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Dxb99

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Posts: 4
Reply with quote  #1 
Hi everyone, I’m new to the forum but have been following some of the posts for a while and live in Dubai. I haven’t formally been diagnosed with IC as yet but have had cystitis symptoms with no positive cultures since August last year - my main issue is urethral/vaginal burning sensation and more frequent urination. I initially had a short course of antibiotics when this first started and it didn’t resolve the issue, I had a vaginal swab done which was positive for ecoli and had 5 days of cipro in case that was causing the symptoms, but although the syptoms decreased they didn’t resolve. My gynae thinks it’s an underlying infection and not IC gave me low dose ab’s for 2 months which seemed to help quite a lot but then symptoms return again when finished. Another vaginal swab was positive for a heavy growth of enterococcus and I had a short course of ab’s for that which didn’t seem to help the bladder issues though. The 2 uro’s I have seen here, 1 wanted to do a cystoscope with hydrodistension which I refused and the other didn’t think it was IC and after a normal ultrasound and urine cytology told me to relax and do bladder drilling training. I’m currently having pelvic floor PT and seeing a functional medicine dr who has me on a gluten dairy egg free diet and supplements for gut healing.
I was wondering if anyone who has seen Prof ML in London has had similar symptoms to me in terms of mild to moderate urethral burning pain (usually between and after urinating not during) and increased frequency but not every hour etc, have had cloudy/smelly urine at times and has had the ab treatment? I’m not sure if he see’s private patients at all? I’m British btw but lived in Dubai for a long time so not nhs eligible.
Jude10

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Posts: 10
Reply with quote  #2 
Hi, I think your experience is similar to many people including myself. I am in treatment with another uk specialist and he tests urine through a different lab where my ecoli and enterococcus showed up. I am now on longer term antibiotics and improving. I despair at seeing all the women going through awful urology treatments when they probably have bacteria embedded in bladder wall, although there are other causes for these symptoms. If you look in the biofilm section you will be able to read more. My 2 bugs were not susceptible to the same antibiotic so I needed 2 types.
The website chronicutiinfo.com is great and helped me understand and find my specialist.
Sophs50522

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Posts: 71
Reply with quote  #3 
Hey, your symptoms are exactly like mine! Uretha burning but not when urinating. Sometimes feel sore when i wipe and during intercourse which makes it so much worse.
My frequency is managable. I can go hours and hours without going but soon as i pee it sets the irritation all off again or i will get a day where i feel like i need to go all day.
My urine also smells. I was diagnosed with a chronic uti by the prof and presribed anti biotics and hiprex. No improvement Yet but still early days. Been on them for 4 weeks!
How you getting on with your diet?
I got told gluten can cause a leaky gut and leak into blood stream and causing bladder inflammation but not sure if That's true or not. Think i would struggle on a gluten, dairy, egg free diet.
The prof will be well worth the travel. He have helped so many people
Good luck!x

Dxb99

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Posts: 4
Reply with quote  #4 
Thanks for the replies! Wow yep Sophs your symptoms do sound a lot like mine - it feels like you are a little bit in limbo as the symptoms don’t seem to be as bad as a lot others describe for definite IC or infection, not like a proper full blown uti but some days it’s so irritating and takes over everything. I def have some pelvic floor dysfunction - as assessed by the women’s health Physio my muscles are too tight which can definitely make the symptoms worse so working to learn to relax those and having them stretched. The diet is really hard to do but mine is based on intolerance testing so 3-6 months for excluding some things and 12 months for the dairy eggs. I haven’t noticed a big difference with the bladder symptoms as yet (only 4 weeks in) but have had no IBS at all and much less bloated tummy feeling in that time which has been great. Am going in next week to get the results of a 3 day stool sample test which looks for parasites candida bacteria etc so will be treated based on that as well which I’m hoping will show something that could be related to the bladder too.
Right well I might wait and see my results for next week and then look into how to go about getting an appointment in London - I just didn’t want to pay to fly back and then get there and be told there’s no infection - could anyone give me a ballpark of the cost to see Prof as a private patient?
I hope the treatments start working for you both soon, cheers Michelle x
ModeratorKate

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Reply with quote  #5 
Hello Dxb99
Please contact BHUK ( all details at top of Page)

They will have   ALL the information and much more to assist you.

Kind regards
Kate

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L8tti_x

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Posts: 31
Reply with quote  #6 
My symptoms are EXACTLY the same too.

There appears to be a little group of us who suffer in the same way...!

I have been under profs treatment for almost 2 years. I am pretty much symptom free at the moment but I do have bad days. He recently changed one of my abs to see what would happen and I deteriorated very very quickly. Thankfully I'm back to my original prescription now so feeling much better.

Touch wood my stomach is fine but I have started drinking kefir as a precaution really; I've grown to quite like it!

It's all fun and games xx

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KJW

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Posts: 18
Reply with quote  #7 
Hi, your story sounds very similar to mine too.  I went to see the Prof last week and I've been diagnosed with chronic cystitis too, he's really great, and it's such a relief when he looks at your wee under a microscope and starts counting all the infected cells and gives you a definitive diagnosis and treatment plan.

I am also enjoying the shop bought kefir and I'm going to my friends house tonight for lessons on making it from scratch (yes, I am such a party animal).

Kirsty

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Kirsty 
Dxb99

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Posts: 4
Reply with quote  #8 
Thanks for the responses ladies, it’s good to hear that at least something has shown up that may be treatable for you and hopefully for me too. x
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