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Sophs50522

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Reply with quote  #1 
Hi everyone. Just thought I'd post here and share my story and see if anyone can relate to my symtoms but before i start i Will say that I have an appointment booked with Prof ML in June. ( bit of a wait yet[frown] )
Anyway do this sound like a biofilm infection?
Back in November I started having what felt like a UTI, discomfort after urinating, bladder discomfort, slight burn in uretha. I just assumed it was a mild one and it will pass. Week later it was still there, so i went and bought some cranberry juice and chucked down loads of that, symptoms still there after a few days so i went to gp. Urine dip stick clear, culture clear. So they referred me for bloods to make sure kidneys are okay and they come back fine. Gp suggests OAB considering IC is very rare and usually more painful. I've got a renal scan now tomorrow and if that comes back fine I then get a referal to a urologist. My symptoms some days are OK but others are unbearable regardless of what I have eaten and drank.
I do find alchol really irritates my bladder but i am assuming with it being inflamed already of course it would. Coffee is fine though.
Anyway I've had this for 3 months. And its been pure hell for me [frown] are nhs urologists aware of biofilm infections? Would they try and treat with antibiotics ? Or would they just go straight into a cysto and ignore that it could be any infection at all ? Do they check for infection themselves and is it more accurate than the lab ones the gp sends off ?
Sorry for all the questions. But this is why I've booked up to see JML in June because I'm worried they are going to fail me and assume it's IC.
I've never ever had a bladder issue in all my life. I was under a LOT of stress this passed year so my immune system is probably really down. That's all I can think of. Also is there anyway of helping to treat this infection naturally?
Sorry for ranting but i am just at my witts end with it all now [frown]
Moderatorsusan

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Reply with quote  #2 
Hi there

I’ll try to answer your questions as best as possible

At present there are two NHS hospitals where treatment for biofilm/embedded infections takes place. If you have called the BHUK offices then you will have details of this. Biofilm and embedded infections are becoming more common in research literature over the last 5-10 years as more is understood about bacterial infections in the bladder and more importantly the urinary microbiome. However all this is evolving with much more research to be done. In hospitals they are well aware of biofilms because of indwelling catheters etc and the acquired infections these create. At present NICE has no guidelines for recurrent and chronic infections so treatment is based on acute infection, that is 3 days of antibiotics.

I would be very wary of dipsticks and current urinary testing as it has been proved to be horrendously flawed in terms of diagnosing infections. Every few months a research paper is bought out discrediting it. You may want to consider doing a private urine test where you receive the results directly. NHS and private specialists as well as all GPs use exactly the same method of testing where the urine is culture for 18 hours and only fast growing bacteria are identified. Infections are now known to comprise of more than one bacteria but multiple pathogens are identified as contamination. The global standard has never been proven for UTIs only kidney infections, yet it stands nearly 60 years after Kass published his research. The private urine test I have previously mentioned will culture for a longer period of time if on first examination of urine they find markers of infection i.e. blood, protein, white blood cells or fast growing bacteria. If not, then they won’t culture for longer.

Prof ML uses a different method of urine culture which is microscopic examination of fresh urine to check for White Blood Cells and Epithelial cells. The white blood cells are important because they show inflammation which is indicative of infection and epithelial cells show the immune system response in shedding cells from the bladder wall to prevent attachment of the bacteria.

Couple of things to be aware of with regard to your state of health

If you have been under significant stress either physically or mentally this can seriously impair the immune system putting the body into an inflammatory state and disrupting the good gut bacteria. The stress can cause IBS like symptoms and as we know any stomach upset etc. can easily allow bacteria to get into the urethra.

What’s your method of birth control? If it’s a Mirena Coil or Progesterone only pill then this can seriously reduce your oestrogen levels which are vital to maintain good vaginal and bladder health. Oestrogen has antibacterial properties and also keeps the vaginal PH in balance preventing overgrowth of infections such as bacterial vaginosis or fungal infections such as thrush. It’s one reason why a lot of women as they approach the menopause and through it suddenly develop regular UTIs because of a lack of oestrogen and changes in PH to the vaginal flora. I’m also aware in talking to one urogynaecologist who has seen many young women on the coil or progesterone only pills develop marked urinary symptoms because the progesterone overstimulates the smooth bladder wall into thinking you need to urinate and you get that need to pee feeling. It’s one reason why bladder ladies report an uptick in symptoms in the latter half of their cycle.

I assume the GP has checked you for thrush as well as fungal infections can mimic UTIs. You don’t need a cottage cheese discharge for it to be thrush.

In terms of naturals, D Mannose is good for gram negative bacteria such as e coli, Uva Ursi, Grapefruit seed extract and oil of oregano are all used against infection. OOO is particularly good for fungal infections as well. If you do a search on these forums I’ve provided details to a number of people as your symptoms believe me are not unusual.

Good luck with your appointment in June. Ask his secretary to be placed on the cancellation list as they do come up regularly.
Sophs50522

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Posts: 92
Reply with quote  #3 
Thank you so much for that information. That's really useful. I guess that nhs referral will just be a waste of time. I'm so scared to be just Palmed off with bladder relaxants and them sweeping the problem under the carpet.
Yes I am on the pill. It's ethinylestradiol/ decongestrel. Is that progesterone ?
That would make more sense as im always stopping and starting it where I miss days.
I am 100% certain this has all be caused by stress. It started off back last year. I had a really tough year. I moved to a house that needed renovating, had a baby that had reflux and milk allergy and all she did Was cry and on top of that I also had a 3 year old ( now 4 ). Back in August I started suffering anxiety and ptsd from a awful incidence that occurred when I was pregnant and that developed me to having health anxiety. I started having head pressure, eye floaters, self detachment from the world etc. Was really awful. Few months after that I started to become better, so better in fact I went back to work after being off for maternity plus sick leave. After my first week back i started getting getting indegestion. ( felt really sick after eating ) everytime.
So my GP prescribed omeperozle for 4 weeks.
I had no improvement so i stopped them and it seemed to go away on its own. By this point I thought right im back on track to recovery. Then bam! Week later I started having discomfort after peeing and it all went from there. So yes stress was huge. Really huge!
I am gutted to say the least. I feel like it can never be cured and I will be like this forever [frown]
X
Moderatorsusan

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Reply with quote  #4 
Oh you really have had an awful time of it haven't you.  Don't worry many bladder issues often arise from chronic physical or emotional stress.  You don't realise how it affects you until the immune system is so depleted that the slightest health blip causes a sudden issue.  Add to that you had recently had a baby so hormones were all over the place anyway and I assume you were catheterised during the birth, you really have been up against it.

I would suggest a number of tacks -

I'd see your GP regarding the hormones for a blood test just to check where things are post partum.  Also worth asking for a thyroid and general blood test in case of anaemia or a thyroid problem.

I'd also ask to be referred to see a PTSD counsellor for a course of counselling (if this hasn't happened already).  You need to talk with someone to help with the anxiety either through a course of CBT or other methods.

Talk to family and friends and ask for their support especially if you are feeling very isolated.

Try to eat well and build up your immune system.  Its really hard with a young family to cook from scratch but at least try cut the crap out and not overdose on sugar.  Easier said than done in the dark days of winter but sugar feeds bacteria in the gut and eventually the bladder and can also cause fungal infections.  BHUK have a nutritionist that you could talk to about some ideas or perhaps you have a friend who has studied nutrition that could help you with a plan to build up the immune system.  Don't worry this doesn't mean turning into a nutribullet queen living off Quinoa and Avocados but you'd be surprised what carbohydrates and sugar can do to the body and in turn the immune system especially as stress will have killed your cortisol levels.  Also take a really good high dose probiotic to build up the gut bacteria.  Its the gut that keeps the body ticking over and if the bad guys are in control there, they are in control elsewhere.

You will be in good hands with the Professor and I can tell you that you are not alone in what you have gone through especially with regards to the stress and anxiety leading to bladder infections developing.  Who knows by taking a whole body approach, the infection, if it is one, may resolve without having to take many months of antibiotics.
Sophs50522

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Posts: 92
Reply with quote  #5 
I really do feel like someone is testing me to see how much stress one can take. It makes me so miserable, especially when I thought I was getting better. I'm only 28 and I really love a good wine and cheese night. Can't even do that now [frown]
I've had full bloods done. Including thyroid. I've also had coeliac bloods done too.
I'm currently having councelling for my ptsd ( caused by nhs for giving me wrong information )
I'm going to buy probiotics, I've been assuming I've had yeast overgrowth and this is why it's causing me bladder problems along with my previous feeling sick issues but i just don't know.
Should i get the 20 billion live bacteria or high strength 50 billion?
I've also got candida supplements in my basket that contain grapefruit see extract, oregano oil, garlic, cinnamon etc. Will these be okay?
How about food recommendations?
I also went to see a Chinese doctor who told me it sounds like i have sticky mucus on the bladder wall and I need to keep flushing it with homemade barley water and stick to a strict diet. He said he could give me some chinese medicine. They are drink powders but they come at a cost. Might go back and give them a go to be honest.
I didn't have a catheter on my daughter. I had a natural and surprisingly painless birth. Lasted 10 minutesmibutes. No stitches or anything. She is 1 now and such a happy baby. Nothing like the first 8 months or so thankfully.
Your really helpful! Thank you so much!
Sophs50522

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Posts: 92
Reply with quote  #6 
Sorry forgot you did mention diet tips.
Your right I dont really eat as healthy as i should. So that doesn't help at all!
I will stick to Chinese doctors diet list and see how I get on with the powder and supplements!
I hope that's the case with the antibiotics too! X
Annabel1979

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Posts: 44
Reply with quote  #7 
Hey there.. Ive been treated by DR V.K.. Im 90% cured with treatment for mast cell activation syndrome (Histamine reduced diet that cuts out 'histamine liberators', rantadine, clarityin and ketotifin).

I have a appointment with the same doctor you are seeing this week.. I'm debating whether to go seeing as my symptoms are nearly gone, but interested out of curiosity (and because i've waited so long) to see him. So keep you posted on what he says.

But i would recommend seeing the doc i have recommended. If you google histamine and the bladder, you will see a paper he has written for the NHS. I mentioned to him i was seeing PROF M, and he said he wasn't surprised if i also had some hidden bacteria. maybe it's both and that's the extra 10%? Who knows. .it's a bit of mind field isn't it!?  But i would check out how your mast cells and histamine have created inflammation in your bladder etc.

good luck!

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Annabel fox
Annabel1979

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Reply with quote  #8 
Oh PS  i had six months of terrible pain, and same with me all triggered by stress... and a UTI which was treated with antibiotics just continued to be painful.. apparently stress creates histamine which creates inflammation which creates stress etc as well so it's all kind of related and a viscous circle.  Mr V.K said that basically my cells/ immune defense to infection went 'pear shaped'.

Let me know if you want to know the doc i saw or want more info on the diet (but that depends on whether you are histamine intolerant or have MCAS

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Annabel fox
Annabel1979

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Reply with quote  #9 
Sorry, finally, I decided to be careful with urologists that want to whip you in for laparoscopies and cystoscopy. The first one i saw was convinced I had IC (which i have since found out is apparently  incredibly rare and most of the time misdiagnosed) but after reading, and speaking to current doc he said that this procedures should be last resort as it can cause more pain and upset. It's so hard with everyone having a different opinion (ive been told i could have endometrosis, urethral syndrome, IC, a hormone imbalance, the list goes on). and the NHS have been useless and haven't been able to give me one specialist appointment..

But 3k pounds later I am on the mend, so dont regret spending that (i would have sold my house to get rid of that pain). But feel your frustrations with this incredibly confusing and upsetting condition, but i do believe there is no such thing as incurable disease AKA IC.. you just need to find the right treatment 😉




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Annabel fox
Sophs50522

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Posts: 92
Reply with quote  #10 
Hey Annabel. Thank you so much for that information. It's good to weigh out other possibilities. Mine was most certainly triggered by stress as i havent had anything else that could have possibly set this off. Not even an actual infection either.
Could I have more information on the diet please? I'm willing to give anything a go. Did you take anti histamines also ?
It's really strange, my symptoms can be really irritating for a few days and then calm down for the next. It's like my body don't want to heal.
If Prof M don't find a biofilm infection I will give V.K a shout. I think I know which one you maybe be talking about.
It is very frustrating. I just wish i could have a glass of wine and unwind and forget about stress but this problem stops you from even being able to do that *sigh* [frown] x
Jane_B

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Reply with quote  #11 
I’m so much better than I was seeing the prof and also an acupuncturist based in Blackheath. As
Jane_B

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Reply with quote  #12 
Sorry pressed reply too early 😖 as Annabel says ic is really rare and if can be horrible and scary if people say you’ve got it. Acupuncturist explained bladder symptoms like having “tummy ache” ie can be a whole host of causes but ic makes it seem like one thing. You are in good hands with the prof. Also I can drink white wine and beer now and eat loads of stuff I couldn’t before. I promise you it will get easier. I know that feeling so well of it being unfair and just so bleak. But there is light at the end of the tunnel.
Annabel1979

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Reply with quote  #13 
HI there.. so i saw the prof.. really liked him but very conflicting views. from all doctors! will try his recommendations though. He didnt find bacteria (said i drank too much water oops) but has put me on hiprex for a month and see - he said there most prob is bacteria there but is REALLY hidden.

Anyone had experience of this? I have to say it's a little bit stingy! but that's because he said its' working. am still a bit scared of having wine / citrus etc as every sensitive bladder forum says to avoid.. we will see!

Great to hear everyone else's encouraging reports of him... but one thing they all agree on is that STRESS is the biggest flare up and contributor...

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Annabel fox
Sophs50522

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Reply with quote  #14 
Hey Jane, I'm really pleased about the positive responses from this thread. I'm really really hoping I can drink wine again some day [frown] I'm having a really bad day today and have done nothing but cry. How all this have just come out of no where.
What is it that you have jane?
What would an acupuncturist do may I ask? I could definitely look into doing that if all else fails.
I pray there's light at the end of this tunnel I really do.
At only 28 I think I'm struggling with it more than I would if i was in my 50s. I know it's not nice for anyone to go through but being older I think I could accept it more as I've got my two little girls who need my full attention which I can't give with no patience with this. * sigh *

Hey Annabel. I wonder if the hiprex will help you. I've heard about that. Hopefully that can get you back to 100%.
Do prof ML not deal with mast cell activation?
There's just so so many conditions it could be I just don't even know where on earth to start.
X

Jane_B

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Reply with quote  #15 
Annabel I agree about the stress thing - everyone I’ve seen about this agrees it’s the biggest contributor. I sometimes get stinging on the hiprex and recommend drinking half a teaspoon of bicarbonate of soda in at least half a pint of water.
I have a biofilm infection which started with my first ever bout of cystitis in may 2016 when I was severely stressed with work and life. It would go away with a short course of antib’s then return when I came off them. Saw some idiots one of whom suggested it was psychological and finally found prof after 6 months. Some people don’t see him til they have been ill for 30 years. I am now much better than I was. It does oscillate as it goes (which he says it will) and you do have to dig incredibly deep to find the patience and strength to get through it. If you want the details of my acupuncturist let me know. She’s based near Blackheath in south London. The prof nukes the bacteria whereas she starves it of sugar with her diet (which I can’t go on til I’m off the prof tabs). The acupuncture is to calm the system and take it out of fight or flight mode. She was recommended to me by someone on here and I’m so grateful. She’s very kind and has been through similar and recovered so she gets it. Sorry you have been feeling so full of despair about it. I completely get it and I’m sure everyone else on here does too. I promise you it will get easier once you find the right person to treat you. You will not be fighting something you don’t understand in the darkness.
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