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.

[Hidden]

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.

[sian35]

Hi

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,

Sian

[rooser1]

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!

[Hidden 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 in reply to Hidden]

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?

[Hidden 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 in reply to Hidden]

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.

[Hidden 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.

[Hidden]

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

[Chinaboyce in reply to Hidden]

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!

[Hidden]

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

[Zoie]

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

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

[rooser1]

Also look into a urologist.

[julietoo]

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.