Garlicvampire, sorry to hear this. If you come over we can help with some recommendations of things to try. Just for a start off, have you tried any physical means of emptying your bladder fully? Like tilting your pelvis in all directions after waiting till you've "finished" then as you tilt, eg. Left, then right, forward, back.... Give another squeeze to get rid of more residual urine? Or peeing in a warm bath. Gross I know but needs must sometimes...

isitabiofilm Fri 11-Oct-13 22:16:54

The cystitis and over active bladder forum would be worth trying as well as your thing might be something else entirely and they have lots of resource bout general issues of frequency leakage urgency etc..

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