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Blueangel

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Posts: 198
Reply with quote  #1 
Does anyone know if there is a good IC knowledgeable
urologist in the Leicester area or nearby ? I have an appointment
with my urologist tomorrow and have been told he can't help me .

Anyone know what questions I need to ask about treatments or being referred to
a different urologist ?

Thanks
Moderatorsusan

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Reply with quote  #2 
Unfortunately the BHUK office is now closed until early January but I know the ladies in the office have knowledge about a number of specialists including those in the Leicester area.

Problem is that urologists follow an IC checklist and if you don’t respond to any of the treatments or fit the diagnosis in terms of symptoms, it ends up with they can’t help you any further. However there are some good specialists out there and I’m sure the BHUK office can give you more information if you call them early January when the office reopens.
Blueangel

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Posts: 198
Reply with quote  #3 
I do fit the diagnosis and have been diagnosed with IC .
Unfortunately I can't tolerate the medications I've tried.
My urologist doesn't test for infections and only offers one type of installation
which has given me 2 infections in the past so not allowed anymore.

Just wish I could find a urologist that actually listened instead
of rushing me out the door !!

It's a shame that the forum doesn't have a list of good urologists that
other members would recommend.
Moderatorsusan

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Reply with quote  #4 
Sadly forum rules prevent the naming of specialists but I’m sure those who read this thread can contact you privately with details of those who are treating them.

Do call the BHUK office in the new year for more details.
Blueangel

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Posts: 198
Reply with quote  #5 
Thanks Susan.

If anyone knows of a good urologist in the Leicester area could
you send me a message please.

Thanks



ModeratorKate

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Reply with quote  #6 

Morning Blueangel

As Susan mentioned Please do contact the Office, 

I am sure and just to re confirm to others looking in, this another  reason, it is helpful to become a Member of BHUK, as they have all sorts of useful information, that we cannot post here on the Forum.
http://bladderhealthuk.org/information--support/resources

Of course you are all Welcome to e. mail each other with any suggestions etc.

Kind regards
Kate


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Blueangel

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Posts: 198
Reply with quote  #7 
Hi Kate . I asked to try parson's instillations
and my consultant has agreed ! I did try one a long time ago and I
could hold more urine and it did ease the pain but at the time it was only done
for diagnosis. Hopefully I will get quite a few of them and hopefully some relief.

ModeratorKate

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Posts: 1,776
Reply with quote  #8 
Hello Blueangel
Well done you for asking, I do hope you will get relief, do keep us posted.

and for those wondering, here is what our website says.

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

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Annabel1979

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Posts: 44
Reply with quote  #9 
Hi... I had four months of dreadful bladder pain. Spent thousands of pounds on private tests as NHS were too slow and didnt listen. Was told by numerous doctors different predicted diagnosis.. from bladder endometrosis, to urethral syndrome and of course IC. Was due to do a laporascopy but was a bit scared as read it can make things worse. Then I discovered online after alot of researching... 'high tone' pelvic floor dysfunction. After a month of physio, stress reduction (where i can) and some muscle relaxants i am finally on the mend. My tight muscles were basically squashing my bladder and causing cystitis pain and cramping. I urge anyone with bladder pain to go and be checked out by a womans physio. They can check your pelvic floor muscle with an internal examination or some use an ultra sound (with the sensor placed on vagina not stomach). I was told IC is very rare and many people who have been diagnosed it do in fact have PFD. Especially in the absence of cysts/bladder abrasions (and of ourse bactsria) many have many unecessary and painful procedures as conventional doctors dont understand how the muscle can cause this pain. Kind of like how if you pull a muscle in your neck you get a headache. If anyone is in London i go to an amazing ** Clinic. They are so kind and patient and a 90 minute consultation cost me 90 pounds. Anyway just my thoughts if i can help anyone avoid the hell ive been through. Stay strong ladies x


** Edited by Moderator. A reminder that it is fine to e.mail or P.M each other for more information.Also you could advise the BHUK office who may add suggestions to their  list of contacts.Thank you.

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