Bladder

[cloverboots]

Hi I have recently been diagnosed with Sjorgens , I have suffered bladder problems such as pain and frequency of urine for over 15 years .Does anyone else have these symptoms .Thanks Cathy

[peachtreepiggy]

You might want to look into the condition Interstititial cystitis, or painful bladder syndrome. I started with it after a bout with covid this past fall and a raging UTI, which I haven't had for 30 years!

[cloverboots in reply to peachtreepiggy]

Thanks , I have had painful bladder syndrome for over 30 years , and I am beginning to think sjorgens makes this condition worse .What is depressing is the fact most health professionals know nothing about it .Try and get yourself referred to a bladder clinic they are really good with pbs better than the Consultants .

[peachtreepiggy in reply to cloverboots]

Yeah, I am in the States, and have already seen a nurse practitioner in urology, a urogynecologist and a urologist . The one I saw this week mentioned Sjogren's, which apparently sometimes goes hand in hand with IC. I don't think they have "bladder clinics" here.

[peachtreepiggy]

Check out the Internet; there is a whole support group just devoted to interstitial cystitis, and there are lots of ideas for treatment and pain relief, which we surely need with this condition!

[cloverboots]

Hi I live in Wales in the UK , I think your nurse practioner is our bladder clinic specialist nurse .Unfortunatly the medications they give for irratable bladder cause a very dry mouth to begin with and if you have sjorgens it is almost impossible to take , so be careful if you are prescribed medication .Irrable bladder is a difficult condition to treat but I have found some short term relief when it is very bad by using a TENs machine , either side of the spine ( but not on it ) just above the buttocks .It blocks the overactive nerves which overstimulate the bladder .Brufen also works really well for me even if the stomach does not like it .There are so many women suffering for many years with this but the doctors are generally hopeless Maybe they are better in the States I hope so .

[LindyK in reply to cloverboots]

Doctors are not better in the states treating interstitial cystitis. In fact they suck. I have suffered with interstitial cystitis for decades. I think IC is connected to Sjogren’s. I am finding methylene blue, red light/near infrared therapy, and also low dose naltrexone (LDN) help. I found these answers myself. Definitely look into low dose naltrexone!

[SusieW2]

Just a thought but going gluten free for a month or so just to see if it makes a difference.

[cloverboots in reply to SusieW2]

Thanks has it helped you .

[SusieW2 in reply to cloverboots]

Yes, digestion wise and especially for my eczema which is partially caused by too much high acid foods. We're all some what different so we all need to discover how our bodies respond.

[cloverboots in reply to SusieW2]

Thanks will give it a go , will try anything !!!!fed up with the pain all the time

[SusieW2 in reply to cloverboots]

Good luck. I think it helps me to be as active as I can even though I'm tired a lot.