CYSTITIS WITH A NEGATIVE URINE CULTURE

Kidney and urinary tract
1

I am 47 years old and I have been suffering on and off for almost two decades with bladder inflammation.   Yes, on occasion I have had Urinary Tract infections....I do know what those are, but througthout the years I have questioned my pain after many negative urine cultures time after time.    I have gone to the urologist on occasion and have had cystoscopies done and everything checks out OK.   I thought I might have interstitial cystitis, but I am not convinced with the symptoms.

I have noticed that I get this bladder pain when I am under lots of stress(I run my own business and the insurance companies owe us a lot of money), when I don't drink enough liquids, eat spicy food, or drink too much coffee.   I also like to drink red wine and if I don't hydrate enough, I get into trouble with my bladder.    Sex also can trigger this, especially f i have these other factors along with it.

After I pee, I get this awful bladder spasm and I feel like hell.  I can't stand this pain, and I take a couple of Pyridium and have my husband write me a presciption for a urinalysis and culture.  Thank God almightly for Pyridium or I would have been dead a long time ago.   After my urine culture comes back negative, I know I have to hydrate, cut down on my coffee, occasional diet coke, my wine, and no spicy food until it clears which can be as long as 1-3 weeks.   Pyridium once a day becomes my best friend, although it helps my bladder pain, it makes me feel somewhat nauseous and gives me an occasional headache.   I always carry with me in my purse Pyridium.   I can go for a couple of years without any problems and then Wham...... back again.

I try to google my condition, but the only thing that comes up is intersitial cystitis and by reading this, I don't have this.     When I get my bladder spasms, I do have urgency and frequency, but it's only because I am scarfing bottles of water to make my bladder feel better.   My bladder feels better when it's full.

My husband says I should visit a urologist.  Even though, I am married to a doctor, I hate going to visit one.!!  I feel like nothing has been done for me in the past.   I do admit that i am a bad patient, a work-aholic, and high strung all the time.  Yes, i know that I have to take better care of myself at 47.     I love my coffee and wine and don't want to give them up.     Right now my bladder is acting up and I decided to join this patient info group to see if someone has any ideas on what I might have.     At least I had the opportunity to find out that not all bladder spasms and pain is caused by bacteria.  My mother took antibiotics all of the time thinking she had a UTI.  Most of the time she did, but now I am sure that maybe a UTI was not always the case.

I have always considered myself to be a strong and healthy women and I do not like to complain about my health like so many people do but I am interested in hearing if anyone else feels like I do.

I will be more than grateful for any feedback.

 

2

Hi I went through the same things you did through the years. Anabiotic after anabiotic even though the culture came back negative. When they would do the urine Spinout in the office It would show blood or bacteria Which is something that shouldn't be there. the doctor gave me anabiotic just to cover it. Cystitisis a type of bacteria and you can have blood in your urine.

I had to do a process of elimination.. I ate tomato-based foods almost every day. I also ate oranges limes lemons every day. Red wine I loved as well. Spicy spicy spicy foods alway!!!!!! And all of the above cause my bladder situation. 1 tablespoon of spaghetti sauce will send me into a cystitis flair.

All people suffer with it differently. I end up in bed for a couple days feeling very ill and when I urinate it's like glass coming out. And I am no baby either but it sends me flat out in bed. Actually feel like I have the flu. It's a very strange phenomenon and I hope one day it will be better recognized and not so sketchy. I do know we have to be your own doctor sometimes and food is medicine. Just like people that have different allergies think of it as an allergy. I hope this helped.

3

I can repeat both you guys word for word. Then say NO MORE GLUTEN ...Caffiene is not good,preservatives are not good, sweetners not good, but the thing that makes my bladder swell like a watermelon is gluten. Try a gluten free diet.It has brought me back to lfe. I leterally weighed 101because gluten was irritating my bladder so bad I couldnt eat. The doctors were no help, I found this out on my own. Now I am great, a little burny from i cup coffee and 1 glass of wine a day, but other than that I am so much better and do ot take any medication. To test my theory I try flour every now and then and all heck breaks loose. I feel so uncomfortable and blow up like a pregnant

woman.

4

Hi totally sounds like you have a gluten allergy for sure. It's so different for everybody and it's a process of illumination. I don't eat any pasta rice or breads very rarely if I have a half a piece of sourdough. Medicines are asset to the body too so I think food is our medicine like I said before. Do any of you stay swollen for days with pain long after the burning on urination is gone.

Also mint tea is very calming

5

I apologize for those misspelled words I should've looked. Of course I meant acid foods and A process Elimination

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Thanks Jane for your feedback, but has anyone ever told if this condition actually has a name or are we destined to be our own doctor like you said??

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Hi amy,

I will check into what you mentioned about a gluten free diet.  When my bladder gets inflammed, I feel like I bloat up like a pregnant lady as well, more than usual because I always feel bloated anyway bladder or not.   

I will certainly read more about this.  Thanks for your advice.  Take care.

 

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Good Morning/ in answer to your question:

Last summer is when things got really bad, I could not leave the house

let me know if this was the same for you

the whole situation changed, not an (occasional Bladder Problem, but full blown) and constant!!!!

that is when I went to see a UTI specialist

the PA is the one who tlked to me about it possibly being cyctitis, and that is when I looked totally in this direction!!!  Food is our culprit

think of it as allergies to our bodies

that is what it is in a nut shell ...cysitiis is inflamation ( ITIS

means inflamation)....all diseases are caused either from inflamation, or dehydration

so infmamation of the Urethra / bladder etc

we do not need a Physicial to tell us that/ sometimes they look in the direction of meds only to cure .....be aware of all you eat and keep a log

it will help you decide which foods are causing this

sometimes ( it is meds, so if you are on any medication consider tha)

Also eating alkaline foods such as asparagus and cukes brings the body to less acidity...interesting stuff right?!!!!! CHECK OUT ALKALINE FOODS

BLACK peper is a culprit too / as well as oranges / grapefruits/strawberries/ and raspberries......after taking them out of my diet , you would not believe how acidy one of the berries taste after a year...hope it was not too much INFO TMI/

Jane

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I have been reading about acidic and alkaline foods, and it seems to me I have been overdosing on ACID.   I  do believe that when my bladder gets inflammed its during the time when I am not taking very good care of myself, overworked, stressed and overdosing on stuff that I shouldn't be eating.   The other day, we went to a restaurant on a mini vacation with my husband and girls.  Long story short, I had 2 glasses of red wine and the food we ate was somewhat spicy at this asian restaurant.  In my head, I was starting to stress that maybe the spice was going to cause my bladder inflammation again, as I do not eat spicy anymore because I ruled this out as being one culprit in my bladder discomfort, but I thought to myself "maybe it won't happen this time," and BAM... wine, spicy food, and then some lovey from my hubby and I was a GONER.   I had recently gotten over an episode  about 4 months AGO, so this has been now twice in a year.    Thanks sweetie for your concern and feedback.  It's nice to know that people are out there like me. 

10

Hi Annabelle,

I was reading your post and noticed that I have the same symptoms as you. I never thought about it being from food I was eating because this began 4 months ago after I had sex with my boyfriend of over a year. I got a Pap smear, uti culture, everything and it all was negative. I'm currently seeing a urologist and he says it sounds like inflammation but we haven't begun any tests yet.

I was wondering if it went away for you?

Thanks

11

I too have experienced similar problems.  Most of the time by bladder is fine.  I do not have to urinate frequently (about 6 or 7 times a day, which includes getting up most nights once to urinate).  I have had to get once a night to urinate since an ectopic pregnancy when I saw 27.  My pain is mainly caused if I drink coffee and tea seems to be OK for me but I mainly drink Red Bush tea (decaffienated).  Sex can also trigger problems.  If I stay away from coffee, tomatoes, etc the problem goes away.  It is not a feeling of cystitis, just an uncomfortable, gritty and irritated feeling in my urethra area.  I am 52 and post menopausal.  I am taking Vagifem twice a week for atrophy and this has helped, but not cured my problems.  My flare ups are getting slightly more frequent.  You posted five months ago and I am wondering if you found any solution to your flare ups.  I am quite happy to never drink alcohol or coffee again but would like to be able to drink tea and not worry about what I eat.  Did you feel that stress was a factor in your flare ups and did relaxation help?  I would be grateful for any feedback.

 

12

Not sure if you are looking for any more responses, but if so, here is mine - your story is very similar to mine.  I will make this concise - after a myriad of tests, Emergency Room Visits, rounds with antibiotics (some of which I was unknowingly violently allergic to) - FINALLY my OB/GYN looked at me and said Jonna, you have interstitial cystitis.  One Physician assistant at an ER visit gave me a sheet on this, expalining about the acid free diet - I thought what did I have to lose?  I did it, hard as it is, and it REALLY does help - basically you have an ulcerated bladder I am guessing, that reacts to acidic foods/drinks hitting it.

I have only found relief in the followign for myself::

1. freeze dried aloe vera capsules - but only for short term (3 month) initial use.  Long term can hurt liver (found this out personally, unfortunately)

2.-The acid free diet - stay on it - hard as it is - you can find things to substitute for what you are giving up - promise!

3.  Drink LOTS of water - I mean 8 ounces every 1 1/2 hours during the day - this really does help.  You will notice flare ups if you neglect this.

One thing I have found once I found helpful web spots was that IC is not cookie-cutter among its 7 million patients in the USA(1 in 10 is male, for instance) - we all react differently with different htings setting it off.  But, the number of cases is increasing and our practitioners here are scrambling to find out how to deal with their ever-increasing patients who come in with UTI-like symptoms yet nothing but perhaps trace elements of blood in the urine, and antibiotics useless in treating this.

There is hope, help, and MANY others out there with this - even this helped me, as I felt so "alone", and had been so active in my life until this hit.

Would enjoy hearing how you are doing now.  Oh, the only other thing - wondered what your husband thinks of long term pyridium use?  We are told here in the states to not go on it more than 2 days as can cause liver and kidney issues.  Just a thought - I know it DOES help, but kindly remember, its use masks the problem, but doesn't help it go away, also like using high end pain meds.

 

Pullign for you in the states:-)

Jonna

13

Hi Jean sorry took so long to reply. The culprit are different things for different people. I think tomatoes are the biggest if not the only one for some. Red wine, strawberries, And raspberries are also high in acid. I personally can drink coffee And Tea. Absolutely no red crushed pepper. That is a huge culprit and do realize that a lot of it is crushed crushed pepper if you know what I mean. So Thai food uses a mix and is totally out of the question. Curry, Cumin , Garlic, salt, and light on the pepper seem to do the trick for me. I'm sorry that coffee is a problem for you that's really too bad, funny how that works. Do you put cream in your coffee to cut down on the acid. Also they do have acid free coffees online

I don't even want to start a relationship because obviously through the years, thinking I had UTIs it was this the sting. Do you get that rumbling down low below The pelvis, kind of a pressure pain thing before a flair? And during a flare notice how hot your urine is coming out, and it's like glass in pain. Let me know how that works for you I'm just curious. Thanks

Jane

14

Jean-

You might find IC Network a helful place to get answers you need.  I find I have to toally stay on the IC Diet (yes, there are places onlien that list this diet spelled out for you) to minimize flare-ups -if you wish to avoid drugs to deal with it.  YES, stress triggers this tremendously.  There are now 8 million women in america (and 1 million men) with soem form of interstitial cystitis - I was formally diagnosed 3 years ago after amny tests and doctors.

Wishing you well!

Jonna

15

Thank you Jonna 

i have read the IC website as you suggested.  Do you take medication for it?  I have been very depressed and feel hopeless.  I am taking an ani depressant, low dose Amiriptyline for pain and Tolterodine to try and help with the bladder spasms.  My mood is lifting a bit and the Amitriptyline seems to have helped mostly with the pain but I am still getting muscle spasm but have only just started the Tolterodine.  If I follow the diet carefully for the next three months is there a chance I can come of some of my medication.  Is IC always a progressive disease or can you reverse it slightly by being sensible in what you eat and drink?  Thank for your your support.

16

I have been left feeling very depressed and hopeless.  I am still managing to go to work as I am paying for my son to go to university and he is in his third year.  I don't want him to know I am ill and worry him.  I have been put on antidepressants to help calm me down and level me out, low dose Amitriptyline for the pain and Tolterodine for the bladder spasms that I seem to be getting.  If I follow the diet and avoid the bad triggers for me, ie coffee, tea, chocolate, tomatoes, strawberries and peppers should I get over this flare up and be able to at least drink red bush tea (decaffeinated).  Am I destined to only drink water for the rest of my life.  I am only 52 and need to try and continue working for a few more years.

17

Jean- I just sent a lengthy response that for whatever reason was sent to be moderated - I will rewite most of it again if it doesn't post today - I also am 52, liek you - you WILL make it through this - I care, and am praying for you!  I know the feelings of pain and hopelessness that go along with IC.

Take care - please keep in touch, and stay on the diet - codtor told me NO teas, not even decaf, except chamomile!  Soemthign acidic in it besides caffeine, I guess.  Keep drinkign water, 8 ounces every 1 1/2hours through every day, and as you get up at night (1-2x for me) - this is THE simplest tip I can offer that works so well for me and others - flushes out bladder.

Only known drug inUSA fda approved is called elmiron, with many side effects some women put up with, others simply cannot tolerate, such as marked hair loss.

Freeze dried aloe vera capsules worked so well for me, but you want to take those short term, like 6 months, then take a break, as long term can cause liver pain (foudn this out myself with thi pain issue in liver this year and doctor visits/bloodwork).

In time, you might be able to reduce/stop some meds, under your physician's counsel as you stay faithfully on that diet.  You shoudl be able to find it on line to print off - ic diet.

There is hope - it seems progressive but there are points of it levels off and you can live with the lesser pain.  I was at a 10 years ago, now it is more liek a 3 - I wondered if life would ever be normal again at that point back then - you WILL make it:-)

Please stay in touch okay?

Warmly, with prayers -

Jonna

18

The problem with Tea is the tannins which are irritating. But what some may not know is there's tea herbal, without any real tea in it. Mint tea is amazing for a flair, make sure when you buy herbal teas they do not say flavored. Then you're not really getting what you need. Make sure the T says real meant, or real hibiscus, tulsi T is amazing for the bladder, another name for it is holy basil. Read the boxes and make sure the ingredients do not contain lemon or any other citrus. Thanks

19

My pain has been worse today, I think it might be stress.  I don't think I will ever be able to cope with a progressive chronic illness.  I have even had to ring the Samaritans as I feel so desperate.

20

Please hang in there - you can make it.  It might NOT be progressive in your case - what you feel now might be the worst it is going to get, and may just get better from here - keep drinking water every 1 1/2 hours and see if that helps at all?  I know flare ups are awful - you can get through this. Stay on the diet if you feel up to eating.  Try getting a heating pad and lay on your side, with the heating pad on it, or in a hot bath tub. I am so sorry, but in the USA we don't have The Samaitans so not sure what they are, but it must be some sort of assistance I am hoping.

Praying for you today - yes, stress CAN make it worse, for sure.  You can get through this...

With a hug and prayers -

Jonna