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Dxb99

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Posts: 11
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: 50
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: 92
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: 11
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: 38
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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Lotti
KJW

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Posts: 23
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: 11
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
Dxb99

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Posts: 11
Reply with quote  #9 
Hi, I just wanted to update about some results/treatments that seem to be having an effect for me. I’m seeing a British gp here in Dubai who specialises more in integrative/nutritional medicine. The results of my 3 day stool test came back showing an overgrowth of 2 types of candida and 2 strains of klebsiella with very reduced number of the good bacteria like lactobacillus. This company shows both sensitivities to standard antibiotic and anti fungal and also herbal medicines. My candida strains are resistant to the main anti fungals like fluconazole, only sensitive to nystatin (which isn’t available here), but highly sensitive to some of the herbs like grapefruit seed extract, caprylic acid. The klebsiella was resistant to 3 out of 6 antibiotics listed but also had varying sensitivities to some of the herbs, interestingly low sensitivity to oregano oil but high again for grapefruit seed. We decided to try the herbal treatment route first as I’ve already had quite a few antibiotics and they would not help with the candida either. I don’t think I’m allowed to say brand names on here (?) but started on a 15days course of one that has a combination of herbs, plus some stronger probiotics. It really has seemed to improve my symptoms quite a bit already and it’s only been a week. The burning urethra feeling has diminished significantly and my frequency has gone right down. The only negative effects for me have been an increase in fatigue and brain fog and when I was in the full dose I felt a bit short of breath - I was advised to cut the dose back until these symptoms have resolved, it’s unclear whether these are ‘die off symptoms’ or just my reaction to some of the herbs but tbh it’s worth it for the improvement in the bladder.
I’ve never had a positive urine culture but obviously something is improving with this treatment so I wanted to share.
ModeratorKate

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Reply with quote  #10 
Hello Dxb99
Thank you for your update, very interesting, so pleased you are getting information on your different strains.

You CAN mention your treatment regime, that is ok to post, it is medical professional Names that are not allowed.

Do keep us updated.

Kind regards
kate

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Jude10

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Posts: 50
Reply with quote  #11 
Hi, it sounds interesting your journey with herbs! It,s great to hear of an improvement. I,ve been cautious of using grapefruit seed extract because of the research showing addition of chemicals to commercial preparations and no antibacterial effect from actual grapefruit seed extract. The chemical is supposed to cause immune system toxicity and respiratory problems which might account for brain fog and shortness of breath. However, hipprex is also pretty toxic as are antibiotics so there we go! So glad you have some relief!
Sophs50522

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Posts: 92
Reply with quote  #12 
Wow That's really interesting! I've been thinking of seeing a nutritionist and getting my stool tested. After reading lots of stories, candida overgrowth seems to the culprit in most cases.
Had a lady who advised me put cinamon sticks in hot water and drink for candida overgrowth ( bladder thrush is what she said she had )
I have yet to give it a go, curious if it would work though. Didn't think candida could be resistant to medication, even though i have no idea why lol
Thanks for sharing that information. Hope it resovles the problem for you x
MarieKex

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Posts: 4
Reply with quote  #13 
Hi, I've got similar symptoms to you. Urethral burning and stinging, worse in the mornings. Some days are better, some days are not so good. But I don't really have the extreme frequency that I hear other ladies describe, I go to the toilet a normal amount of times per day. Also only once at night, but that's normal for me. I have made an appt with the Prof and am seeing him in October, but have been put on the cancellation list so hoping to be seen sooner. I'm in Sweden, so really hoping this will be worth it. I have followed the IC elimination diet for nearly 4 weeks now and I've really noticed a difference. Still uncomfortable, but it's not as horrific as it was when I first started getting this pain about 2 months ago. Have just finished 10 days of Nitrofurantoin, but it made no difference. 

Have you noticed a difference in what you eat and your symptoms? Dying for a glass of wine these hot summer nights, but too scared to endulge. [frown]
Sophs50522

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Posts: 92
Reply with quote  #14 
Hey,sorry to hear your going through it too. I Don't really have extreme frequency. I go normal amount usually unless I'm having a really bad day. The uretha irritation is the most annoying.
I've been symptom free now for 6 days and during these 6 days i have drank alcohol 3 nights. I am almost certain ( in my case ) alcohol does not make a bit of difference. I think when having a flare alcohol makes you think it's making it worse because it's a duretic maybe?
I always urinate much more when drinking alcohol anyway.
I followed a diet for 6 weeks too and that made no difference either. The prof says eat and drink what ever you want as the diet is a load of rubbish ( his theory)
I think i may be slowly seeing the affects of the antibiotics now. Taken nearly 7 weeks though but i will get there!
Hope you get some answers with him
x
Dxb99

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Posts: 11
Reply with quote  #15 
Hi, I think diet does make a bit of a difference for me - initially when I first started having symptoms I stopped having the main IC diet culprits like tomatoes, caffeine, citrus etc, I didn’t notice a huge change at the time but then when I tried a cup of tea I definitely felt worse with the burning and frequency. I seem to be able to eat more acidic foods ok but can only tolerate a weak latte and no tea etc, a glass of prosecco has been ok but not had much more than that for a while. The diet I’m on at the moment eliminating my food intolerances has helped with ibs a lot but not seemingly made any difference to the bladder issues.
Glad to hear you are seeing some results on the ab’s Sophs, really encouraging! I’ve just contacted my dr to see what changes can be made to what I’m taking as the side effects are a bit worse which is a shame as it’s helping the bladder so would love to be able to finish the course.
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