Interstitial Cystitis

5 posts in this topic

Hi all .. bit of an update on my search for an answer .. my ANA, ESR and CRP negative again, but sclero rheumatologist doing other bloods as well as lung function test and barium swallow.


I feel pretty lousy though now which I hadn't been feeling before .. I have chronic sneezing not relieved by anti-allergy tablets and also, cystitis type bladder. I have blood in urine so doctor is checking further but I'm thinking interstitial cystitis as it's not the first time it's happened and I haven't had an infection.


Does anyone have any advice on this and how prevalent it is.


Thanks so much for your help.



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Hello Smanda


I am sorry you're feeling so rough at the moment, I know it can get you down when, day after day, you feel ill for one reason or another. Having said that there are the good days and they're all the more good for being rare!


I have interstitial cystitis and was diagnosed with it, after 19 years, 2 years before the scleroderma was diagnosed. However I now know that the scleroderma was quietly developing at that time.


I had bladder instillations by catheter of Cystistat for a number of months, first weekly, then 2 weekly, then monthly etc until the lining of the bladder was restored. Thankfully two of the medications I take for sclero are also used for IC which I why, I assume, I have not had a problem with it for about two years.


We have a page on interstitial cystitis (IC) you may find helpful. You have my sympathy as it is a very unpleasant condition to have let alone having it with another disease.


Please keep us informed and no doubt others will comment as I know we're not the only ones with IC here.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Smanda,


I am sorry to hear you are having cystitis symptoms. You will need to go to a good urologist, one who specializes in interstitial cystitis, to get properly diagnosed and treated. That's often difficult because most urologists specialize in male issues, and I.C. predominantly affects women.


Even though I went to a great urologist, I was still misdiagnosed (and thus mistreated) for over two decades, as they treated only the severe urethritis which accompanied my I.C.. I finally found both diagnosis and relief through bladder distention and fulgeration surgery, for about a year. Then DMSO instillations finally quelled things. I had actually gotten used to over 20 trips to the bathroom, day and night. It felt odd to be without incredibly painful bladder spasms every day. And to make a road trip without visiting every restroom along the path is very delightful!


After I was finally diagnosed, I requested my hospital records from several decades prior, when I had bladder surgery. They had clearly diagnosed severe urethritis and interstitial cystitis at that time; but that last information somehow escaped both me and my urologist.


By looking at bladder size (I.C. causes the bladder to shrink), Hunner's ulcer (which my urologist thought was cancer at first), and petecchial hemorhages, during cytoscopy, they can diagnose interstitial cystitis. Having bladder infection symptoms without having bladder infection is one of the hallmarks of I.C. The problem is, many doctors treat for symptoms of bladder infection without actually testing to verify that there is an infection.


Whenever things act up, I just have more DMSO instillations. They are very cheap, convenient, and easy. They have newer medications out today but I refuse to have them since I know the DMSO works so well for me.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is

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Hi Samanda,


I too have interstitial cystitis (IC). I have been diagnosed for about three years now. It took the several doctors and finally my urologist found the interstitial cystitis. We thought it was my ovaries causing the pain, because I would get cyst. We removed my ovaries and I still had pain. Six months later I had a mass where my ovaries were and they I had to have surgery to remove the mass. They thought they cured me again, but I still had pain. Finally they sent me to a urologist and he did a hydrodistention on my bladder. They fill your bladder up and look in there. My bladder size was 500cc , and normal is 1000cc. There was a lot of bleeding and I was diagnosed with severe interstitial cystitis. For a year I went through tons of medications, bladder installs with Heparin and DMSO. I did better with the Heparin but the DMSO made my bladder worse.


My bladder has gotten much better. I finally found a medication that makes my bladder much better. It took a year of trying many different things. When I get stressed my bladder does start hurting again. Certain foods will trigger a reaction in the bladder. I do get infection easy too.


There is a great IC website. It is called the IC network. It helped with lots of the questions about IC.


Hope this helps.





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Hello, I have Limited/crest scleroderma, my Rheumatologist asked the nurse at the hospital to call me last week. Apparently, my urine test showed an infection, I'm not to sure what type. I told her that I wasn't having any symptoms, and felt fine.


Should I be concerned about this?


Many thanks


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