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

[isitabiofilm]

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...

[Sparkyl1]

Hi wondered if someone could please let me know how to make an appoint ment with Prof. Malone-Lee please. Had many years of UTI infections with clear results and read here that there may be hope with him.

[Elibean]

Another late joiner to the thread...just seen it, after a few days of persisting UTI symptoms (including a raised temp, on Friday/Saturday) and a 'no white cells in urine, so no antibiotics' dipstick.

I do have blood in my urine, which makes sense of the irritated urethra feeling.

I had cystitis a lot in my teens, then not for years. Now in menopause, its back - I had a few rounds two years ago, then some frank blood in wee which prompted a cystoscopy and MRI: both normal. The urologist thought maybe a polyp, harmless and already gone.

Interestingly, I had no infections after the cystoscopy for ages - then four weeks ago it started up again. Trimethoprim, felt better for a day, then within 24 hours of stopping back it came. BUT the urinalysis was normal, no blood, no white cells

I'd be very interested in joining the FB group, if its still going?

[pinkfrocks]

Hi Elibean

I would be helpful maybe for you to treat your symptoms as vaginal atrophy linked to the menopause. It is very common for women peri and post meno to have what appear to be infections when in fact it's often caused by dryness and atrophy of the bladder, urethra and vagina. The best treatment for prevention is localised HRT creams and pessaries.
There is a lot about this here
www.bladdermatters.co.uk/

[lanavh]

Hi Ladies,

I am having the same issues, re-current urinary tract infections and its always related to sex. I have had this problem for the many years and am over the antiobiotic route. Can anyone suggest more natural approaches. Just had another infection this past weekend and it was cultured as enterococcus. I was also wondering if anyone has tried douching or suppositories with colloidal silver or something similiar. Any advice would be so welcome, as I am just getting to the point where I am scared to have sex as I dont want another infection....

Thank you in advance

[Helpforic]

Professor James Malone Lee heads a research team at Whittington hospital London. I believe he would largely agree with the view you put forward. Of all 5000 women he has seen since 1992 presenting with 'IC' symptoms such as yours (I have similar symptoms) he has discovered that every single one of them actually has a bacterial infection. None of them have an inflammatory or other condition and he argues that there is not a shred of evidence for the view that IC an inflammatory condition. He has a large body of evidence that in fact IC is as you describe – mixed bacterial infection that has colonised the cells of the epithelial lining of the bladder. Inside the cells the bacteria are protected from antibiotic and immune attack. As the infection is not planktonic as you say (free-floating in the bladder) this is one of the reasons why this chronic infection does not appear on standard NHS urine tests. In addition current NHS you're in test are woefully inadequate and missing many of these chronic infections. The only effective test for these infections is a sediment culture urine test and it was from this test that they discovered that I have the bacteria staphylococcus in my cells. I have plenty more to say on this subject and I would be very interested in hearing from you.

[blue9]

I would dearly love to hear of anyone who has found help with this problem. I've had it now for 5 years. I'm under Professor Malone Lee who is trying very hard to help me but so far it's still there. I've been on just about all the antibiotics and also tried intrevenous antibiotcs for two weeks at a time everyday. It went away with that treatment but came back again. It's not to do with sex as I'm not having any! Although I suspect that is what triggered it in the first place. I'm so sick of taking all these strong antibiotics which some cause side effects too. sometimes the thrush is so bad due to them nothing will then get rid of it except to lay off the anti's for a while. But that of course has it's effect too. I've tried all the D-mannose type things too. I feel I'm resigned to this for life. This all started after the menopause for me. Did anyone else find that?

[salbal]

Hi
I can't find the Facebook group - is it still active? Am currently suffering from a UTI that won't go away so am looking for any info I can get.

[Elibean]

Just popping in to post some info my lovely GP gave me when I was diagnosed with IC recently: apparently, there is now some research that suggests the pelvic floor contracting is linked to the pain - and that specialised womens' physios can help re-train muscles involved to relax, which helps.

GP also put me on low dose of amitryptaline, which has certainly helped too (I'm waiting for the new year to see the physio). But the main thing for me seems to be avoiding chillies, acidic fizzy drinks (tonic water seems to trigger it) and caffeine/chocolate. I don't drink alcohol anyway, or I"m sure I'd be avoiding that too.

I do find I can take a little chocolate, or one fizzy drink, and get away with it - but not much more, and no hot spicy food (which I used to love!). Its pretty manageable so far with slightly careful diet and amitryptaline - whereas last half term holiday I was literally in bed with pain, blood in my urine (no infection) and exhaustion.

Good wishes to all of you with painful bladders - its a horrible complaint, and not one you can talk about easily when people ask you whats up, I find!x

[Elibean]

pinkfrocks, thank you so much - I'm sorry I didn't get back online for a while after your post, but have just seen it. Yes, I'm using oestrogen pessaries and whilst they don't fix things they probably help - and they help in other ways anyway.

Thanks!

[Isitabiofilm]

Hi again, sorry not to have been back here... I try NOT to get sucked into MN too much these days or I would have no life.

OK so the FB group does still exist, but we had to restrict it to those who are under treatment with the two UK practitioners we know of who take this approach. One is mentioned up thread, but see below on caution on this... The other is Dr Anderson at Focus Medical clinic, who is an NHS/private GP.

The reasons for this restriction were a. It was getting unwieldy with too many people asking questions we couldn't answer and the mods were overwhelmed. b. That many people joined with intent to trash the treatment and ideas in this group. Our argument was that there were LOADS of groups discussing and supporting traditional IC approaches, so people in this treatment needed a safe space to pursue their wellbeing without having to justify it non stop. And c. The clinicians were, and still are, getting overwhelmed with women waking up to this idea. We needed to protect them a little bit.

They are progressing with (different) tracks of research and treatment options though. Both will see private patients but are very much in demand! The prof also treats on the NHS but getting referrals can be difficult.

The good news also is that the COBF is also now sharing and discussing this route, although the standard urology approach still seems not to accept it.

There is lots of work to do in better testing, better treatment options, proper trials of long term antibiotic outcomes. But we can also say we now have a lot of women diagnosed with incurable "IC" who after long terms ABs can consider themselves, if not cured, at least 95-99% well.

[Murna]

Hi there, I am under treatment of Professor Malone-Lee but have not had any results. Can you tell me how to join the FB group? I'd really like to know what kind of experience, results and timeframe others who've seen him have had. Many days I just want to quit but I live in hope that the next day will be the one where I start to feel normal.

[lilyandloulou123]

Hi, I cannot seem to join your Facebook group. I have had constant UTIs and a diagnosis of IC for 20 years, since the age of 16. I would very much like to join your Facebook group! Thanks

[Limemarmalade1]

Just saw your post but can not find your Facebook page/group?
I am desperate for help/ advice.
Saw Prof Malone Lee two weeks ago and very impressed but then he was closed down by the medical board, both private and NHS clinics. Feeling frightened and alone.

[Limemarmalade1]

Dear Murna,
Did you find Prof Malone Lee helpful?
I saw him once two weeks ago and then he was shut down. Feeling desperate and alone. Can't handle the pain ??

[Elenooba85]

Hi,

I'm suffering for years now from recurring UTIs.. Tried everything- literally everything.

Would really appreciate you letting me know whether the FB Groups still exists.

Thanks

[Csalitsky]

Hi isitabiofilm, I am new to this forum. I have been suffering from trigonitis and urethral syndrome for over a year now, which is the same symptoms of IC. I have had two experimental surgeries and have followed the IC for the last year with unsuccessful results. I am currently trying nystatin as there is some belief that it could be caused by an overgrowth of yeast in the body. I am desperate and am willing to try anything and that's how stumbled upon this discussion forum. This concept of bacteria in the biofilm is so interesting. I often wondered and was going to mention to my new specialist the possibility of a normal lab culture not being able to pick up certain bacteria. I am not totally sure either, as I would like s second opinion from this new soecialist that I have IC. I haven't been able to connect to your link to the Facebook group but would love to know more on this topic. I would like to get my urine broth cultured to see if anything is lurking in my bladder. It just makes so much sense. I hope soon this problem will have answered to all of us who suffer!! Thanks so much for the hope. I will cling to any hope Out there right now! [email protected]

[zoidforth]

I had this for four months constantly - 24/7 - and was told by every person in the NHS that I will probably have to live with it after they tried me on all sorts of stuff. I then went private and was given some sort of medicine put directly into my bladder. Six weeks later - no pain whatsoever.