Bladder and urethral pain - help please

[UKlady1001]

I am at the end of my rope with so much bladder pain.
So far I have been diagnosed with several prolapses, intussusception of my bowel and finally told after a cystocopy that I have Folicular Cystitis but the 3 months of Cipro are nearly over and I feel worse than I did before.
They find some blood and white blood cells together with protien in my urine but tell me I have not infection.  The walls of my bladder are a brown stain colour which I am told is follicular cystitis but no one seems to know anything about this and the cipro isnt working to get rid of it.

I was diagnosed by my Urogynecologist and am now wondering if I need to see a really good Urologist.  My GP has agreed to send me to one but doesnt know any so she has told me to go and find one.
Can anyone help me with names of a good Urologist?  I live in Milton Keynes but will travel.

Is follicular cystitis the same as Trigonitis?
I bled for 3 days solid after my cystocopy.  Is this normal?  I am in so much pain but get no help from my GP who tells me to go back to my Urogynecologist but I feel I am not getting anywhere.  I have been solidly suffering now with ups and downs for the last 2 years and have had bladder pain and infections all my life.

Drinking fizzy drinks, OJ, wine etc makes it worse and now I eat bland food so as not to upset it.  I drink lots of water.  My multi vits make the pain worse and so did taking HRT due I think to making my antroverted uterus getting a bit bigger.  Anything pressing on my bladder internally makes the pain worse, from the bowel as well.  No matter what I do it is getting worse.  I cant cope with it any more.  A and E were useless.

I have 2 children to look after on my own and have no help.  I am at the end of my rope with it all and very much want to find out, what exactly is wrong and how to deal with it.

Please if you can help at all with any of the above and very much appreciate it.
Thank you

[UKlady1001]

The flexible cystoscopy confirmed Follicular Cystitis.  It looked like brown patches on my bladder with darken vessels that I could see.  I also have Sjogrens Syndrome and a history of painful bladder and infections and the IC diet has slightly reduced the pain.  So could I have both IC and the confirmed FC?  It looks like I will be continuing to be treated by my Urogynecologist from a letter i have just received.  
Thank you for your help.

[Sanjivani Wanjari, MD]

Hi,
You need to consult an urologist at the earliest so that a diagnosis can be made. Follicular cystitis is non-specific inflammatory disease of the bladder and trigonitis is a condition of inflammation of the trigone region of the bladder. It is more common in women. Another entity is interstitial cystitis or bladder pain syndrome is a chronic inflammatory condition of the bladder. However, IC has not been shown to be caused by a bacterial infection and antibiotics are an ineffective treatment.
The answer is based on information provided. Exact advice is not possible without a proper examination and investigations. You are requested to consult your Doctor. Take care and keep us posted.