I am having bladder issues. Sometimes I don't make it to the bathroom on time. One issue is urgency with some pain, but then sometimes it's a lot of urine, and sometimes very little. But after I urinate I get pain that is stronger and can last for hours.
I've had several urine tests for bacteria which were negative. I asked my diabetic Dr for one, and they did a couple of them before my hip replacement. ( they did it twice cuz the first time they found some inflammation but no infection, the second time I think it was normal)
I know that one of the symptoms of Sjogrens can be interstitial cystitis. I started doing searches on the Internet. I need to do some searches here.
I have an appointment with my pcp in a few weeks. I'm also wondering do most people see a urologist, or do some see a gynecologist for the bladder issues? I have a gynecologist (one that is also a oncologist due to previous uterine cancer), but no urologist.
Tonight I'm wondering what to take for the bad pains: hydrocodone, tramadol, or a muscle relaxant. Decisions, decisions. All of these bladder problems have been going on for about a year, but is getting worse. Between the pain and the frequent urination, it is slowly driving me crazy. I think a pain pill tonight might help me sleep.
Bladder cramps hurt! (OK, I know, so does everything else) :-\
PS: I don't think I knew that ok is supposed to be spelled with all caps, at least according to this spell check. I guess I've been wrong all these years . . .
okay is what my spell check recognizes. I hope that something helps you.
Doxie please have that checked as soon as possible in case it is interstitial cystitis! I'm sorry this has been painful for you for the past year! If it's not one pain, it's another, right?? Will be thinking of you...at least you can stay home and try to relax as you fight these battles. Take care ;)
Dear Doxie,
I wrote a long post about IC. But is disappeared when I ran the spell check...sob!
I have IC. There isn't a lot that can be done for it, but it needs to be monitored.
You must see a urologist and the only true diagnostic test is a cystoscopy, outpatient procedure.
Your bladder must be filled with fluid so the damage to the wall can be seen.
There is a medicine of debatable value, called Elmiron (yes a bad country song name) that is supposed to coat the wall of the bladder, but I'm allergic to it.
Sometimes they instill various medications into the bladder, but those are also of doubtful value, tho' if one works for you, great!
I have had the diagnosis since 2009. It causes me to get UTIs easily, since the walls of the bladder are inflamed and bleeding. After the UTI I get horrible rebound pain, can barely walk or even stand up.
Heating pad will help, but actually exercise in a reasonably warm pool helps me the best, even not so reasonably warm. Stretching seems to be the key.
It totally sucks, and people with severe cases can become disabled.
About 50% of people with Sjogren's have IC, and 50% of people with IC have Sjogren's. But both often go
undiagnosed unless they are severe.
Most of the time it's just another thing that I have until I get a UTI or a pain attack. It does make my urine smell horrible, and that is insult to injury since I spend so much time peeing!
You need to see a urologist to sort out what it IS that you have, as there ARE other conditions with similar symptoms.
I didn't develop mine until very late in life, so I'm not terribly concerned about progression.
But it can lead to loss of function and even loss of your bladder when at its worst.
Keep us posted
Don't worry (sorry bout that loss of bladder thing)
Hugs
Elaine
NOT spell checking since that caused my last post to poof away.
You might try watch what you eat such as citrus and tomato based foods. I was tested years ago for this because of the constant need to go to the bathroom. But they found that my bladder is just overactive. I joined the ICN to read about IC. They have a diet that a lot of them follow. I still go there because so of the women have the Interstim and it's the only form where I can talk to women about the Interstim. But you do need to go to a urologist or a urogyncologist and get it check out soon.
Another medication which might help is pyridium. It makes your urine bright orange, but it targets the bladder and urinary tract areas, I believe. I did have a raging urinary tract infection a couple of times, and the pyridium really helped to take the edge off. It may work for bladder issues in general, though.
Also, a friend of mine had something up with her urinary tract (I can't remember what it was called, unfortunately), but she found the pyridium did wonders until she was able to get surgery done.
So maybe something like that could help take the edge off for you.
You need a smooth muscle relaxant.. not one for skeletal muscle cramps. So definitely go to a urologist for diagnosis and proper treatment. There's no point in needless suffering.
Warning.. many of the bladder meds are very drying.
www.ic-network.com
www.ichelp.org
I promise you I read all the posts through. But I miss things sometimes. So please forgive me if this was clarified already. What I am curious about is, what kind of pain are you talking about? I have crampy pain in my bladder after going to the bathroom sometimes. It doesnt last too long. About an hour or so. And is not everytime. It kind of feels like it throbs. Is this what you are talking about? I have been wondering about this myself.
Luna
I get this too plus am totally bladder incontinent. Was warned about the drying effects of meds which is why I haven't been put on medication but I have to wear those really thick Tena Lady pads all the time otherwise I end up soaking myself several times a day. The only tests I have had though is a scan whereby you go to the loo ad once you've been they scan your bladder to see if you are emptying it properly which I am so they called it irritable bladder.
The whole thing sucks majorly.
The one thing I know is that cranberry juice is NOT recommended for IC.
Diet doesn't make much difference for me.
The pain I have when the iC is on a tear is really bad lower back pain, around to the front. Like a labor pain that doesn't ease up.
IC is an autoimmune condition and really can't be cured with antibiotics or anything really.
Elaine
Elaine, that sounds painful.
Luna
Quote from: Carolina on February 25, 2012, 04:00:41 PM
IC is an autoimmune condition and really can't be cured with antibiotics or anything really.
Elaine
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My IC is 90% better following several years of antibiotic treatment for Lyme and babesia.
Thanks for all your replies and links etc.
Elaine, I appreciate hearing about your experiences, it helps me as I decide what to do. I will find a urologist and See what he/she has to say about it. I guess I've tried to ignore the pain since the cultures were negative, but it's getting worse.
I'm going lot find my heating pad tonight. Great advice!
Luna, mine throbs too, and I feel like they are bladder cramps. It goes on for several hours. I also have to urinate often. But sometimes, with the lighter pain and feeling it, I go because I'm afraid of the incontinence. Luna, do you get any symptoms before you urinate?
Wild thing, I never thought of irritable bladder, makes sense though. I do have small intestinal bowel over growth and irritable bowel, so maybe they're related. I have back pain, but I've assumed it's u related since I have a bad back. It's so hard to sort everything out.
I'll let y'all know what I find out from the doc. Hopefully it won't take too long to get in. Though the dx process . . . You never know how long that will take.
PS: Elaine, I've lots my posts going into spell check several times. Its frustrating. I've assumed it's something to do with my iPad. Now I copy my post before I spell check just in case . . . And I've had to paste it a lot too.
hello Doxie.
My daughter was diagnosed 8 years ago with interstitial cystitis .
It started with her 1st pregnancy. She actually had a couple bladder infections during her preganacy, they treated her for them. Then she continually kept having the symptoms but no white blood cells, no bacteria and no blood were found in her urine.
Eventually her ob/gyn referred her to a urologist and after a cystoscope and biopsy she got her IC diagnosis.
She takes Elmiron and Elavil , so if you have IC, there is treatment.
eye2dry
I was diagnosed years ago and was given Urised, but I had a severe reaction to it so I gave up taking any medication for it. The urologist performed cystoscopy in his office - didn't take very long to perform.
There is a diet - basically you avoid spicy or potentially irritating foods - but I found it didn't make any difference for me.
Hopefully yours will be like mine in that it flares up sometimes but mostly it's mild enough that I can live with it.
I was diagnosed with Sjogrens in 2005. I was just recently diagnosed with IC. i too have read alot on internet and there are very limited options. First you need to find a physician that will listen to you and try to help you. i seen over 5 urologist before I diagnosed myself. After researching I finally found a doctor who believed me and knew what I was talking about. It is very common in Sjogren patients. I found that using splenda and artificial sweetners brings it on for me. I start getting bladder spasms soon after usng it. Also stress can bring it on. So far I am using heating pad and Levisin. I am not to the point to try Elmiron. Too many side effects including hair loss. The pain get unbearable at times and going to the doctor and being told you don't have an infection only makes things worse. Some will treat you like you are crazy, the pain is not make believe. Find a compassionate physician. Good Luck!
Doxie, I have to urinate a lot also. I drink water constantly cause the medication for saliva makes me sick. I sometimes get symptoms first. but most times it just hits me while Im urinating and stays with me for a few while. Its not just when i have held it too long. So that is not it.
Luna
I get this too and it is miserable. It also burns like crazy when I go to the bathroom, which is frequently. I've noticed that it seems to happen in the middle of my cycle. I get yeast infections a lot too, and I noticed that when I treated the yeast (just with monistat, usually) my bladder pain got better. I had read that a yeast infection can get into the bladder so I guess it makes sense. I don't know why it's all worse at that time of the month, hormones maybe? If you have any yeast type symptoms you could try it though. Hope it's something simple and you feel better soon.
KatieB
It has eased up a bit thank goodness. I guess there are flares and better times. I should start keeping track of what I eat and drink.
Hey Derrie, I started using a heating pad and it has helped! Welcome to the forum, it's a great place!
Katieb, great minds must think alike, because right before your post I had pulled out some diflucan. I keep some pills on hand since I get yeast infections a lot. I know they did give me antibiotics during and after my surgery. However, I don't know that I was thinking it might help the bladder though, but I'm game for anything that might help.
I sure appreciate this forum and everyone in here! 8)
Yes, it's true that infections make IC much much worse.
So YES, antibiotics can help, as Jazzlover pointed out.
Unfortunately the years of antibiotics I took for my chronic UTIs also caused my peripheral neuropathy.
And the PN is still here long after the chronic UTI and the antibiotic are history.
sigh.
My husband doesn't understand why they don't instill an antibiotic directly into the bladder, but i imagine it wouldn't STAY there long enough to help.
Being healthy, with no infection greatly reduces the pain for me, but this can be a very disabling condition, with all the peeing and then loss of function, damage to the bladder wall and so on.
I guess my idea is that there isn't a CURE for the condition.
I find heat helps during a flare, and exercise (moderate with stretching) in the water works wonders!
Hang in their Doxie, it's just another tricky thing to deal with!
Hugs
Elaine