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Is cystitis part of fibro?

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Posted 7/16/2008 5:11 PM (GMT 0)
I had a hysterectomy 9 years ago, have been on HRT ever since. Was diagnosed with fibro a couple of years ago. I've had recurrent UTI's over the last year. My doctor now wants to do some invasive testing.

Has anyone else had an increase in urinary issues after fibro diagnosis?

 

Posted 7/16/2008 5:23 PM (GMT 0)
Hi Nasha,

I havent experienced anything in any organs with fibro.  I havent heard of fibro related organ problems.  I'm sure you want badly to not have invasive testing done, but there is obviously a problem in that area, and if it was fibro related, hopefully your doctor would have picked up on it.

I'm sorry you are suffering these UTI's on top of fibro.  Maybe someone will come along with more knowledge.  Wish I could have been more help.

Gentle hugs

Diane 

Posted 7/16/2008 11:07 PM (GMT 0)
Hi, Nasha, and welcome.  I know there have been a few members with Interstitial Cystitis (IC) and have had fibro too.  I'm not sure if they are related but there have been times when people have been diagnosed with UTI's and it's really IC that is going on.  Here is a link, from the National Fibromyalgia Association all about Interstitial Cycsitis.  Hope this helps.

 

http://www.fmaware.org/site/News2?page=NewsArticle&id=7035

Sherrine 

Posted 7/16/2008 11:33 PM (GMT 0)
Nasha
I have had frequent urination with fibro and the dr said this was part of fibro.
Sometimes I feel I have a bladder infection, but test always comes out negative.
Also, dr told me that stress will increase the frequent need to urinate, so that
could also be why I have this sensation. It comes and goes, but dr said I should not worry about it. Its more of a nuisance
Posted 7/17/2008 7:50 AM (GMT 0)
I suffer from bladder problems.  I had them as a baby, so off and on all through out my life, I have battled cystitis.  I suffer from IC.  Please do not take the word of the dr. that you do not have an infection if you are burning and having to go frequently to the bathroom........and you only dribble.

With IC, you have an infection within the wall of the bladder due to the tiny microscopic pinholes in the lining of the bladder.  The infection is trapped within the walls of the bladder and it will only show up as a miniscule amount of bacteria on the dip stick testing.

I suffered many years with IC before the dr. diagnosed me.  One military dr. told me that he thought that I need to go to the psych dr. because I was going to the ER too often with only a little bit of infection.............as if it were a 'cry for help'............yep it was a CRY FOR HELP........I was burning and going out of my mine from the spasms.........but like many male drs. he was blowing off my symptoms

I found that using certain cleaning agents bring on the spasms.  (either by touching the chemicals or breathing the fumes.)  With IC, caffeine can cause the spasms, so can spicey hot foods or things with vinegar like mustard or bar b que sauces in my case.

I have celiac disease, and IC goes along with that........it is in the immune problems along with the fibro.

My dr. said that many drs. will only give you some loopy meds to do the testing for IC, but because I was so sensitive to the spasms that it would be torture and she did the test while I was under general anest. having a laporscopy for female issues.

I have sense had a bladder tac and thankfully my IC is calmed down for now.  I do occasionally get flare ups and I self medicate (with macrodantin and the oxybutin to calm the spasms.)  If that doesn't work, then I know to seek my dr. out for more testing.

I hope that you find out what is causing the trouble.

You might find if you are taking any medications in the aspirin family (advil, anti inflammatories) this can also bring on spasms in some people.  (I also had trouble when my husband was on those medications.)  I also found if my husband was on antibiotics that I was allergic to that it brought about another round of infections.

Posted 7/17/2008 11:18 AM (GMT 0)

Thank you so much ericsmom, Sherrine (that site is so informative!),  Tootiebug58, and Mrsppmrsky!

You all gave me great information and a new, broader perspective on this.  Yesterday was my last day of Cipro (I took the full course this time since I called him on Saturday and he said to take it all)   --at my last dr. appt when I explained I often feel like a uti is coming on, he'd tell me to just take a couple of antibiotics (not the full dose).

So that's what I did. Perhaps I've built up an immunity to the strain of bacteria? (I did always test postive for bacteria).

What's stronger than Cipro? Should I be on it longer than 5 days?

Again, thank you all again for responding!! It helps so much to know that someone out there reads and cares enough to respond!

Posted 7/17/2008 1:25 PM (GMT 0)
Nasha
When I did have a UTI the dr prescibed MACROBID........this is used for
UTI's only. I built up a resistance to Cipro 5 years ago, and developed an allergic reaction. The Macrobid is great, NOT ONE side effect, and it works within the first few hours. You might want to check with your Dr, and for me, it is less expensive

Hugs
Posted 7/17/2008 2:54 PM (GMT 0)
Nasha, are you going to an urologist? or just your primary care dr.? If you are just going to your PC, then I would suggest you go to the urologist. There are several tests that they can run. (one was not flattering at all that I had to do.) They put dye in me and then as the test was being done, I had to release my bladder. The test was to see if my bladder was spitting back in to the tube to the kidneys.

the test for IC is that the dr. blows your bladder up with air to a very large balloon, they take the microscope and examine the lining for pin holes.

there are several other tests that were done to me by the navy drs. and they would each repeat the testing. (that is military drs for you. LOL) My private practice dr. is so much better.

I usually was given macrodantin or macrobid......whichever was cheaper for the navy. LOL I got where I could not take pyridium (turns your water orange) azzo (turns it blue) and the dr. gave me oxybutin for the spasms. It got so bad at one time that the spasms were JUST LIKE labor pains and it would make my intestines empty on their own until the spasms would stop. (Now my PC just gives me a refill on the medications to have on hand for when a flare happens.)

I had to take macrodantin for 1 yr daily to try and treat my system. If you can stand cranberry juice, it is great to drink. I have to split it with sprite and make if very cold to keep it down, but that is more for having to had to drink it for so many years everyday.
Posted 7/17/2008 4:16 PM (GMT 0)
I'm not going to a urologist--I've been seeing my gyn for all this stuff since he also does the bladder tac, treats incontinance too.

After I have my yearly mammogram, I'm going back for my HRT presciption, and will talk about all this---it's next week.

Do they perform these tests under general anesthesia? or at least give you something to relax you?? I'm such a chicken.

 I also had a horrible experience with a urologist about 10 years ago---he enlarged my urethra since it was very very narrow (I was having similar symptoms)  by inserting some type of instrument which stretched it out--he did this 3 or 4 times (each enlarging the urethra a bit more each time).  I wasn't given anything to be calm, for the pain, nothing. I literally screamed, cried---it was horrible. What should have been a clue as to what was about to happen was that a nurse was on each side of me, gripping my hand/arm and holding/bracing their bodies against mine.

Thank you for sharing!! Any further encouragment, advice is so welcomed!!! Thank you all.

Posted 7/17/2008 4:56 PM (GMT 0)
Personally, I would find a new urologist. They specialize in the pain that you are having. I also had to have a bladder stem stretch, but that was when I was a baby. My bladder stayed 1/2 full at all times. That was done under general anesthesia. (My last military urologist "95 said that they no longer perform the stretching like I had as a child.)

I would just go for a visit and talk with the dr. at first. Talk with friends or your PC dr. and ask for a referral to a good dr. that will listen to your concerns about the repeated infections.

I think that if I were to be extremely nervous about a procedure, my dr. would give me something. When she had to examine me before my surgery last year, she said it was going to pinch and it did.....it was manageable though. After the suspension that she did (they took a tissue and attached it to my pelvic bone and it lifted the bladder) my dr. knew I was in pain and gave me morphine in the recovery room and she made sure that I had pain pills when I needed them.

Dr.Rookus knew me well enough that I would not take advantage of the pain. She also had suffered wtih similar problems with the suspension, so she was very understanding. I love her dearly! She takes time to explain anything she wants to do and we discuss the care and come up with a plan of action together. (I love this in a dr.!!!! My PC dr. is also this way. THANK YOU LORD!!!!)

I have found if I sit down with the dr. before hand and just talk with them and explain what I am looking for in a dr. and explain that I like to know exactly what is going on, I do not come to their office until I have tried everything that I know how to do to make things better, home remedy, taking homeopathic plans of action, then I come as a last resort because I do not want to waste his/her time nor mine by taking up office hours, they seem to tend to listen better.

I can't believe that the dr. did not give you anything for that procedure you had to endure!!!!!!! (I mean I believe you in what you said, just not him being such a JERK!) That would be extremely painful.

I think that fibromites experience pain there to a much larger extreme. I have experienced bladder pain so often and so long that I just cringe at the first twinge in that area. I think that is because I know how BAD it can get in a heartbeat. LOL My dr. understands this and is very compassionate in that area.

I hope and pray you are able to find a wonderful, caring, compassionate dr. to help you with your problem.
Posted 7/17/2008 8:14 PM (GMT 0)
 

Nasha,

 

I've never had bladder problems, but I have read where fibro causes irritable bladder. Does it come and go like other fibro symptoms? confused confused

Posted 7/17/2008 10:03 PM (GMT 0)

Mrsppmrxky,

I think I'll take your advice and find another urologist--there was no way I'd return to the one who literally tortured me though! When I returned to work the next day and told a friend, they too were appalled at what this idiot had done!  My gyn has the same opinion of him as I do.  You're very fortunate to have great doctors.  They are really hard to come by. I can't imagine having spasms as bad as labor pains--you poor thing!!!

The pyridium didn't work this time--it always has before. I'm starting my list of questions to ask when I go next week.

Bev, my symptoms do seem to come and go as fibro symptoms typically do---however, certain activities do aggreviate things. I try to drink a lot of water, that kind of thing.

Posted 7/18/2008 12:19 AM (GMT 0)
Hey Nasha: here's a couple of possibilities from my experience: I also have high blood pressure. The med they give me has a diuretic in it. This makes me run to BR every one to two hours. Also, having had a hysterectomy also, lets face it, the muscles down there get slack. Three, as I seldom feel like eating, most of my nutrition comes from fruit, veg. and fluids. So many possibilities. There was something on the news today about Cipro. I didn't catch the whole thing but you might want to check it out. I used Microbid for my last UTI, it worked but I did experience some nausea. Gravol was on board and I got through it. Now I'm fanatical about toilet cleanliness. Don't use paper which is sitting on floor. Don't sit, squat. Carry disinfectant. I always disinfect my hands before and after. After so many infections, one gets hypervigilant. Bladder leakage is also common as we age. Best of luck with Fibro.
Posted 7/19/2008 7:24 AM (GMT 0)
Nasha- 2 things come to mind. 1- your doc should not be telling you to just take a few doses of an antibiotic and then stop. That can cause whatever microscopic bacteria to grow faster than it would without the antibiotics. That may be a partial cause of the recurrence. Azo also 2 other products that I am looking into- one is a cranberry tablet for bladder health if you can't handle the juice. I can't- I love it, but it has too much sugar for me. Also there is a product that has strips so you can test yourself to see if an infection is happening if you don't want to go to the doc all the time. Fortunately, uti is not something I have too often, but I do keep the Azo pills for anesthetic on hand all the time. What other things are you doing for the infections? I'm sure you have tried everything. I have heard that anything slightly acidic- like lemon juice added to water, etc, can help. Any truth to this? I hope you feel better soon! I agree with the others about finding a new doc- what happened to you is frankly abusive and inhumane, in my opinion. I'm sorry you had to go through that. Do some exploring before you agree to the procedure you are nervous about. Trust your instincts on this one.
Posted 7/19/2008 12:13 PM (GMT 0)
I use those Azo test strips now---I used it a week ago (Saturday) and it was dark purple (indicative of infection) and that's when I got the 5 day supply of Cipro. (250 mg 2x a day).

after taking all the meds, I was feeling a little better, not completely though. I figured since I have dr. appt. this Thursday I can wait. I didn't use the test strip since I was feeling a bit better.

Ya, things must be sagging down there--9 years since the hysterectomy. Some days I do have a tiny bit of leakage==not every day. Everyday though after I urinate, I feel like there's still a tiny bit left in there after just a couple of minutes. Sure enough, there is. I do the keagles daily.

I just tested again and it's the same dark purple., Things really still don't feel right. I should have tested the day after I had taken my last cipro. I feel stupid.

This so sucks.

I'm so careful with hygiene (who isn't?), drink lots of water---cranberry juice upsets my stomach, so I will try the tablets.
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