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  1. #1
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    Is Cystitis the same as Interstitial Cystitis??

    Help!!!!

    Question? Is Cystitis the same thing as Interstitial Cystitis????? I for one do not think so...but I would love your thoughts and viewpoints.

    I had "honeymoon" cystitis a couple times about 10 years ago. Very minor inconvenience. Never even went to the gyn, she just called me in a script.

    My husband and I used a diaphram for 10 years as well, and my doc back then told me using a diaphram can cause a little cystitis, as the penis can hit against the rim of the diaphram and cause some irritation.

    Haven't had any problems in 10 years, until now. Now I have severe Interstitial Cystitis...definately not the same as 'cystitis'.

    How I got Interstitial Cystitis is very situational. To make a long story short, an RN at a local hospital here in town forcibly removed my foley catheter without deflating the balloon and while I was standing up next to my hospital bed. I had just had a partial abdominal hysterectomy the day before and she came into my room and did this to me. Needless to say, my whole life changed that day. She just reached up under my nightgown and pulled it out of me. It fell to the floor in a pool of blood. I squirted arterial blood down my legs and across the room, couldn't pee on my own, was re-cathed (by another nurse) and the next day when I was told I could go home after they remove my foley (again) and only after I could pee on my own. The nurse who removed my foley on the third day, did it the correct way. I didn't even realize that the first nurse botched up the whole removal of the foley, until the nurse on day 3 did it right and showed me how it's done. I looked at my husband and could only cry. I've had so much pain.

    Anyway, I've been through a year and a half of just plain pain and anguish.

    I guess what my question is, those little bouts of honeymoom cystitis is not the same as what I'm dealing with now, right? I truly feel that the trauma from the botched catheter caused my IC. I've had no other symptoms of IC, ever. Oh, when she forcibly removed the foley, my urethra was torn, scarred, infected and inflamed. Now I'm dealing with IC, vulvadynia, Pelvic Floor Dys. (nerve damage for that foley coming through my pelvic floor)

    Any help and advise you can give me would be very much appreciated.

    Thanks


    Cindy

  2. #2
    IC Friend tbokay's Avatar
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    I was wondering the same thing last week. My new uro/gyn's nurse said that I may not have had a true uti - it may be cystitis. What is the difference between cystitis and interstitial cystitis?
    Tara (tbokay)

    Age almost 33! (4/27)
    Single - no kids, but 1 cat, Bianca QT
    Diagnosed mild IC in Oct 2004 - but on 11/7/05 told I DO NOT have IC (even though 2 other doctors agree that I DO have IC)
    2nd cystoscopy 10/6/06 confirms I DO have IC! 3 out of 4 urologists agree ... It's not in my head!

    9/11/06 Urodynamic results - bladder wont hold more than 200cc without causing retention due to lack of strength in bladder to start urine flow.
    5/3/06 had IVP that revealed "mild swelling" of right kidney and ureter due to "recurrent infections or urine backup into kidney"
    4/13/07 - started RMSO once a week for six weeks - ON HOLD DUE TO INFECTION!!! Scheduled to start again 5/4/07.

    Past meds:
    Elmiron - severe nausea
    Prosed - triggers migraines
    Fentanyl - 3 day pain patch - lasted 36 hrs before I had to remove due to adverse reaction
    Vicodin - stopped working
    Tramadol - caused urine retention
    Fioricet - caused urine retention
    Nitrofurantoin (antibiotic for 3 months)
    Celebrex 200 mg
    Pyridium 200mg (for 30 days supply)

  3. #3
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    I forgot to add this as well

    I forgot to tell you that after the botched up cath removal, I had 6 UTI's (confirmed), with no growth. I had 6 in a row which were not helped with antibiotics. Finally, after the docs discovered I had an inflamed, infected, scarred urethra and my bladder was not emptying due to these problems, I feel that all of that chronic infection caused my IC.

    What do you think?

    Cindy

  4. #4
    IC Friend K9wife's Avatar
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    Cystitis is the medical word for inflammation of the bladder (itis= swelling or inflammation and cyst= bladder. TONS of people have ordinary cystitis, but IC is a different ball game.

  5. #5
    Forum Manager ICNDonna's Avatar
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    They are not the same

    What we usually call cystitis is a urinary tract infection.

    Interstitial cystitis is a disease with pain and NO infection. An interstitial cystitis (IC) patient can get an infection, and many of us do. But IC is not usually even considered unless there are symptoms without infection being present.

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  6. #6
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    Just a question for you

    When all this happened to you at the hospital did you tell anyone what the first nurse had done to you. From what I am understanding from your story is that you wouldn't have these problems if that nurse hadn't of taken the cath from you incorrectly. So would that be some sort of malpractice (can nurses get accused of malpractice?). The reason why I am asking is cause as we all know it is not cheap to have IC. There is the elmiron most of us take along w/ the anti-depressants, pain meds, pelvic floor therapy, bladder instilllations, etc. If this nurse was the cause all your IC then I would of surely held the hospital liable. I was just curious of how you handle the situation, because I surely would of gotten pretty hostile with those people....IC is a very MISERABLE illness.

  7. #7
    Guest emilyrose197377's Avatar
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    Cindy , I am so sorry that kind of trauma caused your Ic. you are in my thoughts and prayers.




    Kim

  8. #8
    ICN Member SandyRN's Avatar
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    Oh my LORD I can NOT believe what was done to you! I used to work on a GYN surgical unit and ANY nurse that graduated nursing school should know how to remove a catheter properly as we learn it in SCHOOL! If you did not report this nurse, you still can, and you should. Yes nurses can be charged with malpractice!! Many of us carry our own insurance policies, and many hospitals carry insurance for their nurses.

    There is absolutely NO excuse for this. Never, ever have I seen or taken a foley out with a person standing, first of all. Next, it is just common sense for the nurse to deflate the balloon....it's mind boggling to me actually, that this could have happened.

    I keep thinking this must have been a student that was (inappropriately) allowed to come take it out because it's hard for me to imagine a RN doing this, but I guess these things happen

    So, like I said, if she wasn't reported by you back then, you can still do it. She should have charted exactly what happened, and so should the corworkers that actually took care of you after it happened. Something should be done to her...not out of spite, but to keep it from happening to another patient, so she learns from her mistake, and so you get the recognition you deserve for your trouble.

    IC is so totally different than just cystitis, and from what you say it sounds more like you have urethral dysfunction (obviously) from what happened. you also said you don't and haven't ever had any symptoms of IC. Have you had a cystoscopy with hydrodystention? They should have done this with you under general anesthesia in an OR (usually where it happens), so they can look in your bladder. If they haven't done this then you don't yet have a diagnosis of IC.

    I'm confused about something else as well. When you say you had confirmed UTI's with no growth do you mean there was no bacteria in your urine? Thats not a UTI.

    I hope you don't have IC as you have enough problems to deal with just with the trauma to your urethra.

    Please let us know how you're doing and please follow up on that botched cath removal if you haven't already.

    Sandy

    ps...who told you it was arterial blood you were leaking? The reason I ask is because if an artery was ripped it seems you would have had to have surgery (at least stitches) to fix it. All of this sounds wrong to me and like you have been misled, severely.
    Last edited by SandyRN; 07-20-2005 at 04:36 AM.

  9. #9
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    Thanks for your imput

    Sandy-

    Firstly, thank you for your expertise. I do have IC...confirmed through cysto/hydro under anethesia. I saw the pictures. Not pretty. It's been almost 17 months since the injury at the hospital.

    Yes, I did report this nurse and yes, the hospital has acknowledged negligence. Her explanation for this......"she was in a hurry".

    Anyway, yes, I've had all the 'slated' treatments for my severe IC. My doctor is strongly recommending Interstim. I haven't decided if I want to go that route at this time. My chief complaints right now are pain, frequency and bladder spasms.

    So, my question to you is. If a UA is indicated as positive, what exactly does that mean? And also, about the blood after the injury, I just assumed it was arterial blood. It was a very strange color, not like menstural blood. When my uro told me my urethra was scarred, and another doc told me I had a 2 degree urethral tear, I assumed it was from that. What else could the blood be from? I had no uterus...it was removed the day before.

    Thanks for your advise.

    Cindy

  10. #10
    ICN Member SandyRN's Avatar
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    Hi sweetie.

    She was in a hurry?? I hope they fired her and suspended her license!!!! I'm sorry you have the IC diagnosis. I just didn't quite understand if you did or didnt from your post. (I'm a lil bit scattered)

    I can relate with the pain, frequency, and especially the spasms!!! I posted something somewhere about the pain of those spasms...they ARE the devil sometimes aren't they???

    A positive UA, as far as I know and as far as my uro tells me, means there is an active infection present in the urine.

    As for the blood, there are urethral arteries, but if they had ruptured you would have had to have some sort of emergency surgical repair to stop the bleeding. The strange color probably looked odd to you because menstrual blood is often darkish, brownish, etc, because it's cast off old endometrial cells, etc. Fresh blood from an injury can look bright red. I'm guessing the blood was from the trauma to your urethra. Also, you can, and usually do spot after a hysterectomy. It all sounds horrid and I cant believe still that you had to go through that.

    I know it sounds nuts, but in some respects you are lucky. It could have caused a lot more damage to your urethra then it did and left it permanently unusable. Knowing THAT made me ALWAYS remember to deflate that balloon.

    If I can do anything for you please email me, pm me, or just write here.

    Take care, Sandy

  11. #11
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    Nope, not fired

    Sandy,

    No, she was not fired. Actually, still working at the hospital on the GYN floor with all the new moms. Scarry, isn't it.

    She was put on probation and I was told she was "counseled". Not sure what that means.

    Yes, this is a dreaded condition. So, what is your story, if you don't mind sharing?

    Cindy

  12. #12
    ICN Member SandyRN's Avatar
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    It IS scary....there's a lot she could screw up with the new moms too. Counseled to me isn't enough for something that stupid but I guess I dont make the rules...maybe I should huh?

    Well, my story is all over the board but to sum it up:

    For several years I was having undiagnosed pelvic pain and slowly the frequency, spasms, etc started. Out of the blue I wound up with a UTI around Feb of 2004. The day after I felt the symptoms (burning, urethral spasms, sleeping on the bathroom floor for the dribbles) I had a 103 degree temp and wound up in the ER then admitted for several days with a severe UTI/pylonephritis and they thought I'd passed some stones. It hurt...enough for a morphine drip. This happened several more times with hospital admissions, and verified stones. My uro waited until my infections (E.Coli infections) were gone and did a hydro/cysto on me and found the IC. I am one of those weird people that had positive UTI's. He told me he thinks my retention caused the infections, and the stones, well who knows...nobody ever really told me why I got them so badly.

    So since then I've taken elmiron, and my hair fell out in clumps and it was too expensive, even with my insurance....I take oxycontin and norco for pain along with soma (a muscle relaxer) to help with the spasms, hydroxyzine, pyridium all day every day, urised as needed, and a host of other meds as I have other problems like fibromyalgia, chronic fatigue, crohns disease, and ibs, and my thyroid levels are low if I dont take meds....

    At this point there is a mass on my left ovary (wrote about that somewhere too) and having tons of bladder spasms, frequency...and some on and off kidney pain and hoping I've not got a stone up there.

    Whew, that's it in a nutshell I think....I didnt want to bore you much more lol. I was also on this board before as YankeeCandle and spent hours and hours here when I was first diagnosed.

    Like I said, feel free to ask me anything, any time. I dont pretend to be an expert on this, or anything else for that matter but maybe I can help someone somewhere along the way. I went on medical leave from a great GREAT job in 2001 and haven't returned but I'd like to go back.

    Sandy

  13. #13
    ICN Member Katrina's Avatar
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    I am so sorry that happened to you.that sounds so scary....and they are not the same...many of us (including me) are misdiagnosed with normal cystitis before we finally get diagnosed correctly. As Donna said Cystitis is usually what we call a uti...there is chronic cystitis which many women go through for a period of time in their life when their bodies are developing and they get a large amount of infections.

    I also want to let you know that abdomenal surgeries often flare IC...with the added tramma you went through it doesn't surprise me at all that your symptoms began then. With all you infections besides I suspect your bladder has been through plenty.
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