Interstitial Cystitis

[Sequoia]

If you have urinary pain, burning &/or frequency, and you've been tested for a UTI with negative results, you may have Interstitial Cystitis.

IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. (MedLinePlus)

The cause of IC is unknown, and there's no cure, although it can be managed with medications and complementary/alternative methods. Diagnosis is by exclusion (sound familiar?). IC may (or may not) be an autoimmune condition.

Here are a few good resources for information on IC:

http://www.nlm.nih.gov/medlineplus/e...cle/000477.htm

http://www.mayoclinic.com/health/int...stitis/DS00497

http://www.ichelp.org/Page.aspx?pid=329

Note: while cranberry juice (or capsules) is helpful with a UTI, it will make Interstitial Cystitis worse!

I just thought I'd share all this because I'm in the middle of yet another bout of IC myself.

[polopuppy]

I have something going on and I am starting to get suspicious that it could be IC. I was kind of surprised to see this posted today. I have an appointment with a specialist tomorrow and I hope she can help figure out what the problem is. I would love some relief. I am in misery.

I know there are many things it could be but I know it is not an infection because I had a urinalysis that was clean. The symptoms are not any better 12 days later.

I tried Detrol but I am not tolerating it neurologically for some reason. It makes my headaches unbearable, increases my vertigo and my arms and legs become completely uncoordinated. I feel very tired and listless on it. It does help the leakage but not the other symptoms.

I tried Azo tablets, magnesium and cranberry juice but to no avail. I don't think I can take this anymore. I feel like I am going nuts. It controls my thoughts while I am awake and it wakes me up at night too. I feel like I have to go constantly even it I have just gone. Sometimes I go pee and there are like three drops of pee there. The pressure on my bladder is incredible and then when I pee, I get severe bladder pain/spasms that last for 10-15 minutes. Does any of this sound familiar?

Thanks for your post and the informative links.

[Sequoia]

Yes, your symptoms sound all too familiar to me.

Hopefully the specialist will be able to get a handle on what's going on. If it is IC, there are definitely things you can do to ease the symptoms.

Hang in there, dear. I know the symptoms are driving you crazy, but you will get better.

[Seasha]

So sorry you are going thru this, Sequoia. Years before I was diagnosed w/ MS, I had a similar situation. Pain, frequency and burning and results of UTI testing were negative.

Dx was IC. It lasted months and I had to go thru some procedures w/ a urologist. Can't remember what it was called, but I smelled like garlic for about 24 hrs. later, which was weird!

Anyway, it went away and was never to return - ever! And the urologist said I'd have it for the rest of my life! Now I'm thinking that is was a MS flare and not IC!

I found that drinking a blend of herbal teas helped. It contained uva ursi, marshmallow root, corn silk, lemongrass, licorice, and pipsissewa (?). I also found relief by drinking aloe vera juice... very soothing. That and eliminating certain foods, but can't remember.

I also did accupuncture on a regular basis. Hope this helps and take care.

[polopuppy]

Thanks for you kind words, Sequoia.

I suppose that I should be patient and wait for my appointment tomorrow before I assume anything. It sounds like IC is not an easy diagnosis to make and that there are many other things that can cause the same symptoms.

I hope that whatever it is has an easy solution or at least an treatment that can bring some symptom relief.

Did it take you a long time to be diagnosed? Is there any relationship with MS or is it not related at all? I couldn't get a feel for the cause by reading the links. It seems rather misunderstood like so many other diseases.

I am sorry that you have this issue and that you are suffering with it right now. It is no fun.

I will let you know what the physician says when I get back.

[Sequoia]

Thank you, Seasha.

I'm an old hand at this, having had IC for over two decades. I have an episode at about 2 year intervals, always linked to unusual stress. Once I've been tested for a UTI, I put my "program" into effect: increased meditation, eliminating all my food triggers, and drinking aloe vera juice. I can calm things down within a few days, and be all the way back to normal in a month or so.

I used to do acupuncture for IC and for MS symptoms, but had to stop because the insertion of the needles began to trigger extremely painful muscle spasms.

Thank you too, polopuppy.

It took a good 10 years before I finally got a diagnosis. I didn't know nearly as much about how to research things and how to "work" the medical system back then. I just went home when my PCP said it wasn't a UTI and suffered until it ran its course.

I haven't come across anything that indicates a relationship with MS, other than that if you have one autoimmune disease your chances of having another one (or more) go up.

Please do let me know how your appointment goes; I'll be keeping my fingers crossed for a speedy diagnosis for you!

[barelracer]

ic

IC and prolapse were a couple of the things that made my pcp think AI, then MS....it stinks to deal with!
definately see that during a "bad day" the IC pain/frequency is worse! I was surprised to see this post, but glad to read others accounts of this problem....

IC Rescue treatments, elmiron, enablex, and others never worked, so if any of you know of a way to relieve any sx, let me know! havent slept well in over a year because of the frequency!

[Sequoia]

IC Rescue treatments, elmiron, enablex, and others never worked, so if any of you know of a way to relieve any sx, let me know! havent slept well in over a year because of the frequency!

Have you tried eliminating the foods/beverages that are known to make IC worse? There are lists in each of the 3 links I provided.

Caffeine, citrus, other foods high in Vitamin C, and carbonated beverages are among the most common problem-causers. Cranberry juice, as I mentioned above, is a big no-no. Spicy foods may need to be eliminated. And the list goes on...

If you take a Vitamin B complex supplement (such as B-100) or a multiple vitamin with all the B vitamins, you might want to try discontinuing it while your symptoms are active. Nobody knows why, but it does seem that something in the B vitamins exacerbates IC for some people.

Drinking aloe vera juice helps some people, but you need to be cautious when starting out because it can cause diarrhea.

If you can get the burning/pain reduced, the frequency may lessen too.

[barelracer]

that too..

i did try the diet also....so many things not to drink/eat! doesnt seem to work on that schedule....neuro suspects neurogenic bladder instead of IC, but hasnt done anything to find out yet....but thank you!

[polopuppy]

I had my appointment and I am still not sure what is going on. I do know that is not a UTI (urine was checked again) and it is not prolapse of any sort.

I will have an ultrasound tomorrow to check for anything anatomical causing the symptoms. The most concerning thing is that I had a large residual of urine after voiding. A neurological cause is now topping the list of culprits but I hope and pray this is not the reason.

The physician I saw today was contacting my neuro regarding her findings. She never mentioned IC and neither did I. I figure there is much that must be ruled out before they consider that as a diagnosis. Kind of bummed. I was hoping for some relief.

[SpringOwl]

does IC go away

I keep a symptom chart going back to 2005 and the first thing on it says "Bladder Attack"

I had just dropped my young 4 & 5 year old at the time at my Mom's house for the weekend and was looking forward to a weekend alone with no kids with hubby.

It was one of those early warm spring days when your mood is great because the air is fresh.

And then something hit my bladder out of nowhere while I was driving. It was like someone had stuck a knife in my bladder. I have had infectopns in the past but this came on like "bam"!

I was about 4 miles away from home and didn't know if I could make it home, nut I did. I shoved Ibuprophen down my throat when I came home and spent the next two days on the bathroom floor with the laptop searching for answers.

Looking back, I should have called 911 and gone straight to the ER but I was in so much pain. At first I could not go to the bathroom, nothing would come out and then for the next 5 years I went to the bathroom, (pee), about 40 - 50 times a day. The pain was very bad for years. I could not wear a tampon and it took a long time to have sex. When I did have sex, I was in extreme pain but faked it.

I went to several doctors and had several tests but no doctor or urologist could find anything wrong with my bladder. In the fall of 2010, I began taking vitamins and my bladder and pain level went back to normal.

I suffered with this for 5 years with no answers. To this date it was the most painful, debilitating thing that has happened.

I will never know what happened and I have not been diagnosed with MS but I am convinced my neurological problems began with this "event".

I googled everything at the time and it sounded like I may have IC but I was never diagnosed with anything.

Jump to today and my bladder is normal but I can barely walk and have little use of my left hand and arm.

I am just sharing this to see if anyone can relate or this helps anyone.

I know this is long.


Amy

[barelracer]

relating

seriously, i can relate!!!!!
the frequency is incredible...and affects EVERYTHING in your life!!!!

there is nothing i have found that helps....i just know where all the bathrooms are where i am at, and have very understandind friends who will stop as many times as i need to pee on long(or short) trips!

my son, 12, has a similar problem, and we have to stop for him also.....we carry TP on trail rides too..

it sucks, and then with all the other sx's......
it can be overwhelming at times.

I hope you get an answer and some help with these problems!!!

sendind good thoughts your way.