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  • lutznancy
    replied
    IC Friend




    Join Date: Apr 2007
    Location: Florida near Tampa
    Posts: 7 I have a new confusion now.....the urologist that I went to who gave me my diagnosis was so sure that I had no UTI when I went into him last Tuesday. He said that he would take a sample by catherization anyway, but he was sure it would come back negative as that was my history. Well, no it didn't.....his nurse called and said I do indeed have a UTI. And after a couple of the pills, I'm feeling better already. This is the pattern that was occuring before I went to see him. I would get UTI symptoms, bo to my primary care doctor, get a test which would come back with a very small number of bacteria in the urine, they would prescribe antibiotics and it would clear up only to return in 2 to 3 months, after which I would take more antibiotics. I went to the urologist because I was having too many UTIs. The urologist, after reading the records from the primary care doc said I really never had UTIs because the bacteria count in the cultures were only 1/10 of what they would be for a UTI diagnosis, and during my initial visit, the urologist seemed to have the IC diagnosis even before he saw me. He did not listen carefully to me when I would try to answer his questions, and would cut me off in mid-sentence with his own answers. So, I always questioned his diagnosis. Then he did a cystoscopy under anesthesia and was quite worried about my lower bladder capacity. The thing is, I've not read the report about what he actually saw in my bladder and last Tuesday when I went in to discuss alternative treatments, he announces that he saw some "bleeding" in one part. This is news to me because he never mentioned this before! I did go for a second opinion and that urologist said I had a 50-50 chance of having IC. I've never had real pain, but just a very uncomfortable feeling of urgency and pressure. So, now I'm totally confused.

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  • Kathy in Canada
    replied
    Konstantina

    Hi,

    Like you I got fed up waiting months for a diagnosis in Ontario. You wait months to see a specialist and then find out they are not very knowledgeable about IC diagnosis or treatment. Then you wait for ages to see someone else.

    I couldn't wait any longer. I found out who was good to go see in New York City. The doctor did do an in-office cystoscopy but it didn't hurt. His assistant put lidocaine jelly in my urethra awhile before the cystoscopy.

    The doctor used the potassium sensitivity test to diagnose my IC (along with my symptoms and history). I had a very positive reaction to the potassium sensitivity test. I was pretty sure that would be the case.

    If you get can come up with the money New York City is not far away by plane. I got there in a bit over an hour.

    Kathy

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  • Zygala87
    replied
    Hello. I believe one will find many more Males in a Urologist waiting room due to prostate problems then the desire for vigra. They can get Vigra from their Family Doctor. Prostrate Cancer is becoming more and more common as our population becomes older. Ziggy

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  • Konstantina
    replied
    Hi all,

    Im so confused. I had my appt with my Gyno. She asked me why the Uro hadnt sent her the Cysto results, and I told her what happend with him not being able to inser the scope. She said she wasnt suprised since I have vulvodynia my pelvic muscles tend to spasam.

    She then goes on to say the most Uro's dont like to treat IC patients, and not to bother having the Cysto. She say all your symptoms point to IC, and then she gives me a scrip for Elmiron.

    Im so lost...

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  • jen74
    replied
    WHen I had an in office cystoscopy, it was the most painful thing I ever went through. It was nothing like having a cath put in. I had a cath put in about a week ago by my a nurse just to check my post void residual and it was much less painful that the cystoscopy.

    I think it depends on who is doing it honestly. I had a real jerk of a urologist who did my first cystoscopy. He was the one who told me that IC was not real and that only women over 45 get this type of problem. Talk about not being knowledgable at all. Well, needless to say, I never went back again!
    The last cystoscopy I had, I was sedated. It was soooo much better. You can insist on being sedated, infact there is no reason why you should not be. They gave me a twilight like sedation and I did not feel a thing. I mean I have went through alot of procedures like EGDs and also a colonoscopy and am always sedated. I think the same rule should apply for doing a cystoscopy.

    I am sure that it hurt you when he tried to put the scope in because you are already in pain from the IC. It does not mean you have a narrowed urethra. Mine hurt like hell when that jerk uro did mine, and he did not even stop when I cried out in pain, he just shoved it in. For your own peice of mind, I would ask to be sedated. Why go through any more pain if you dont have to.
    Jen

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  • Konstantina
    replied
    Hi Cia,

    Im going to ask my gyno when I see her tomorrow. As for my Uro he's odd. Like when I went in to pick up my package that I need to when I go to hospital to have the cysto under general. I noticed that under the procedure section there was another word as well as cystoscopy I asked the secretary what it is, and she like they going to remove the stones. I was like what stones I dont know any stones that I was told of. So she calls the Uro to come take a look at the forms, he doesnt even say Hi to me, all he says is "its just a cysto". I was thinking thats odd that he added a procedure to my paper work that i did not to be done. I know humans can make errors but this seemed like a careless one.

    Also I think he is mad that he could do the cysto under local. When I had an appt with my family DR she already knew he couldnt do it, so he totally called her and told her. During the cysto with local he was acting very annoyned that he couldnt get it done. I told my family DR i noticed he seemed very annoyed that he couldnt get it done. And she like well hes does them all the time. I feel like they are acting like im such a burden, I dont know why he couldnt get it in, I dont know why my muscles were apparently tightning, or maybe my urethra is very small as Donna said. Only now do I realize how arrogant and anal some DR's can be.

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  • cia
    replied
    can they give you anything at all

    Hi Tina,
    I feel so bad that you are going through this. Is there any way that the doctor can give you urised or pyridium or something to slow down the spasms and make you more comfortable. I know nothing about vulvodynia so I don't know about medication interactions, but I would think that a knowledgeable doctor could at least have you try some different meds while you wait for the procedure, maybe your gyno could help if your uro is unresponsive.
    Cia

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  • Konstantina
    replied
    Hi all,

    Im so upset. I was suppose to have my cysto today under general, but I got the flu so they had to cancel it. The next opening is for Apr 17...I have the worst luck!!! Im hoping for another cancelation the odds of that are beyond slim. Im getting to the point where I dont even care if I get a diagnosis, I already have vulvodynia and my gyno said all my symptoms sound like IC. Im taking Lyrica which hasnt helped my V-pain or the urination and bladder pain. Dont know what to do!! All I keep thinking is why me!

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  • Konstantina
    replied
    Hi Donna,

    Thanks for the info on the filling up the bladder with water I was so confused about that. Ya it is record time for my cysto under general. It was going to be for Apr 4, but after they booked me they called me back with a cancelation appt so that worked out. Now I play the waiting game again. Thanks all for the responses.

    Tina

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  • starwoman
    replied
    Hi I've just joined this site I have had a cystocscopy done last year and they put some freezing gel on my vagina and inserted the camera and it didn't hurt at all. I actually saw the flair up inside my bladder, so I know it's real. I will be seeing my urologist in April. I'm looking for ways I can control this, I'm not talking any particular meds for this, all I have been given so far is antibiotics which of course doesn't do much and probably gives me more problems. If you have any advice, please feel free to leave me a message

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  • ICNDonna
    replied
    They do put water in the bladder to view it during a cystoscopy. It isn't distending the bladder, however. When the bladder is empty, it collapses much like a balloon without air, so in order to be able to see the bladder lining at all, they really have to put in some water.

    If they are able to work you in to have the cysto under a general in two weeks, that is pretty much record time even in the US. And it's important to have a doctor who will not intentionally cause you severe pain.

    The difficulty in inserting the scope could be because you unconsciously tightened up in response to pain, or it could be that you have a tiny urethra.

    Hopefully you'll have some answers after the cystoscopy.

    Warm hugs,
    Donna

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  • Konstantina
    replied
    I dont know what to do, Im at my wits end. If I ask for referral to another URO, I know that wait time is going to be at least 3mths. I live in Canada, and our system is so crap when you need to see a specialist. Im still having pain in my urethra from the sturggle, but no burning when peeing. Thanks for listening.

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  • izazen
    replied
    I had an office cysto last week. He filled my bladder with 550 cc's of water, inserted a long tube with a camera and looked around for about 5 minutes or a little more. I had taken a tranquilizer on my own before I left the house so all he did was to put some salve on the urethral opening.

    The nurse gave me an antibiotic when I first went, I took off my pants and then walked into the procedure room. ( I told them I had taken a trank on my own and showed him the bottle so I guess he thought that was all I needed.)

    I had no problems until he was almost done and had filled my bladder to as much as it would hold. As soon as I expressed the slightest discomfort he immediately cathed out the water.

    He did say that -at the very beginning, after he took a first look at my urethra, that he would use a smaller instrument instead to gain entry - after that all went well. Sorry you had a bad experience. Are you sure you want to go back to that same doctor?

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  • Konstantina
    replied
    Hi All,

    Today I was suppose to have my cystoscopy. I had called his office last week, and asked to speak with my DR and the receptionist said Id have to make an appt. So I figured whatever I'll just go ahead with the cysto, and go from there.

    So I arrive today at his office, and the nurse starts to prep me. I ask if he's going to be doing a hyrdo, and she responds he'll be "filling your bladder with water so he can have a better look". That confused me as I thought what are they going to give me a hyrdo only with local??? So I thought to myself let him do the procedure then I'll ask some question. Has anyone had them fill your bladder with water with just local?

    So DR comes in, and attempts to insert the scope, and it killed. He tells me to relax as I must to tensing my muscles and thats why he is getting all this resistance. He trys again and the pain is unbearable, and hes still struggling to get it in. At that point he says "forget it, you cant relax, and I dont want to traumatize you by forcing it in". He said he'll have to put my under general. He seem very annoyed by all of this. He wasnt rude, but I thought he couldve been a bit more easy going about the whole thing. I dont think I was clinching my muscles, and I was taking deep breath, and I wasnt nervous or anything. As I was leaving the nurse said I probably have narrowing of my urethra, but we'll have to see when he can actually perform the cysto. I didnt get a chance to ask the DR any question, and I was pretty upset because I had been waiting 4mths just to see a URO, and I had to wait 11/2 to just get the appt for the cysto with local. Now I have to wait 2 more weeks to have the cysto done under general. The health system in Canada is the worst!!!

    Has anyone had this problem of them not being able to get the scope in? What are your thoughts my situation.

    Thanks.

    Leave a comment:


  • L. Thomas
    replied
    You might be more comfortable with a urogynecologist. All you see in my urogyn's office is women.

    I was diagnosed when I completed a "bother scale" where you rate your symptoms. I had a score of 23 out of 25. My urogyn says he sees no need to do a lot of expensive testing when symptoms are as good an indicator of IC. (this is his latest research project). After 6 weeks of instills I took the bother scale again and my score was 0 out of 25.

    I had a cysto in 2002 before onset of IC that showed nothing. I had another one in 2006, after I had been diagnosed and it showed mild IC. Just as the bother scale and interview showed.

    I think dsicomfort of the cysto probably depends on the severity of the IC. I did not have any discomfort with the cysto. My urogyn does use lidocaine before he inserts the catheter. But the catheter is a 22fr.

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