Is it a urinary tract infection or interstitial cystitis?

weesa · February 2011

I've had a flurry of pm's here lately about urinary tract infections (uti's) and interstitial cystitis (ic) that I've answered briefly and--I fear-- inadequately, with one or two sentences.Here's a better response:

It's no wonder so many of us are bothered by pesky bladder sensations--many of us have had chemo and various radioactive drugs to help with scans. We all know chemo can do a number on the veins in our arms--then consider that it ends up sitting in your bladder.When you add an estrogen-reducer on top of that (bladders like estrogen) you really run the risk of your bladder complaining.

I started out a year after chemo with a dull ache in my lower pelvis not unlike a periody sensation I used to have. Since it was the least of my aches I tended to ignore it.I was starting to pay attention to my overall health again--not just my breast cancer. I had resumed my aspirin a day,was juicing, taking vitamins like vitamin C.(Lots of acids!) Starting to feel like my old self again. One morning I got up and peed and had that awful sensation we all know--it burned and felt like I had not emptied my bladder. I immediately thought it was a uti, which I had not had in years, but used to get periodically after an especially good roll in the hay.I ran out to the drug store and got some Uristat over the counter and it seemed to help. But then my urethra started to burn and I high- tailed it to my doctor. She took some urine to culture and in the meantime gave me an antibiotic. I felt like it gave me some relief (the diabolical thing about IC is that it tends to come and go.) But then the next week it was back with a vengeance and I was back in her office for another antibiotic which she gladly gave me, even tho the lab had not been able to culture anything from my urine. This scenario repeated itself a number of times, with her telling me she had not found the right antibiotic yet.She did say my urine contained microscopic red blood cells, however, but no bugs. (Urine is supposed to be sterile, by the way.)

Finally I became alarmed at the increasingly exotic and powerful antibiotics I was taking and referred myself to a urologist in Asheville. The urologist first instilled just plain water in my bladder and it felt fine She then pumped it full of a solution of potassium chloride, which was excruciating for me, and explained a normal bladder would not find this uncomfortable. She examined the inside of my bladder with a lighted cystoscope and discovered the protective mucosa which usually lines the bladder and protects it from urine (think about how a baby's bottom can look with a wet diaper) was missing and there were small pinprick ulcers (here's where the blood came in). My urethra, which has pretty much the same make-up as the bladder, was in the same bad shape. She explained that the chemos I had taken, the suddenly reduced estrogen, the highly acidic diet and (stupidly I had been drinking gallons of cranberry juice, another acid) had all conspired to make my bladder a wreck. She assured me I would eventually be more comfortable but it would take a while.She was pretty sure the fooling around I had done with antibiotics and cranberry juice had put me from the mild category to the moderate category.

I started taking Elmiron (which rebuilds the mucosa lining) and Urelle, a pain reliever for the bladder. I stopped my highly acidic diet. Got some over the counter Prelief which will neutralize your food and render your urine more basic-- because it is pretty hard to avoid acids altogether. I did start improving gradually. I still will get unexpected flare-ups, and the urologist gave me enough medication to always have it on hand. Reacting quickly seems to avert a major flare-up.

Recently I had a nuclear bone scan because I had so much rib and sternum pain (the scan was fine) but the radioactive material burned my bladder again. My urine became cloudy, smelled like a dead rat --these are tell tale signs of IC. It was positive for microscopic blood and pus but no bacteria, so I went back on the routine and it took four months to get the inflammation from the bone scan injection subsided.

Some women are prescribed a particular anti-depressant which depresses bladder sensations--imipramine, but this did not help me-- it did turn me into a zombie. I got a book which helped by a woman urologist, I think the title was something like, You Don't Need to Live with Interstitial Cystitis and it helped. I no longer have it--passed the book onto somebody newly diagnosed. I have a friend who is not a bc survivor but who has severe IC--her symptoms are not at all like mine. It can have a wide variety of presentations.

This is why I shudder when I read about somebody here thinking she has multiple bouts with a UTI and is drinking lots of cranberry juice. Certainly there are many of us who come down with uti's every year--they are fairly common. And some of us unfortunate ones can get both--a uti and interstitial cystitis! But since it only took the urologist I consulted ten minutes to figure out what was going on with me, and since many physicians seem not to consider interstitial cystitis, even when a urine culture is negative, it seems prudent to talk about this.

By the way the cystoscope was not painful, maybe just a bit uncomfrotable, but well worth it in the long run.

everyminute · February 2011

Weesa - thank you for all the info. 6 weeks after my hysterectomy, about 9 weeks after finishing chemo, I started running again. I would have visable blood in my urine after the run (ranging from light pink to BLOOD red). I would also have UTI symptoms - mostly pain and pressure but no burning or fever.

I went to my gyn who referred me to a urologist who in turn scared the crap out of me talking about bladder cancer, etc.

Long story short - after scans (which I hate) and a cystoscopy (sp?) - My bladder was ok but I had/have 15 kidney stones. Some in my kidneys but some in my urethra and bladder (which is why I would have blood in urine - I was literally being cut by stones while running)

I was supposed to have surgery (because there were too many to break up with ultrasound or meds) but pushed it off to complete a half marathon - that was about 2 years ago :-/ My urologist assured me that he would do surgery whenever I was ready but that I wasnt risking anything by not doing it either.

I have had two somewhat major flare ups - one was on a cruise with my daughter - severe kidney pain - doubled over almost puking -lasted about 45 mins. And last month I had another - the stone was lower so it felt just like a UTI - it was a large stone and was not able to urinate - tough couple of days and nights but it passed. I have passed another one that I know of but it wasnt too bad.

I dont know if chemo caused them, being dehydrated and uric acid or if I have always had them (I had some similar symptoms before chemo occassionally) and/or if I continue to make them. I could also have that tested but I hate doctors and dont wanna

So I dont have IC or UTI!

geewhiz · February 2011

Wow. Wow. Wow. Great information. Thanks to both of you for sharing. It's definitely an eye-opener.

Kindergarten · February 2011

Thank you so much for the great info.I don't know if this will help you all, but for a few years after my treatment was finished I was plagued with UTI's and kidney stones. Finally after many courses of different anitbiotics, scopes, tests, surgeries to extract the stones, etc., a nurse friend told me about a juice to buy in the organice section of the grocery store. It is called Tree of Life Cranberry Concentrate. I dissolve a tablespoon of it in a 8 ounce glass of water every morning and I have not had a UTI or kidney stone in 2 years. It is an unsweetend juice, so it does not have a pleasant taste, but I will drink a glass of water right after. I asked my onc about it, and even though he would not commit to saying, yes that is the cure, he said it can't hurt you. Have a great weekend, Kathy

carcharm · February 2011

Great info. Question-I used to work at Fed Ex loading pkgs into an airplane. I kept getting UTI's and was sent for bladder pressure studies. The urologist wanted me to quit my job right than because he said my bladder pressures were thru the roof. I don't understand the whole bladder pressure thing.I to had microscopic blood in urine. He said it was the bending and picking up. I know it's not related to your IC but thought I'd post to see if anyone knows about it. I have contant urine leakage which since chemo has worsened. I am 51.

barbe1958 · February 2011

Great thread!! I, too had back pain that was finally diasnosed as a 1 cm kidney stone that couldn't pass. I had it blasted in July of 2009 and went home feeling lucky. That night the stent they put in (that I was supposed to pull out myself on the following Monday) started to come out. I went to the ER as I was afraid my urinary track would scar closed. The doc in the ER brushed me off, but wouldn't release me. 13 hours later I saw a Urologist (not mine) who apologized for taking so long. He gave me pain meds and told me to go home but if I was still in pain to come back.

I returned the following night (Sunday) and was finally admitted. I was on morhpine every 4 hours with Torredol every 4 hours (alternating 2 hours) until the following Saturday!! What they found out during a double-contrast CT was that part of my kidney had died!!! It was the spasm of it dying that was causing the pain. They didn't "admit" it, but it was possibly the stent that did it, though I needed the stent.

I had a follow-up of my own Urologist who said we'd try to make sure I didn't get another kidney stone - mine are caused by uric acid, and gave me Allopurinol which I took until December of last year when I found it was possibly causing me more problems as it drew the uric acid into my blood stream and my joints were killing me!!

I want to be checked for IC as I looked it up about a month ago. Right now I am on a 3-4 month regimen of low dose antibiotic to see if my symptoms subside but I still get that pelvic pressure from time to time so I know my body is still doing something....sigh.

Thanks for the post weesa, it was very informative and validates that we really have to be on top of our own care!

Ellie1959 · February 2011

Very informative - I am plagued by what seem like bladder infections - but not quite. Maybe this is too much info - but usually after sex - I've had bladder issues all my life - they kind of run in my family but never knew about this - I did have a bladder biopsy when I was like 20, all I remember is it felt like they took a paper punch and took a chunk out of my bladder. I've always been vigilant about getting up after sex and peeing etc. I wonder now if this is what is going on. I'm allergic to sulfa so I usually have Cipro on hand.

barbe1958 · February 2011

Cipro is the gold standard, but constant use isn't any good either. May be TMI, but I, too, would sometimes get a UTI from sex, but only a certain guy! I knew I couldn't marry him...... his chemical make-up was obviously too strong for my body to handle. Eh, and the sex was okay, but not worth the UTI once I figured it out! hehehehehehee

Ellie1959 · February 2011

Well, this is my hubby so I have to put up and shut up - kidding - it's so worth it! Kiss

minxie · February 2011

ugh, I am dealing with something right now and not sure what to do about it - help!

After the birth of my son I was diagnosed with prolapse - both my kids were big boys, vaginal deliveries. My bladder fell, and on top of that, my uterus. I didn't want surgery so I decided to live with it, and it really hasn't been bad - things stay put for the most part, I'm not incontinent. But then I got BC, chemo, and I've been thrown into chemo-pause. And I definitely feel things hanging lower, if you know what I mean.

A few weeks ago I was stuck in traffic for hours in a snowstorm while having to pee really bad. That's when all the burning started. Now it's pretty much constant urethral burning if I'm sitting or standing.

Sigh. I'm drinking cranberry juice and hoping it goes away. I don't want to call my oncologist, since this isn't really their thing, though I think it's chemo/estrogen related. Plus they'll make me come in for a visit and I hate going there. I don't feel like trekking all the way to my gyn for this. I don't have a primary care doctor. I've thought I've maybe a doc-in-the-box type place, but that's kind of embarrasing... ideas?

barbe1958 · February 2011

Apparently you can buy pee-on strips at the pharmacy. Check it out. If you do have an infection you need antibiotics.

My nephrologist told me to go pee every time I think of it. It keeps you from building up to a painful point. That sounds just horrid minxie!!

blondie45 · February 2011

Thanks for all the information. I have had IC for 20+ years now. Surpirsingly to me my bladder did fine throughout all of my chemo, etc. I am hoping it holds up okay through my DIEP in 2 weeks.

Connie07 · February 2011

The pee sticks have limited information. Blondie, you probably do need antibiotics and possibly a bladder and or uterus and or urethral sling. Your GYN would be the one to go see. My urethra has prolapsed, causing incomplete emptying of my bladder. GYN said he can do a hammock sling sort of thing to hold it upright. Surgery sounds horrid. Insurance denied it. I'm fighting.

OMG I'm so glad to see this thread, not glad for infections, but I've been dx with UTIs for years and years and get the same run-around til now my flanks hurt constantly and there is abdominal tenderness most of the time. I'm afraid there may be kidney damage but still get the run around.

I swear, Barbe, we have so much crap in common it's kinda scary. You are so right that we have to maintain our own health records and continue to practically harass the doctors just to get them to HEAR US and HELP US.

~Connie

Bugs · February 2011

Weesa, great thread! Makes complete sense that chemo would do a number on the bladder.

karen1956 · February 2011

I'll have to remember to share this info with my DD...

minxie · February 2011

thanks guys. I think I'm going to have to bite the bullet Monday and see my gyn, this is getting unbearable. We'll see if it's an infection. If not, well we'll see if there's anything they can do. I am NOT looking forward to any more surgery!

weesa · February 2011

Hey, girls, thanks for responding. We have a good resource now for people with bladder issues as a result of bc treatment, or the result of other stuff, especially kidney stones.

Blondie45--how have you survived 20 years of ic? Do you have any tricks to pass on?

Minxie--Keep me posted about what is going on with you.(Is it like Pelvic Organ Prolapse?)

I've always wondered when I see people stalled on the interstate in a blizzard how they pee.

Everyminute--ouch. Glad you are better at least now. Your description of being cut from the inside by your kidney stones made me feel not so bad about my bladder problems.So did Barbe--not going to complain so much about plain old ic. Thanks!

Kindergarten · February 2011

Hey, Weesa, We have always kept a bucket in the car, just for those interstate emergencies, and stuck in traffic issues, gross, but we had boys and me with bladdder issues. Crazy, but true!!!! Have a great day, Kathy

minxie · February 2011

well, back from gyn appointment with some news I didn't really want to hear - no sign of major urinary tract infection. What I have is vaginal thinning and atophy due to chemical menopause/no estrogen - makes the tissues burn and painful, especially when urinating. So at the age of 44 I have the vagina of a 70 year old. Awesome Cry

My prolapse has also worsened, not surprisingly - estrogen is what keeps it all together. When it worsens, it falls further down, and everything gets more irritated, especially when sitting. We talked about surgery again to pull up the bladder, but I'm not ready for more surgery of any sort. So she's recommended Premarin cream, which is a topical estrogen. I have to check with the oncologist and see if they have a problem with it. I am triple negative, so no hormone receptors, but it still makes me nervous.

Note to the powers that be - for my next life, I am coming back as a man. This is total BS.

weesa · February 2011

oh, yuck! So sorry. I do want to tell you one of my best friends ( not a bc survivor) just went thru this surgery to pull up her bladder after putting it off for many years. She had an epidural instead of general anaesthesia, and was back to work in about a week. Seems relieved she did it and regrets not doing it earlier.

Kindergarten--I guess you know you are a cancer survivor when you have two bath towels and a bucket in the back of your car...

Lynn1 · February 2011

Thank you weesa for this post -- lots of very good information here. I really apprecaite your taking the time to write it all down.

Kindergarten · February 2011

Dear Weesa, Absolutely, thanks for making me chuckle. I Miss our sons, since they are on their own now, but not the bucket. God bless, Kathy

Anonymous · February 2011

minxie

I had very large babies, urine leaks after. It is too late (with the prolapsed uterus) to do Kegel exercises?

That little exercise no one in the grocery line behind you knows you are doing. It took care of the problem for me.

S3K5 · February 2011

Hi Weesa,

You have described exactly what I have been going through since 4-5 months. I have had all kinds of tests. No bacteria in culture. Waiting for the results.

I have been on Femara since two years and lack of estrogen is really causing problems. I don't know what kind of treatment plan my urologist has, but at present nothing helps.

Thanks for posting this - now I know I am not alone with this kind of side effect!

Desi.

barbe1958 · February 2011

Twice when I have provided urine for a sample, they have come back and said "it's contaminated". I wonder if that's the blood part and they want to make sure I'm not menstruating or something. They've never told me, but my second sample would be the same as the first one. But maybe not as "strong" as the urine wouldn't have been sitting in my bladder as long....

I see my urologist on March 22 after being 2 months on antibiotics. I have a LOT of questions now!

weesa · February 2011

barbe, I think they might have meant that they did not have a "clean catch" when they said your urine was contaminated. You might have gotten external bacteria in the urine which makes it contaminated. My doctor always has wipes on hand to clean yourself off when donating urine, so the external bacteria doesn't confuse the issue.

Desi_NJ-- you are why I posted this forum. I would love to know I have helped somebody else down this long confusing path to diagnosis. Keep us posted!

Wonderland · February 2011

weesa,

I want to thank-you for your constant education about ic. Last April I had a UTI. Treated it but it returned. I was in alot of pain - went to emergency room - had a CT- found out that I had recently passed a kidney stone and I still had one in my kidney. I was shocked because I had no history of stones.

In the fall I read some of your posts about ic. Really, really interesting. In Nov. I developed another UTI, called my gyn and was given cipro. Cleared up while on the medicine but came right back when I finished it - this time much worse. I heard your voice and reread your information about ic. I immediately made an appointment with an urologist. He gave me microbid and it cleared up. He also had me come back in for a cystoscopy. Luckily, my bladder was fine (I got to look at it on the screen as he did the procedure).

Thank-you for sharing your experience and educating us that our pain may not be what we think it is. I wasn't looking forward to the procedure but I remembered you had written that it was not bad. It really helped me.

weesa · February 2011

Wonderland--glad your bladder is okay, because they take soooo long to heal.

I loved Minxie's comment that next time she plans to come back as a man! We really did seem to get the short end of the stick (pun on purpose.) I think it was a city planner who designed the first woman--who else would have put the sewage system right next to the recreation area?

heartnsoul76 · February 2011

weesa - THANK YOU! The docs just don't listen! I have been complaining about my bladder for the last year, beginning a few months before BC diagnosis. I thought it was a UTI, so I went to the gyn who said, "Well, I don't see any bacteria in your culture, but here's an antibiotic anyway - it might help some." Just as I was beginning to suspect IC, I found my tumor and started on this merry-go-round. When I found out I would be getting Taxotere, I read up on it and it said it could irritate the lining of the bladder. I told my onc my bladder was already irritated so she kept me supplied with pyridium while going through chemo. Finished that in October, then rads, and started Tamoxifen January 1st.....a-a-a-a-nd here it comes again! I bet the Tamoxifen is irritating it now - AARGH!

So I thought, okay, I've got too many doc appts ahead of me right now, what can I do to naturally soothe my bladder. I don't think y'all are going to want to see this list of foods to avoid that can irritate the bladder....but here's the link. And I think they've ruled out every beverage on earth except for water!

http://www.ic-network.com/diet/#foods

barbe1958 · February 2011

Weesa, I had asked them if I had to do the wipes and provide mid-stream and they said nope. My first thought was the wipes, too.....

Because of my gout, my diet would be so restricted I couldn't eat anything!!! They gave me 4 pages of food I shouldn't eat; I asked for ONE sheet of foods I could eat. He sadly shook his head.....sigh. My stone was uric acid.

minxie · February 2011

well, oncologist said a big NO to the estrogen cream they're going top have me try something with just Vitamin E and see if that helps.

Janewell, I was doing kegels after the prolapse started in 2005, but then things stabilized and I forgot about them. Now I think I'm past the point where they'd help.

Is it a urinary tract infection or interstitial cystitis?

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