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The Australian Sjögren's Syndrome Association
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Interstitial cystitis

I have been experiencing pain and discomfort with urination for several weeks now. Frequency too. I've had a couple of positive Ecoli cultures, but also a couple of non-infected samples. But all of the samples have had blood. GP is now saying I'll be referred to urology if I return one more non-infected sample (submitted yesterday).

I've had chronic haematuria (blood in urine) for years. This has been investigated previously and I had bladder polyps cauterised. I was told no further action was required unless I saw visible blood - which has never been the case.

But I'm wondering about interstitial cystitis, as this can happen with Sjogrens. Does anyone have experience of this and, if so, what have you found helps, particularly in terms of home remedies as opposed to drugs/surgery.


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I also have Sjogren's and chronic haematuria that no one can seem to relate to a particular cause, but haven't so far experienced any pain or discomfort while urinating. I felt compelled to respond, however, because I recently lost a good friend to ovarian cancer and very similar urination problems were her very first symptoms. Do you know if your doctor ruled that out? Sorry I can't be of any help to you re your question about interstitial cystitis, and I hope you can get to the bottom of this quickly.


Thank you.  Urogram CT and cystoscopy found nothing 'sinister'.  But still have symptoms.  Work in progress.....


Tarlov Cysts can cause bladder infections pain etc. ask for MRI of the sacrum and do  your own research. Often associated with Sjogrens, good luck.

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Also I had success with using a mild antiseptic cream suitable for down there (instead of KY jelly) on my partner before sex.  I'd had Interstitual Cystitus for 30 years, not any more. But I had no blood in my urine.

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The antiseptic cream sounds worth trying.  Do you have brand names?

I've now been prescribed vaginal oestrogen pessaries to plump everything up internally :-) !  And if that doesn't help much, or at all, I can have low-dose antibiotics for after sex.

I am also using D-Mannose Waterfall tablets for a few days either side of sex.  They're plant-based sugars that bind to EColi and eliminate it.


I am also seeing a haematologist tomorrow (junior bloody doctors permitting!) to discuss the haematuria, along with fluctuating iron and ferritin levels.

Has occurred to me I might also have peptic/oesophageal ulcers and I have read that these can cause haematuria.

Work in progress....!!


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