Interstitial Cystitis

[BeccaT]

I went to see a doctor because I had some abdominal pain. They sent me to a IC specialty center. I answered 25 questions on a piece of paper. They took a urine sample and told me I have IC That same day they called me at my home and said my urine sample came back positive for a UTI and they sent me medication.
I did the food treatment, there personal menu, of eating nothing.
I went back in for the 5th time and they said they were going to start this Cocktail treatment and I needed to start my medication. Which was 3 pills a day. Elmiron Elavil Atarax. I never started the pill treatment and I asked the nurse about the cocktail I told her I wasn't positively sure I had IC She said she was going to make the cocktail up just in case the Dr wanted to do it and I said wait I said I don't want it. She made it anyway. I went back to see the Dr. and I told him I'm not really sure the diagnosis is right. He did a series of pressure testing. As in he pushed on my stomach by my pelvic region and then also pushed inside on my bladder and I came up off the table. He stepped back and said that My dear is a Pain and I said No Dr. I almost peed on you so I jerked back. I had no pain whatsoever I felt like I had to pee. But hypothetically speaking if someone sqeazes your bladder wouldn't any normal healthy person feel an urgency to pee????????
Anyway I said I didn't want the cocktail and he kept prosisting. So anyway he did the cocktail and told me to hold it for an hour after I left. I left held it for an hour then I went pee. I felt this almost like Air release and then I had this really annoying pressure on my urethra... a couple hours later I started to bleed. I bled for two days. I called them and they said that it was a freak accident my bleeding and I needed to come back in for another treatment.
I'm leery because I went in feeling great and came out with that annoying pressure on my urethra and then I bled for two days.

Back history: I'm 28 years old with 3 boys, 8,5,4. I started getting these weird urethra annoying pressure feeling thing after my last child. I was treated for UTI's and a major kidney infection. I reviewed all my lab test from the last 4 years and all my UTI's are really UTI's and my kidney infection was real. I can prove that.

Is it possible I don't have IC and was falsely diagnosed or is what I'm experiencing normal for patients?? Did anyone else bleed??? Had a long history of accurately diagnosed uti's????

My problem is I don't have any pain. I saw the women in the doctors office and they were in pain.... The only pressure not pain I get is when someone squeezes my bladder.... Is there a way to prove beyond a shadow of a doubt I have or don't have this....?

I asked the Dr. the one that gave me the cocktail that I wanted proof... because he really didn't test me... No blood work nothing... he just had me answer questions with symptoms of a UTI.... he did some kind of pressure test.... took my urine and said other then the UTI I am healthy.... So.. where is the proof?????

I'd appreciate some help please....

[madjen66]

I'm sorry you had to go through all that testing!! How upsetting that is.
For starters I had UTI's for nine and a half years, I went from one specialist to another, one telling me it was because I was having far too much sex, that wasn't the case with me, maybe twice a week back then, this started after giving birth to my first child when I was 24, (1991) Then after going to see a Urologist he spotted a tiny hole in my bladder the size of a tip of a sharp pencil, no worry, I wasn't leaking any urine. Then I gave birth at the age of 34,(2000) then all of the sudden the UTI's stopped for years, then in 2006 I was diagnosed with IC. Now my test consisted of the K+ test, I was never given a blood test, or even heard of that cocktail test you took, (My foot would have been so far up that docs butt) The K+ test (potassium) consist of a catheter up into the bladder filled first filled with saline, and then drained, then the potassium was shot up in there and it burned like nothing I've ever felt before! That is how I got diagnosed with IC. It is how they (Urologist) can differentiate between the saline and K+.

Seriously, before you go back to this doctor Please get yourself a second opinion. I would hate for you to continue to go through all these extensive testings that seem foolish, especially that doctor, is he a Board Certified Urologist?

And yes, anyone putting pressure on the bladder is going to be extremely uncomfortable especially if you already have problems. IC is a miserable disease to have. This is my second time of having it, And to make matter worst I just got a phone call from my OBGYN, and was informed of having cysts on my ovarie, let nature takes its course?? Talk about wanting to scream,,,,Come back in February for another transvaginal and abdominal ultrasound, I live three and half hours away from both my Urologist and OB. I'm told to take Ibuprofen and call it a night?? It doesn't help, but what I did find was that a low dosage of muscle relaxant does. It calms the bladder down, and I take Xanax as well, but it's hard to get through the day while taking those types of medicines.

I wish you the very best of luck and PLEASE get yourself a second opinion, and be sure to let that doctor know of it! Let me know how it goes, Meanwhile I am going to do some research on that cocktail and blood test, I just dont' understand either one of those tests? Makes me wonder......
Kathlene 41,
Illinois
Merry Christmas to you! & Happy New Year

[BeccaT]

I will let you know how it goes....
I had the potassium test done and I told the Dr. it felt cold... and he said no that's pain your feeling... But I disagree... I didn't feel pain.... with the fluid introduced to my bladder what hurt was the cath being put in.... I mean seriously... why put a catch in and bend it every which way.... some minor respect for tissue would be appreciated... But the fluid I couldn't tell the difference from the test 1 and the 2nd fluid they used in the potassium test....

The cocktail is.... About half way down the first paragraph it talks about the cocktail:

[moderator note: website address has been removed]

My study on this cocktail is insurance companies panic because the formula for this cocktail can vary between doctors.... It's whatever the Dr thinks will work with your system.... That's another reason I was sceptical.. I mean if my insurance won't pay for it.... what am I doing.... But this Dr... who is... Dr. Robert MsQuady says that you have to use the cocktail with the medication or the results won't work....

My local Gyn said to drink some mt dew and orange juice and see if I have a "flare" up which I assume is that annoying pressure on the urethra...? That's the only symptom I have.... I still don't understand how having that annoying pressure in the urethra proves there is lining damage on the bladder.... but I'm no Dr.... I drank the OJ and Mt Dew all day.... Nothing happened....

Now I use to think it was sex too.... Then I realized during an ultra sound that my bladder shifted after the birth of my 3rd son... And my husband was actually bruising my bladder... Which causes changes in the sex life... Another symptom of IC..... But my reason I've proven medically not related to IC.... child birth did it...

I just for the life of me don't think I have it... This one Dr talked about a cup place in the urethra can cause urine to back build and cause infections... alot of Uti's but doesn't mean there is lining damage anywhere.... it's a genetic growth passed down....

But the Dr. I went to said that most rape victims have IC that about 98% of his patients were victims... Then started asking me all these questions.... what really threw me off was when he asked me if it helped to talk about it... Because I thought wait I'm here for testing not a counseling session...

I just can't help but think something is way off....

I had the ultra sound too.... Now the Dr McQuady said not to worry and fluffed me off about it ... He said they were on my ovaries and one on my cervix.... Now I called my gyn and said hey what are you going to do... She said Dr McQuady never told her.... (She refered me to him so he was suppose to tell her) I said I watched him call you and leave you a message... and She said No I never got a message but get me your file and you come in here.... I had my file sent from the Pelvic pain place to my gyn.... She looked at the ultra sound pulled me in looked at everything and said the one on my cervix was gone and the one on my ovary could be from ovulating but it's really small... So she's watching but she didn't seem to be that nervous....
I'd never had the vag ultrasound before.... That was definately an experience.... But that's why I asked Dr McQuady to show my the holes in the lining of my bladder.... because I knew he had the ultrasound and I want proof before you give me medication.... Because to me... If I don't have cancer why are you giving me radiation and if you can't prove I have cancer why are you trying radiation... and one of the pills he was trying to get me to take had the same effect as radiation.... Well... Shouldn't I have proof....? He kept telling me he knows what I have and if I wait it'll get worse... But I've had no pain that potassium test... was the easiest thing I've ever done aside from the cath....

I really don't think I have this but one of the women at the pain pelvic IC treatment place said that denial is a natural course.... I just don't think I have it...

I have to get back to the holiday's.....

I'll post my email... here just incase....
[moderator note: e-mail address has been removed].

Have a wonderful New Year everyone....

[BeccaT]

Kath,
This is where I went....
[moderator note: website address has been removed]

[madjen66]

My apoligies for not getting back to you sooner, I've been busy with the holiday and all.

What a mess you are in! I can't begin to imagine going through that and with no true diagnosis? Mcquady sounds a bit quacky. I have done so much research about this IC I should change my career!
This website forum took out the information you sent to me. Now why would they do that?

So what is your next step? If you didn't not feel any pain while that K+ was being introduced then you got lucky, and yes I know the insertion of that darn catheter is more pain than it's worth. And after you drank all that Mt. Dew and Orange Juice and you feel no pain? I'd be on the floor crying my eyes out! I get that just having chocolate, crazy stuff. The most time spent for my research is the Mayo Clinic in MN. along with the IC Association site.

I'm sorry you are not finding the answers you are looking for. I'd be truly bald by now if I were in your shoes. Much luck to you!
Let me know how things work out for you.
Kath

[BeccaT]

Yes I don't know why they took out my things..... Maybe because I said the name of the Dr and that upset someone.... But seriously... Free speech as long as I'm not hurting anyone....

But my yahoo is [moderator note: e-mail address has been removed]

See if they take that out.... lol

Yes I drank all that and nothing happened I was fine so I'm unsure... I don't understand alot of it so I'm second guessing everything... I don't know what they will think of next I just wish I could figure it all out....

Where do you do your research... online? I know you can't post webpages but... if they don't delete my handle you can find me....

[madjen66]

yes they took everything out!! LOL,
you can catch me as [moderator note: screen name information has been removed] on the yahoo, if they don't take it out!
I am actually starting to feel like a human being again!! I cut out alot of foods, and especially pop, Getting a new job!!! I am so excited!!!!!!! I've been so miserable being where I'm at, and having the IC doesn't help me any, means it depresses a person, I figured if I'm already miserable from that why add more misery at my current job?? So once again, my screen name is [moderator note: screen name information has been removed].

Let me know if this gets taken out?
Thanks!!
Kathlene