Help with bladder symptoms and treatments - Behçet's UK

Behçet's UK

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Help with bladder symptoms and treatments

Hi I have had Behcets for over 25 years but over the last have had a dreadful time with bladder pain, has anyone had problems like this and what meds seemed to help?

Thanks for any help as at a very low point.

14 Replies

Hi, has anything been done to find out the cause? I would be reluctant to give any advice about meds. It could be inflammation, infection or one of many other possibilities so I would suggest you get it checked out before self medicating other than pain relief.


So sorry to hear about your bladder pin. I have had issues with this and had investigations etc. - v important as Tigerfeet says. One self help method recommended to me in addition to medical treatment was to switch to decaf tea. i only have one ccoffee and one normal tea per day now. i think this has helped when pain has not been due to an infection (as checked by a dr)and isn't really any trouble. I find th waitrose decaf tea the best. I know decaf process is perhaps not that healthy and so also drink other drinks during the day.

Kind regards,


Definitely sounds like inflammation. Have you seen a Urologist?

I was very prone to Uti's... I'd get them 4-5x a year.I think a weak immune system and the fact that I was still eating sugar back then attributed to their cause because I haven't had one in over three years now. Initially, when I had a recurrent UTI for 3 plus months, a very stupid Dr diagnosed me with ICC. I had basically been on the same antibiotic and developed a resistance to it.... the symptoms would go, but infection would come back after a few days... so in between I would test negative for bacteria- hence "just inflammation." (I literally finished a course at midnight, and he had tested me at 6am the next day....OF COURSE THERE WAS NO BACTERIA YET)

Sought a 2nd opinion- gave me Cipro for 2 weeks and boom. Healed. He also prescribed me a low dose prophylatic antibiotic (macrodantin 50mg) to take after intercourse... but I honestly feel it mostly helps with the paranoia of getting a UTI, rather than the actual mechanics of getting one because like i said- I cut all sugar and am healthy now.

Hope this helps!

in reply to rooser1

Thanks for all replies, I have had investigations (many!!) and now I think my rheumatologist has run out of ideas :(. Will try less sugar as have no caffeine/alcohol any more.

rooser1 profile image
rooser1 in reply to

What do they think of putting you on macrodantin at night? It can help tremendously with inflammation. If not an antibiotic, what about phenazopyridine?

What kind of pain?

in reply to rooser1

Thank you for the information I haven't tried either, but antibiotics have not worked.

The pain is a sharp biting unbearable glass like sensation that starts from 11am and I try to manage with paracetamol and low dose steroids.

rooser1 profile image
rooser1 in reply to

how long has this intense glass pain been going for? If you test negative for bacteria in your urine- definitely consider bringing up ICC to your dr.

in reply to rooser1

Hi its been going on for about 4 months, my Dr is sending me for further tests to see if there is infection or if it is just inflammation. Thanks for advice.

Does anyone have Turmeric as a drink and finds it helpful?

Chinaboyce profile image
Chinaboyce in reply to

Not yet but I've heard loads about the positive benefits of turmeric lately so thinking of starting to give it a try. Will let you know how I get on!

Chipping in on the tea suggestions - I drink Red Bush, recommended by Dietician.

Have you heard of IC , InterInterstitial Cystitis ? You can find out more at the web site Interstitial Cystitis Association.

I have Bechets as well as ic, my urologist did a procedure called hydrodistenison which helped for several years. I am due to go back and will see what other options I my have since having the procedure requires anesthesia.

Hope this helps

Also look into a urologist.

Try an elimination diet. I find when I cheat & eat foods I know I'm sensitive to, it goes straight to my plumbing. Helps keep me on the right diet, that's for sure.

You could also try d-mannose. I give lots of it to my cat whenever she gets a bladder infection, & I try to get it down her daily in between them as a prophylactic. It's sweet, but unfortunately cats don't like sweet. It always works though, when I can catch her & make her take it. She's more weasel than cat, & she always sees me coming.

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