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Anyone With Interstitial Cystitis


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6 replies to this topic

#1 Bunky

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Posted 28 April 2007 - 06:52 PM

Hello all,
I'm gathering info in preparation for my visit with the Rheumatology Clinic at Stanford. I was diagnosed with Interstitial Cystitis 10 years ago, and have had numerous bladder surgeries, including stretching for shrunken, hardened bladder. Have any other sclero patients had similar diagnosis and hardening of the bladder? It sure would be interesting to know if there is a connection between the two. Of course, if there is, it takes forever for the medical community to come up with what seems obvious to the patients! :)

#2 Shelley Ensz

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Posted 29 April 2007 - 05:01 PM

Hi Bunky,

I also have interstitial cystitis for over 30 years, underdiagnosed and misdiagnosed for the first few decades. But, I have Multiple Autoimmune Syndrome (MAS) and not "only" scleroderma.

I tried many meds and diets that were of very little help. I've had bladder distention surgery with biopsy and fulgeration of widespread petechial hemorrhages and a Hunner's ulcer. That put me out of my misery for about a year. Then I began DMSO instillations, which have been terrific for me, although after my recent cystoscopy, they say I need to have another distention surgery since the widespread inflammation and shrinkage has set in again.

We have a page on our main site about Interstitial Cystitis and its relation to other autoimmune diseases, too, along with a patient story collection that you may find interesting.

Beware that many doctors and even rheumatologists may have no idea what
Interstitial Cystitis is, and may think that it is simply "regular" cystitis...even otherwise very astute doctors may know very little of rare bladder diseases, which is often what prevents or delays diagnosis of this exceedingly painful inflammatory bladder disease for many years.


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 sclero.org.

#3 VEGAN

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Posted 27 July 2007 - 05:06 AM

Overnight I started having a constant urge to urinate, and have been on the toilet literally about 60 times a day for the past week.

Went to the gyno yesterday, blood in urine, waiting 3 days to see if infection, but she doesn't think it is infection. I asked her about the possible connection between this problem and sclero, and she blew me off.

So when I got home I researched my symptoms online and found interstitial cystitis (painful bladder syndrome) which the gyno did not tell me about even though it seems like a really good possibility.

So I searched this forum and voila, it's starting to make sense.

I'm trying hard to put myself on a toilet schedule because this is really interfering with my life.

I have just about lost all faith in doctors.

Satya

#4 jefa

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Posted 27 July 2007 - 06:21 AM

Hi, Satya. Sorry to hear about your new problem. I think I would be more inclined to take this problem to my primary care physician than a gyno. Are you having an increased volume of urine or just a constant urge? I assumed you have checked out the link in Shelley's above post. Here is a Medline Plus article on Frequent or Urgent Urination. It covers quite a few possible causes including interstitial cystitis.

I was recently treated with a course of broad spectrum antibiotics for a possible UTI, but the symptoms (increased frequency, but not so much urgency) have not yet gone away. My primary care physician is on holiday, but I will be seeing him again in a couple of weeks. My rheumatologist has been doing regular urinalysis to watch for possible kidney problems related to scleroderma. Keep us posted on your progress.
Warm wishes,
Jefa

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#5 Margaret

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Posted 27 July 2007 - 06:45 AM

Hi Everyone~~~

Bunky....thanks for bringing this up as I had never heard of sclero causing bladder issues. Gareth is going in Monday to a Urologist because his ultrasound (for gallbladder disease) showed mild hydronephrosis....fluid in the kidneys. The gastro doctor won't do a CT scan with contrast until the nephrologist tells him the kidneys are OK. I have to have him checked to see why urine is being blocked in the kidneys. I found it strange that he has to seen by a urologist BEFORE he can be seen by a nephrologist. He's Anti-RNA Polymerase 111 positve so we have to watch the kidney functions. Now I will know what questions to ask.

Take care, Everyone.
Margaret

#6 Shelley Ensz

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Posted 27 July 2007 - 09:22 AM

Hi Satya,

Oh, I feel for you! While you are waiting out the test results (hopefully it is "just" an infection since that is so much more treatable), one thing that may help a little bit is to avoid all liquids except water. Things like coffee, pop, fruit juices can send my I.C. into severe overdrive.

I think you should consider seeing a urologist. But fair warning, call around and ask a lot of questions first to find the right one for you, since most of them specialize primarily in male problems and don't give much heed to females; and things like I.C. predominantly affect women (like by 90%).
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 sclero.org.

#7 WestCoast1

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Posted 27 July 2007 - 10:31 AM

Hi Satya,
I just wanted to add that a particular muscle relaxer that I used to take caused me to have frequent urination all night....I also had to take the med at night because it made me very sleepy. This went on until I was able to stop the medication and soon after realized that the problem was gone. I still take the medication once in a while and the same thing happens, but it was a relief to know that it was a side effect of the medication and not a serious medical condition.

Your situation sounds a little different, and therefore you are smart to seek a doctors oppinion. This is just my own personal experience.
*WestCoast*

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