Urinary symptoms and Interstitial Cystitis.

[Synnove]

I have spent the last 4 weeks with on and off urinary symptoms such as urgency, dysuria, hematuria, bladder spasm, all such as one has with UTI, yet I have had 3 negative cultures.  ---I also have had similar situations over the last few years.  I usually use Aso or Pyridium for pain control. 
When this came on during the holidays, I first went to urgent care, just in case I needed antibiotics,-- urine culture negative. 
I then had same symptoms 2 more times with a week interval.

I at last called my urologist, who gave me appointment within 2 hours.

The urologist ordered a Ct scan of the kidneys, which I have had, and she has booked for a cystoscopy at the hospital's outpatient center.  She said that she suspect perhaps interstitial cystitis. I will have the cystoscopy Feb 2.

Does anyone here have Interstitial Cystitis?

Can anyone tell me how often this condition is associated with Sjogrens Syndrome?

I see my Rheumatologist first in March.  ---Should I send reports to her?  She treats my R/A and Sjogrens.
I had a flare up of my R/A first week of December, and had just finished a course of low dose Prednisone when the urinary symptoms started. 

Thanks for any response.  Wish all of you Happy New Year. 

[Carolina]

I have IC.  I take D-Mannose to stop my UTIs.

From the Sjogren's Syndrome Foundation:

About 25% of IC patients have a definite or probable diagnosis of Sjögren's, and as many as 14% of Sjögren's patients are estimated to have IC.

https://www.sjogrens.org/files/brochures/BPSeducationsheet.pdf

Hugs,  Elaine

[Nomad]

I have a mild case of IC.

I think / seem to do things a little diferently than some others here, but yet there are also some similarities.

First off, I no longer drink any soda.

I do drink lots of water. And, the water I drink most often is Mountain Valley Spring water that comes in a glass bottle. I just suspect this is the best quality or one of the best quality waters out there. I also drink Evian and some other bottles...I get them on sale and carry them with me due to dry mouth. But the majority of the time, I like the MV Spring Water...I think a super clean water the majority of the time is best for our Sj. syndrome and bladders.

If I have even the slightest twinge of a symptom...frequency, pain, burning, etc. I will start taking D-Mannose for several days. Usually three a day. I think I use the NOW Brand. I try to be very aware of my body. I also will start reducing my coffee intake and take a Prelief tablet five minutes before drinking coffee during this time period.

Sometimes, things are worse than a small symptom. If so, I will do the above, drink even less coffee and follow the IC Diet for awhile.

Anyway, knock on wood, this has worked out very well for me.

I keep Prelief tablets and D Mannose tablets with me at all times. I have a box of medical supplies in my car as I have a variety of weirdo ills that require odd medications. In that box, I have some Prelief and D Mannose. I also take these two things with me if I travel. I find nipping it in the bud extraordinarily valuable.

[Synnove]

Thank you both for the reply Elaine and Nomad.

Yes, I have learned of the dietary instructions, and will try to fallow as well as I can.  Many of the items in the forbidden list are what I like, especially caffe and chocolate.

I have not tried D-Mannose or Prelief.  The urologist has given me prescription for Pyridium, and I use Azo that helps.

Today I have terrible joint pain also, do not know what is worst.

[jazzlover]

I've had IC since 1992. It was  a BEAR for years. I got it under control during Lyme treatment...don't know exactly why I got better.

It bites me back every once in awhile now, but I was diagnosed with Mast Cell Activation Syndrome last year and I found out it is also associated with that.

So is Raynaud's!

So... consider that as a treatment that may help. I take cromolyn sodium and it really helped my IC pain. I have pain that feels like someone kicked me in the groin ... nearly gone now after months on the cromolyn.

[Carolina]

When I have bladder pain, mild exercise in a relatively warm water pool helps enormously.

A heating pad on my lower back (referred pain) is also helpful night.

Hugs,  Elaine

[Nomad]

I too love using the heating pad.

Some, if not all of my very bad pain associated with IC is pelvic floor stuff.  Thank goodness for heating pads.

I would seriously consider getting the D Mannose.

And if you know you are going to cheat a little on your diet (a little, because I don't think it would work if you ate or drank a lot of something super bad) then consider taking Prelief as well. These items are not prescription and have been of tremendous help to me and to many posting here.

[Carolina]

I never do any special diet (except  always eating too much, it seems.)

And I understand cranberry juice and cranberry pills aren't recommended for IC..  But that may be different now.

Recommendations keeps changing it seems!

Elaine

[jazzlover]

I won't TOUCH cranberry juice or anything acidic.

That is why I use D-Mannose.. it's the active ingredient in cranberry that does the job. No need for the acid of the cranberry.

[Nomad]

We are all soooo different.
When I'm in a big flare, foods will bother me.
Otherwise, there are times they don't bother me at all.
AND I have times they bother me a little.
This is why I try to be very aware of my body and what's going on.
It is time consuming and almost annoying.
I consider certain  products some sort of major blessing/gift from above and D Mannose and Prelief are on that list!