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mlking71

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Posts: 22
Reply with quote  #1 
I am 71 and have just been told I have IC.  Am very shocked and confused.  Started with an infection. Pain continued, clear specimen.  Saw Urologist privately and had a cystoscopy which showed narrowed urethra so had a urethral dilation and biopsy which came back high mast cells.  Changed to NHS and am on list for Cystistat 4 months time.  I am on Ranitidine which just makes me sick and worries me as it decreases acid which stomachs need apparently.  The pain of keep wanted to pass water comes and goes with no apparent reason.  Am trying to follow the elimination diet but it is difficult. I live in Essex.  Are there any members here?  
Jude10

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Posts: 50
Reply with quote  #2 
Hello, I thought I would just reply to your post as your story is so familiar. It seems many of us are diagnosed or could be diagnosed IC following an infection. I saw a specialist who diagnosed a persistent uti following a broth test and I am much better on long term antibiotics at a high dose. I found the chronicuti website helpful and also the research on unreliable nhs urine testing. I have just read an interesting research article about persistent infection and how ecoli develop a slime around them which enables them to persist avoiding antibiotics and our immune system. Weigh up the diagnostic possibilities there is more than 1 choice!
mlking71

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Posts: 22
Reply with quote  #3 
Thank you Jude10. It makes sense to me that this is deep seated infections. It seems quite difficult to get to see one of the few specialists who do the efficient cultures though.
heathwhit

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Posts: 340
Reply with quote  #4 
Hi, Jude 10 how are your long term ABs working, have you noticed any difference on your symptons.



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H.M Whitworth
Jude10

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Posts: 50
Reply with quote  #5 
Hello Heather,

Yes, am doing ok, my symptoms are much reduced but it is very slow! Some days I have no symptoms now, my symptoms seem to set off with exercise and I couldn,t walk far at all. Now I can do a mile comfortably but not 2 miles yet! It,s up and down but overall improving.
How about you? Did you get instills sorted?
heathwhit

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Posts: 340
Reply with quote  #6 
Hello Jude, no not yet got a letter from Mr A saying he will let me know.Myhubby has been having a course of radiotherapy for postate so se agreed to wait until that trauma was cpmpleted which it now is, so i will ring his secretary next week.What ABs are you taking,
.i wish i had the courage to stick to some i s. So sensative to meds.In the meantime i carry on with all the horrible symptons.So glad you are feeling better.best wishes Heathet.

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H.M Whitworth
Jude10

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Posts: 50
Reply with quote  #7 
Thanks Heather, I take coamoxacillin I haven,t had any side effects unlike cipro and to some extent cefelexin. I also take Chinese herbs though so they might help too.
I,m sorry you are back to all the symptoms but at least you know the cause now and maybe the instills will help, I’m sorry to hear your hubby has been through the mill too!
Mazoli_IC

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Posts: 31
Reply with quote  #8 
I remember going from doctor to doctor and no one knowing what I had.  Finally, I got the IC diagnosis.  I was happy to have a name to what I had, but shortly after reading about it, I realized that life would never be the same.  The diagnosis happened in 1995 (January).  

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