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heathwhit

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Reply with quote  #1 
Would i have symptons every day if i had a biofilm.All tests come back negative for bacteria.I have symptons every day stinging burning no relief after voiding, now suffering from acute anxiety.

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H.M Whitworth
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Reply with quote  #2 
If bacteria have appeared from the biofilm or embedded infection and are active in the bladder then yes, you could well have daily symptoms.  Biofilms by their very nature mean that bacteria flux in and out of them regularly setting up flares as the bacteria produce toxins causing inflammation.  Anxiety itself can be a trigger particular with the high number of bladder mast cells that there are producing histamine which is a food source for bacteria encouraging bacterial growth.  An antihistamine can calm the histamine release and can be taken regularly.

I think we have previously advised that you may want to consider getting a better urine sample taken than that your GP provides.  The Bladder Health UK office can give you details if you call them and can advise options.  It will cost money but may give a more detailed analysis as a longer culture can be requested than the standard 18 hour.  I know you are post menopause so have you discussed vaginal and urethral atrophy with either your urogynaecologist or urologist?  The atrophy can cause burning and pain on passing urine as the skin is more fragile and sensitive with the nerve endings being exposed.  If diagnosed, your urogynaecologist should be treating you for the symptoms of vaginal atrophy after examination  Additionally a good barrier cream such as Hydramol can help the skin and set up a barrier against the stinging and pain you are experiencing.  This cn be bought over the counter in Boots as well as a bath and shower emollient.  Its completely natural with no additives or fragrance. If you haven't been referred I would ask your doctor for an urgent referral so you can seek investigation and receive treatment.  
heathwhit

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Posts: 191
Reply with quote  #3 
Thsnk you so much for your reply, you have given me plenty to discuss with my doctor nrxt week.The urologist i saw just said cystoscopy and instills which i don't really want.i am going to ask to see a urogaenologist to discuss thde things you have mrntioned.I hsve had a private test with medicare but not the longer one, that came back as inflammation which could be infection but not sure, i will try the longer one.This really is not on not long ago i sent a sample which was tested by nurse she rang to say i had infection but when tested at the hospital they said not, i really do give up so still no abs.thanks again for your help.
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H.M Whitworth
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Reply with quote  #4 
If you decide to use the longer culture again, please order online as this gives you an option to request a longer culture and the reason behind this request after you have added this to your basket for purchase.  If ringing, they will not give you this option and simply send you the kit and you cannot write on the form provided.

Good luck with your GP appointment, hopefully they can refer you to see a urogynaecologist and you can get some help with your ongoing symptoms.
Sarah1975

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Posts: 29
Reply with quote  #5 
Hi Heathwhit
I just wanted to say that I totally empathise with the acute anxiety you are suffering from as I am the same.  I too have symptoms every day, mainly stinging high in my urethra (bladder neck) just prior to voiding and when my bladder contracts when it's full (ever since my first bacterial infection last July).  I had a broth culture done and am currently taking Nitrofurantoin and have been for several weeks but the stinging hasn't subsided. My urologist wants to do a cystoscopy and hydrodistention but I've not gone down this route yet hoping the abs will work. I've had a particularly bad day anxiety wise today, my appetite is completely gone and I feel sick and panicky.  I made an appointment with the specialist mental health Dr at my surgery so I'm hoping she will help me to better deal with this horrible situation.  I'm trying mindfulness but I've not had much luck so far.  I know how isolating it is feeling this way and there are times when I think I just can't deal with it any more.  Sorry I haven't been any help but wanted you to know you aren't alone in feeling this way.  I hope you find some relief soon.  It would be good to hear from anyone who has any tips on coping mentally. 
Moderatorsusan

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Reply with quote  #6 
Don't forget that BHUK have support groups all over the country so rather than feeling isolated with these issues, you could contact the office and see if there is one local to where you live.  Many have found real support in talking about coping with bladder issues and the relief at finding out there are people to share their concerns with has helped enormously.  Please don't feel isolated because of your symptoms.

The office is open Monday to Friday between 9am and 2pm and there is a message service out of hours or if your call is not immediately answered.
Amypip

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Posts: 11
Reply with quote  #7 
Dear Susan (moderator)

How do I find out if my urinary infection is due to Biofilms or not ? Or is this just the possible diagnosis if several courses of relevant antibiotics don't work ?

Thanks

Amy
Moderatorsusan

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Posts: 932
Reply with quote  #8 
The current standard testing used by GPs, Physicians and specialists globally is flawed and it is believed that up to 50% of infections may be undetected which has led to the development of these embedded infections.

A number of specialists are now using more detailed protocol methods as they have found the current testing simply inadequate. These tests can include a longer culture time or different urine microscopy and/or the analysis of blood samples. In addition to this analysis, these specialists believe symptoms are as significant as test results understanding that the urinary microbiome is an evolving area of research and pathogens grow at different rates within the urine. Standard analysis will only look for the fast growing bacteria which may be causing some of the UTI symptoms but not all. In killing off or reducing one fast growing bacterium, it may not account for other bacterium undetected. Hence the importance of patient symptoms as different bacteria produce different symptoms as well residing in different parts of the urinary tract and experience has shown that over reliance on test results is not sufficient.

Biofilms make it extremely difficult for standard testing methods to initially detect the infection within the bladder wall and then, when the infection is detected using enhanced research laboratory testing, it is extremely hard for current low dose short term antibiotic treatment to penetrate the biofilm and eradicate the bacteria. The negative charge of biofilms restricts entry of some antibiotics, while other antibiotics are neutralized by specific biofilm bacterial enzymes.

How are chronic UTI infections treated? Currently the mainstream medical treatment for these infections is long term, often high-dose antibiotics that are specifically prescribed based on the results of culture or urine microscopy, blood tests and most importantly and given equal weight in diagnosis and treatment, patient symptoms. Alternatively, if there are issues with antibiotics, natural treatments are available through the guidance and management of a qualified Naturopath, Functional Medicine Doctor, Chinese Medicine Doctor or Herbalist who understand and recognise there is a difference between acute UTI attacks and a chronic infection. These practitioners will also treat the body holistically often working to diagnose and treat the underlying causes of health issues not just in the bladder.

In future, it is hoped that new in-bladder treatments to penetrate the bladder wall and eradicate embedded/biofilm infections will be offered and these are currently in research development. This will place less reliance on antibiotic usage, something that will benefit current and future chronic UTI sufferers.

The BHUK office have a detailed pack they can send you with papers written by a couple of the specialists treating biofilm infections so do call them in the morning. A lot of issues with the bladder can also have other causes such as a tight pelvic floor, problems post birth or following pelvic surgery such as Hysterectomy. Hormones can cause a number of issues alongside severe gut problems - certainly gut dysbiosis plays a part on the body's overall immune system which can cause systemic infections to take hold. Additionally spinal issues can impact the nerves of the bladder. Sadly it can mean following several parallel paths at the same time to bring everything together.
cattyp

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Posts: 7
Reply with quote  #9 
Hi there have you tried dessert harvest aloevera I have had ic for 20 years its the only thing that helped changed my life
cattyp

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Posts: 7
Reply with quote  #10 
Please try desert harvest aloe vera I have had ic for 20years this changed many life
Amypip

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Posts: 11
Reply with quote  #11 
Thanks for your detailed reply regarding Biofilms; that's really helpful. I'm going to try taking the natural approach first with Chinese herbs and see if I can get on top of it that way, as my immune system is so weak, I'm reluctant to take long term antibiotics.
Amypip

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Posts: 11
Reply with quote  #12 
Thanks cattyp suggesting desert harvest aloe Vera. Do know where I can buy it ?
Moderatorsusan

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Posts: 932
Reply with quote  #13 
I would contact this company on Monday. They are UK based and stock Desert Harvest products. They are very helpful and geared up for IC. Their founder struggled for years with bladder issues.

https://www.tinypioneer.co.uk
Amypip

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Posts: 11
Reply with quote  #14 
Thank you Susan for the link
cattyp

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Posts: 7
Reply with quote  #15 
Your welcome contact the desert harvest website they do sales June and Dec the tablets can be quite expensive to start off with depending on how many you have to take to get rid of the horrible burning I only take 3 daily now the most I took one day was 18 which is allowed follow the instructions and you will know your self how you feel they have done the clinical trials and I have emailed pat the company CEO who answer any of your question s or one of the girls that takes your order I don't want to get your hope s up as I know how horrible the pain is but pat reckon s most people get some kind of relief PS even though its they remove the anti thingy s that cause a laxative effect I did have some atom upset which lasted a couple of wks but well worth it I just took 150mg of ranatidine x 2 daily I am happy to answer any questions x
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