I've been newly diagnosed with follicular cystitis

[fee]

My symptoms often mirror those of IC sufferers but I also often have repeated infections. My worst symptoms are haematuria ,frequency of urination and pain. I'd like to talk with others about what they've found successful so that I can tryand also that I can share this with someone.

[ICNDonna]

I'm not familiar with this one. Hopefully someone will read your post who will have some answers for you. How were you diagnosed?

Donna

[fee]

after several biopsies. I had cervical cancer a few years ago and my consultant says the two are related in the sense that my bladder has been compromised by surgery. The symptoms are very similar to those of IC and he says there is crossover in the treatments. Anyone else had this diagnosis?

[Sarojini]

I've never heard of this diagnosis either, but perhaps someone else has.

[traceann]

Welcome to the gang! Gosh, I am stumped too, as the others said, hopefully someone will be able to chime in with some info! You say that there is treatment cross-over, did they put you on anything to treat it? Keep us posted please! If there is cross-over treatments, I am sure there will be a lot of info on the site here that can help you too, has diet played a role in helping to control symptoms???

Hugs!!!! :)

[Katrina]

:welcome: to the ICN!!
I don't know that diagnosis but since your symptoms mirror IC I have given you links to IC help since a lot of it treats symptoms. You would definatly not be alone here getting repeated infections. Is there more you can tell us about your diagnosis? I would like to learn more.

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp Treatments rated by patients.

I hope you get answers and feel better. I am subscibing to this thread so that I can learn more. :grouphug:
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[fee]

Sorry for the time delay I was away working. Over the last three years I have had a series of infections . They were treated with antibiotics Ciprofloxin was very successful- but they don't like to give it very often I had a six/nine month spell on trimethoprin which steadied the infections but the other symptoms of frequency and haematuria got worse. I have had two sets of biopsies and the last diagnosed follicular cystitis which is a tumour like response to repeated infections but non malignant. They ruled out IC as there are no Hunner's ulcers present but my consultant said the symptoms and therefore treatments will be similar to IC in many respects as they all irritate the bladder. The worst symptom is frequency and I wake up every one to two hours a night to go to the toilet. I am being treated with detruisol ( I'm in the UK so names may be different) but it's supposed to help with an overactive bladder. I found that it made it worse but I'm worried that I didn't give it long enough. Anything that would help with frequency would make my life immeasurably better. I have cut out tea, coffee, spicy foods, chocolate . Any tips on calming the frequency down and letting me get a nigts sleep would be fantastic.

[Katrina]

The newbie kit and the pain relief kit in my other posts have a lot of tips. My experience has been if one antispasmodic doesn't help trying another is a good idea...since sometimes it is just a matter of finding the one that best suits you. Has cutting those foods helped? If so there are a lot of things at the pain relief link that help minimize acidicy of the urine too...If over acitive bladder is part of the cause of your symptoms relaxing those musscles and strengthening them may help. Besides antispasmodics musscle relaxants and physical therapy may help. Also althernating heat and cold and moisture help to relax musscles.

I am very sorry about your diagnosis and the contition you are in.
http://www.ichelp.com/TreatmentAndSelfHelp/medsguide.html ICA treatments and Meds
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp These two links are lists of treatments for IC. Hopefully they can help you learn what you may need

I so hope you get help. I will try to look into your diagnosis and learn more about it. :grouphug:

[Katrina]

Well I did some research....and boy do I understand why you are here because it was hard to learn things about this. I hope you can have some kind of longterm antibiotic treatment. Does the trimethoprin help? How much blood do you loose in your urine?

You said you last biopsy said follicular cystitis but what did the first one say???

Was your bladder capacity tested? Have you been tested to rate an amount of retention?

I feel the need to point out that lack of hunners ulcers doesn't mean no IC to us.