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Lisa_Harrison

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Posts: 10
Reply with quote  #1 
Hi i have recently been diagnosed with I.C and had a bladder stretch in March which has not had any effect. I have now just started on an 8 session course of IALURIL. I had my first session and instantly got an infection so my next treatment has been postponed until antibiotics have finished and cultures come back as clear of infection. I would love to know if anybody else has tried this treatment and if so what results you have had and if infections mid way through are common.

Also is it common to have bad back muscle spasms with I.C, as I am almost unable to walk at the moment not just due to the pain around my bladder but also chronic pain in my back as if the abdomen pain wasn't enough.
Thanks for all your advice
Lisa

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Lisa
ModeratorKate

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Reply with quote  #2 
Hello Lisa
Welcome to our Forum

I am sorry no one has felt  able to reply. I have found this from our website that I hope will help

http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/intravesical-medications/ialuril

Maybe next week you could contact BHUK office am sure they will have more info to assist you.

You could also try the SEARCH tab at the top of this page, there are a few comments that may help.

Kind regards
 Kate

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littlemoo

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Reply with quote  #3 
Hi there

I am new to the forum. I was diagnosed with bladder pain syndrome and had a course of the same instillations - 6 over 6 weeks. Unfortunately, they did not help me at all. About a week after the last instillation I started to feel much worse. I went to my GP and they told me I had an infection. The interesting thing is that after a 7 day course of antibiotics all my symptoms (frequency, and bladder pain, pain as my bladder fills) went away, but only for a few days, before they returned. After this experience my urologist trialed me on a 7 day treatment course of nitrofurantoin, followed by taking just one at night as prophylaxis. I felt an initial improvement, then a dip in symptoms once I was on the reduced dose. The urologist has now referred me to a specialist clinic for lower urinary tract symptoms. I am now taking Nitrofurantoin and Hiprex, but it's early days so I haven't found a big improvement yet, but I am hopeful. Did the antibiotics make a difference for you?

Best wishes

Lisa_Harrison

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Posts: 10
Reply with quote  #4 
Hi Littlemoo

Thank you for your kind response. I have so far only managed 1 out of the 8 instillations as I picked up an infection straight after the first one. I am hoping to find out today if the antibiotics have cleared it up or not and if I can resume the course. The antibiotics had no effect on the pain at all which is totally ruling my life, and i find it very hard to say if they have worked on the infection as I continuously feel like I have an infection even when tests show that I am clear so have to rely on the results. I am determined to give the full treatment a try despite being told by my Urologist that there is a high chance it may not work, any chance is better than no chance. Good luck with the Nitrofurination and Hiprex I will keep my fingers crossed for you and would be most interested to know if you get any improvement.

Best wishes and good luck

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Lisa
littlemoo

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Reply with quote  #5 
Good luck to you too Lisa, this is a truly horrible condition and I well understand how it completely dominates your life. I had repeated urine tests last year, and I was told each time that there was no infection. However they did always show that I had white blood cells and often blood in the urine too. I never had the classic stinging when I went for a pee, or cloudy/smelly urine - just frequency and constant bladder and urethral pain. I now believe that I have had an infection for the at least 18 months that has just not been detected by tests that are inadequate. I am now faced with taking long-term antibiotics in the hope of finally getting rid of this infection, I have to be hopeful that it is possible. 

I hope you find some relief soon, and if the instillations don't help it might be worth pursuing the possibility that you have an embedded infection in the bladder, the forum on biofilms has some useful information.

Best wishes.
Lisa_Harrison

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Posts: 10
Reply with quote  #6 
Hi 

Thank you for your information I found that very useful as I also have felt for the last two years that I have had a urine infection without the stinging, cloudiness or smell. All of my tests have come back showing no infection even tests sent for cultures showed that I did not and never had an infection. i have been advised by my Urologist that there is no cure for IC but some of the procedures/medications can help to relieve the symptoms it is just a case of finding the right one for each person individually.

It is incredibly hard to live with and deal with on a daily basis but you must always try and keep up with the hope that you will find the right help for you.

Keep strong and good luck.

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Lisa
heathwhit

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Posts: 340
Reply with quote  #7 
If you don't have the stinging etc what are your symptons i would give my right arm not to have stinging and burning it all makes me so uptight especially after a wee.

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Lisa_Harrison

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Posts: 10
Reply with quote  #8 
I have a constant pain in lower abdomen and groin especially on the left side. It is worse just before and after a wee. Pain is so strong it often takes my breath away and I can be doubled up with the pain. I have a constant feeling that there is something stuck inside of me which is VERY uncomfortable. I also have a constant feeling that I need a wee even after I have emptied my bladder. 
This illness is so very debilitating and it affects so many people in such different ways, I totally understand how you feel with the burning as I had that after my first course of Ialuril but that does seem to have eased now thank god.


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Lisa
Lisa_Harrison

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Posts: 10
Reply with quote  #9 
Quote:
Originally Posted by heathwhit
If you don't have the stinging etc what are your symptons i would give my right arm not to have stinging and burning it all makes me so uptight especially after a wee.


Hi, since I last spoke to you about the stinging and i have gone further along the route with the Ialuril treatment it has accelerated the stinging/burning sensation which is unbearable at times. I have been using Uva-ursi & Echinacea oral drops for cystitis (available at most health food shops) add 15 drops to a glass of water 4/5 times a day. Too early to say how well it is working but I am forever hopeful.

Also I have just started seeing an acupuncturist to help with my bad back who also specialises in Chinese Herbal Medicine and he believes he can help with the IC by using a blend of herbs to treat the symptoms, I am not usually into alternative medicine but am willing to try ANYTHING that could help. Again it is early days yet but fingers crossed.

Good luck and never give up.

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Lisa
Blueangel

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Posts: 207
Reply with quote  #10 
Hi Lisa I had 2 IALURIL installations and after each one I got an infection
so I wasn't allowed to have them again.
I too suffer constant low stomach pain and have constant back pain
due to a disc pressing on a nerve, it's agony !
I have the stinging and burning after weeing too which is very painful
but I would cope with that any day if only the back pain and low stomach pain
could be cured ! Do you find different foods make your stomach pain worse ?
I do and I'm now struggling to find anything I can tolerate!
Would love to know what you can eat .
Lisa_Harrison

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Posts: 10
Reply with quote  #11 
Hi, 
I have not noticed any specific foods that irritate the IC but I tend not to eat any of the recommended avoidance foods i.e. spicy, tomatoes, coffee and alcohol so I keep to a fairly bland but healthy diet, due to the amount of painkillers and other medication I do not have much of an appetite anyway. I tend to only drink water and treat myself to the odd cup of tea.

I totally understand how you feel as the back pain is so very limiting and constantly painful as if the IC wasn't bad enough to try and cope with pain elsewhere is unbearable. I have noticed that everyone seem to suffer differently with the IC but our journey would appear to be quite similar.

Never give up as eventually help will be found to alleviate the pain or even to find a cure.

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Lisa
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