Discussions By Condition: Urinary conditions

Need info on IC...

Posted In: Urinary conditions 6 Replies
  • Posted By: Anonymous
  • September 3, 2007
  • 11:00 PM

Okay well some of you may remember me from my MANY posts on here, for those that don’t I’ll try to sum it all up as quick as I can…

A little over a year ago I was presenting symptoms of an UTI, frequent urination, burning with urination etc. I saw a NP who blew it off. Following month same NP gave me a three day antibiotic and brushed me off. Another month later I was in urgent care. Finally got to see an Ob/Gyn, mind you this entire time they were trying to blow it off as an STD even though the tests constantly came back negative. So on it went, Ob tried to obtain an endometrial biopsy but was unsuccessful and sent me to a gastro doctor. In the meantime I found a new Ob/Gyn. Gastro doctor sent me for an EGD and Colonoscopy. Results were GERD and a small hiatial (sp?) hernia, neither of which explained my symptoms. Went to new Ob/Gyn who wanted to perform laparoscopy. Results are confusing… first he said I did have endometriosis, then he said I didn’t and lastly he said I did but he burned it out… no straight answer there. Same doctor also mentioned hydrosplinx of one tube which was also adhered to my uterus (later doctor said it wasn’t, as well as it wasn’t blocked off as said by other doctor… again no straight answer). At that point I was sent to a fertility doctor, who said I really didn’t have to be there, given my history and the complaint I should be seeing a urologist. FINALLY someone that listened!!
Seen the urologist last week, five minutes after seeing him he said my diagnosis was Interstitial Cytitis (IC), which is something I actually asked doctors about at one time, but was pretty much laughed at by “what I found online”.

The urologist has me scheduled to have a hydro-detention or something of that nature, which his description of has me scared to death. Has anyone here had this performed? The doctor said they would fill my bladder with water beyond it’s normal capacity until it stretches and “cracks”:eek: . He also said I would probably be sore for at least two weeks etc. Everything he has said has me terrified to begin with and it’s not until September 11th. In the meantime I’m also do for the “Red Monster” to start three days before hand. Is that something I have to worry about… I mean, will they still do it or will I have to reschedule? I hate knowing I have to wait a week when I just want it done and over with, but now I’m just as scared that I’ll have to reschedule for god knows when.

HELP?!?

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6 Replies:

  • Juliet, I hope U see this in time. I'm 25yrs old & I had the hydro-detention thing done in march of this year. Do NOT worry about it cz it's really not that bad (& I'm a hypochondriac!). I was put to sleep for mine, the actual procedure took like 20mins tops. I felt fine after I woke up. The only thing is that it hurt to pee for 2 days. That's it!! I honestly don't kno why your dr said u will hurt for 2weeks cz it's not true! Mu dr never even said tht to me. My bladder didn't even hurt from the procedure, & my dr said this procedure can actually relieve symptoms for a couple months or more for some people! It didn't relieve any symptoms for me, but I guess it's possible. As for having your "monthly friend" during the procedure, I didn't hv to worry bout tht cz I don't get my period (I've been on depo birth control shot for yrs). I would think it's ok to hv your period & just wear a tampon cz they go thru your "pee hole" (think it's called urethra?) anyways. I was officially diagnosed with IC after the procedure. Dr put me on Elmiron - I take 6 pills a day. I hate takn pills so tht sucks & I'll hv to take Elmiron for probly at least 3yrs. Elmiron is the only med FDA apprvd in USA to actually heal IC (which is damaged lining in the bladder). It hasn't helped my symptoms much yet. I'm tryn some of the "gotta go" meds right now to see if they'll help me not hv to pee so much at night. If none of these work then the next option is to get a pacemaker for my bladder. You can also hv the Elmiron med placed into your bladder thru a catheter instead of takn pills. U can eithr do the catheter yourself (dr wll show u how) or hv your dr do it in the dr office (u wld be awake for this). The thought of hving a catheter while awake freaks me out so I won't do it, but it can speed up healing since the med is placed directly into your bladder. I hope all this info helps you & calms your nerves about your upcoming procedure. I'm glad that you finally found out tht u hv IC!! I was givn the run-around for yrs also - even from my Mom! My Mom said I didn't hv a prob, she thought it was just frm getting older. I thought I was going crazy!! Good luck with your procedure!
    trixxay 4 Replies
    • September 9, 2007
    • 07:55 PM
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  • Thanks for your opinion. At least I can feel a bit more at ease about getting it done, even though I'm still a bit leery. Had a colonoscopy done several months ago and the dr didn't tell me what to expect afterwards... boy did that scare the crap out of me. Thought I was having a heart attack or something.I spoke to someone at the dr's the other day about the "monthly friend" and she said the same thing, to wear a tampon. Only problem with that is my period has been getting lighter and lighter for this past year and I really don't think I can use one... at least not with the hopes of removing it if you know what I mean. (sry TMI).Seems like I had one problem a year ago and now I all of a sudden have pee problems, period problems, digestive problems and so on. Don't know what's REALLY going on, but wish it would cut it out already. lol.Also, you mentioned Elmiron. The dr gave me that and Sanctura. Haven't started taking either one yet because I was waiting until this procedure could be done when I found out one of the above meds (can't remember which one) is a mild blood thinner. Anyway... has the Elmiron seemed to help you any? Like you, I'm NOT looking forward to having to take five pills a day, but the way I've been feeling these past several months, I'm willing to try anything. Just wish I knew if the pills were a just for now type of thing, or a forever thing because I was under the impression that there is no cure or fix for IC, only thing's which make it tolerable. Who knows... these things seem to change every week.Thanks again for the info... much appreciated!!
    Anonymous 42789 Replies
    • September 9, 2007
    • 08:59 PM
    • 0
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  • Juliet -Elmiron doesn't seem to hv helped much so far. I don't get up to pee in the middle of the night quite as much as I used to....not sure if this is cz of the Elmiron or if I'm just "holding it" longer? I'll hv to look into the Sanctura - hvnt heard of it before. I was under the impresion also that IC can't be fixed, but then the dr said I would only hv to be on it for like 3yrs & the bladder lining should be heald. I was confused by the diff info she had given, so maybe I mistook wht she sd about it being heald aftr 3yrs. I know she sd I would probly only hv to take it for 3yrs. So I dnt kno!U could ask your dr if u can try some of the "gotta go" meds - ex, ditropan xl, vesicare. They might help your symptons now while the you're waitn for the Elmiron or Sanctura to kick in. If the "gotta go" meds don't work for me thn my dr wants to talk about getting a pacemaker for my bladder. I haven't heard much about the pacemaker - like if it's actually working for people! I work at a mail order pharmacy & I talkd to this lady a few months ago l she was takn Elmiron. I startd talkn to her about IC & she has a bladder pacemaker - she sd it doesn't do anything for her. Everyone's diff so who knows if I'll hv the same results or not. But I definately gonna do some research before I decide to get it!!Well, I hope your procedure went alright. Did u get to see the pics the dr took of the inside of your bladder? I have my pics - VERY wierd! Somethng I've been wondering about - I think it's kind of odd that urologists are diagnosing people as having IC so quickly. I was pretty much diagnosed the second I walkd into the dr office! Before any tests or anything. I know IC is a pretty new diagnosis, not a lot of people even kno about yet which is why we've been misdiagnosed & brushed off so much. I wonder if the symptoms for IC are that recognizable that dr's hear our symptoms & immediately are like "that's gotta be IC!" -- or if they're diagnosing everyone eithr cz it's new (ne time a new diagnosis comes out then it's like EVERYBODY has it!) or because no one really knows about it or pays attention to it that drs thnk if a lot of people are diagnosed with it then others will take notice & pay more attention to IC & maybe the studies that are being done on it & stuff (like the more people diagnosed with IC, the more publicity IC gets). Do u see what I mean? Maybe I'm just being wierd. I havnt really talkd in length to anyone else that has IC so I haven't hd a chance to bring up this idea to anyone else. Let me kno wht u think.
    trixxay 4 Replies
    • September 12, 2007
    • 02:50 AM
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  • You make some good points about doctors giving the IC diagnosis. Mine went the same as yours, about five minutes after the doctor met me. I did find that all the info I read about IC mentioned a screening form they had. I remember my doc having me fill out a questioner while I was there, which I'm assuming is what I've read about because it was right after I filled it out that he game back in the room and said that I had it (IC) based on that and the fact that I gave a pee sample and there was trace blood in it (is just about every time).I started all the meds yesterday, so I'll let you know how it goes. Right now they've got me on the two for IC, an anti-biotic and pain killer. Thank god two of them I won't have to take anymore after a few more days.The doc also mentioned the pee pace maker to me, said he has given it to a few of his patients, but can't really say how it works.Anyway... the procedure went well I guess, but boy am I paying for it BIG TIME!! I've never hurt so bad and let me tell ya... I've hurt pretty bad before. My throat started hurting real bad last night, several hours after. Today I feel like somebody beat me in the rib cage with a baseball bat. Actually was concerned about it because I was hurting everywhere except where I was expecting to hurt. Hurts a lot after I pee, but my ribs, neck and throat are killing me. Hubby called drs office to make sure it was okay, they said it was nothing to worry about, my throat was probably sore from the tube they put down my throat.THAT ticks me off though. I asked if there were going to be any surprises after the procedure and was told no, just some pain from my bladder and that should be it. I feel like I've been hit by a car and didn't necessarily survive. Then again, they said I talked to the doctor, which I don't remember. They told my husband that I will likely forget much it from the meds they gave me. But makes no sense... why can I remember every little detail of being in there, but not once before I was knocked out do I remember seeing the doctor, let alone talking to him?!?I don't know... but I've made a decision that I'm not getting anymore procedures done. I'm sick of never being talked to by anyone. They may or may not talk to my husband, but my mother usually comes along and they talk to her. She hears what she wants, so don't trust that and they never talk to the patient, cuz THAT would make too much sense. In the meantime they treat me like I'm 4 and don't talk to me at all and when they claim to talk to me its when I'm under meds... don't make a lot of sense now does it?!?Anyway... thanks for the info. I'll keep this posted as to how the meds are going. Hopefully something improves because I would hate to know I'm going through all this for no reason.Take care!!
    Anonymous 42789 Replies
    • September 13, 2007
    • 01:05 AM
    • 0
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  • I almost forgot to mention this... you asked about my pictures. There were pictures on the table next to my bed when I woke up, but they were partially covered with papers. I asked the nurse if they were mine and she said yes, but at no time did anyone come in and talk to me about them, show them to me or give me any copies.When hubby was helping me get dressed to leave I walked over and moved the stuff off of them and there appeared to be two sets of four, both looked pretty much the same. The only thing I noticed was that out of the four pics that were on one sheet, was that two of the four had red spots all over and the other two didn't. The other set of four looked the exact same to me and I figured it was just copies. I have a follow-up appointment on October 8th and plan on asking for copies of everything then, but does the red spots ring any bells with anyone? Just thought it was weird because I've been getting red spots on my skin since all my problems started. They look like freckles, but upon looking closer at them, they're more the color of blood and almost look like I've been stuck with a needle here and there. Spots on my bladder looked the same to me, only larger... Like I said though, nobody talked to me about anything, so I'm not sure what the pictures were supposed to be of. Did you have this severe chest and throat pain? I'm still wondering why they stuck a tube down my throat to look in my bladder as they didn't bother mentioning it to me prior to actually doing the procedure. Anyway... still know nothing and hurt all over. Anything you could offer as to what the red spots might be would be greatly appreciated.Thanks again!
    Anonymous 42789 Replies
    • September 13, 2007
    • 03:25 PM
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  • That sounds like IC with the red spots you are describing on your bladder. Those are probably something called pinpoint hemorrhages, which are hallmark in IC. Look up some information on IC and look up the pinpoint hemorrhages, there are pictures on the internet of those on the bladder. Ultimately, see what your doctor says at the followup as he was the one who performed the cystoscopy. I hope you are feeling well!
    papillon22 16 Replies
    • November 10, 2007
    • 00:49 AM
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