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...