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CYSTITIS WITH A NEGATIVE URINE CULTURE

Posted , 10 users are following.

annabelle195
annabelle195

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.

 

1 like, 20 replies

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  • JonnaFromNY
    JonnaFromNY annabelle195

    Posted

    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

    • jean11356
      jean11356 JonnaFromNY

      Posted

      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.

    • JonnaFromNY
      JonnaFromNY jean11356

      Posted

      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

  • joconnor
    joconnor annabelle195

    Posted

    Hi, I have had these symptoms on and off for many years. I have learned to deal with it pretty well, and feel OK most of the time. One thing that really helps in the short-term is taking 1/4 tsp of baking soda in water. Following a low-acid diet is essential to getting better.

    There is a blog post I read that helped me a lot. I don't know if it's OK to post a link here, but the name of the article is "Bladder Spasm and UTI Symptoms Not Caused by Bacteria: What Worked for Me." You could probably find it by a search if you are interested.

    Since this post is 7 months old, I hope you are feeling better by now.

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