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Follicular Cystitis

I had a bladder biopsy approx 1 year ago which stated "sections show bladder mucosa lined by normal urothelium.  the corium shows vascular congestions and is expanded by an infiltrate of chronic inflammatory cells including lymphocytes, plasma cells and mast cells.  Prominent within corium are lymphoid follicles including germinal centres.  No evidence of atypia or malignancy , no granalomatous inflammation is seen  - summary follicular cystitis.

I had had about 1 year prior what I thought was a bladder infection.  I was treated with 2 days antibiotics on 5 different occasions and this only exacerbated the condition.  I actualy think it may have been thrush as I now know this can cause burning.   I asked then if any of my urine samples had come back positive for infection and was told no - I asked why I had been given antibiotics and was told "just in case".  From that point on I suffered severe digestive problems, skin rash and frequent urination, sometimes it would settle and then flare again.  So eventually I was sent to a urologist and the bladder biospy was performed. He stated my bladder looked like it had had multiple infections and suggested that I go on antibiotics for three months. I was a little scared of doing this as I had had such a bad reaction to antibiotics before. He was puzzled taht there had never been an infection cultured.  But still thought antibiotics might help but then might not.  I did not take the risk and so sought other means.  Alternative/conservative.  
Prior to this health issue I had been a woman of  above average fitness, taught stretch classes, did yoga and gym work twice a week.  My health was excellent.  
It is now some time down the track - the systemic problems continue, rash, sores, inflammation - steriods helped enormously but I could not continue after three  months. I know my bladder is the key - the inflammation has moved around my body slowly - but "attacks" always involve a swollen bladder.  Nobody can tell me anything about Follicular cystitis - should I take antibiotics?  My urologist is baffled and I must say has done no research into this condition at all.  He does not believe in conditions such as IC etc in his words "too many women on the net".  Definitely certain foods will upset my bladder causing it to swell and become extremely tender - if it fills it becomes painful and makes bending impossible. I do not think I have IC - but I cannot find anyone to ask about this FC and how I should approach treating.  I feel the longer it is left the worse and more widespread  my symptoms become. I have also gone on one antibiotic for two weeks which just made the skin rash and itching worse - could augmentin be a better choice or is follicular not bacterial?
Apologies if this is muddled - any advice you can give me would be most appreciated

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Follicular cystitis (cystitis follicularis) is a non-cancerous response to chronic bacterial infection.  Treatment options for this is limited and may overlap with those for interstitial cystitis.

You may want to consider a potassium sensitivity test (PST) which is a tool for detecting bladder sensitivity.  For more details in this test, this site can explain it:

Pentosan polysulfate sodium and dimethyl sulfoxide are approved for the treatment of chronic cystitis and may be of benefit in your case.  You may want to discuss if these medications can be applied to you.  

Regarding the systemic symptoms, if the urological workup is not revealing, you may want to consider a rheumatological workup, including TSH, ESR, ANA and rheumatoid factor levels.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
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