question about urodynamics - help!

[Jenlong]

I think I have two seperate issues going on. I started with a UTI back in July. Was treated, then returned for a repeat culture test...no bacteria. Came back with symptoms - blood in urine, but no bacteria. They treated me with antibiotics again anyway. Couple of weeks later, same thing. Couple of weeks later, same thing. Well, I'm on my sixth antibiotic since July now. Still have blood in my urine and UTI symptoms off and on. Also, back in July I discovered my bladder is herniated through the vaginal wall (cystocele) which I've now planned surgery for in December.

Well, I had to have a urodynamics test yesterday which is standard preparation for this surgery. I heard it was not really painful so I wasn't too anxious. Well, this was the worst pain of my life! As soon as the catheter went in, I felt great pain and it just intiensified during the test to the point that I was crying and holding on to some bar to control myself and remain standing. I have never cried through any procedure. I think I have a pretty good pain threshold. This was horrible. My bladder hurt like hell and my urethra stung like someone had a knife in there. Even after these were removed the pain continued for hours. Finally, a pain pill and Utira and vesicare soothed things enough for me to rest. Still, when I had to pee, it stung so bad I had to pour water over myself to ease it. Thank God, today it's much better. About 90 percent better.

My question is, I changed docs when one suggested it might be IC and wanted to do the potassium test and also wanted to do a hysterectomy when repairing the cystocyle (fallen bladder). Now I;m wondering if it actually is IC and if I need to see a urologist or just let my new gyn. treat this.

I can't believe how much pain I've had over the last few months and especially yesterday. I'm guessing the catheter for the procedure and then filling my bladder with something (I think just saline solution) just set off the spasms like crazy. The doc did say as he was reading the report that I was having severe spasms.

What the heck should I do next?

[Eline]

Hey,
I can't tell you what to do, but I do know what you mean about the urodynamics. I had a regular cysto and urodynamics and they both hurt like nothing before. The nurses reacted very surprised, both times.

Going back to the doctor who seemed to know about IC might be a good idea. As far as I understand, a potassium test is a simple procedure. When you're diagnosed, you can still discuss what route to follow. I understand that a hysterectomy is very scary and invasive - how old are you, if you don't mind me asking?

[ICNDonna]

I think if I were in your place, I would ask to have a potassium test. Be sure to request a pediatric catheter --- they are much smaller and less painful. I also suggest you practice some relaxation techniques. When I'm going to have a catheter inserted, I concentrate on breathing slowly and evenly and consciously relax all of my muscles. It does help.

And I would definitely encourage a second opinion about the hysterectomy if you have any doubts about the need for the procedure.

Warm hugs,
Donna

[SharonA]

The potassium test for IC should probably be at the top of your list as far as testing. At least then you will know if what you are dealing with is IC. I am defiantly not in favor of rushing in and having a hysterectomy if one is not needed. I believe in doing the least invasive thing first. :):):)

[Jenlong]

Thanks for reading and for the advice. I'm almost 35 - didn't think I'd be faced with needed pelvic reconstructive surgery at my age, but hey, I guess having children didn't agree with my innerds! I went to this second doc originally for a second opinion regarding the hysterectomy along with the cystocele (fallen bladder) repair. He agreed with me that it's not necessary, so why do it. The first doc thinks it's a good practice because there's evidently a high percentage of patients who have similiar conditions who later need the hysterectomy, so just do it all at once. I disagreed.

My constant UTI problem, though was going on at the same time, and I thought was related. However only 1 out of about 6 lab cultures have turned up with a bacterial growth. And I've had serious pain! My previous doctor was ready to do the potassium test when I left them. This doctor just keeps thinking it's a UTI returning and says sometimes they just don't show up on the lab culture. It's all starting to fall in place for me though. I was asymptomatic when I first came to him for the second opinion regarding the cystocele, but he seriously manipulated my bladder in that exam and I left a little uncomfortable. That discomfort grew and grew until two days later I was in the most pain I had felt from this whole thing. I went back to him and was prescribed some pain meds and augmentin.

Now, when I went back again for the urodynamics test, I was prescribed levaquin just in case it's yet another UTI that made the test so painful. I'm thinking it's just the irritation from the cathater and the bladder test that set me off so bad. But thanks to the levequin, now I have a raging yeast infection.

I'm so fed up I just don't know what to do. I don't understand how the NP that did the urodynamics test could see me in so much pain and not try to figure this out if it's suppose to be no big deal. I mean, seriously, this was the worst pain of my life.

So, yes, I guess I should ask for the potassium test, but I can't tell you how gunshy I am about another cathater. I'm scared to death to go have a test that might cause this much pain again.

I'm glad I found this site. Thank you for the support.

Jen

[Claredale]

When I had my urodynamics test while going through the steps to see if the interstim was the right thing for me to do, my doctor told me that it may possibly be painful. By then my urethra was so sensitive to caths due to DMSO treatments I had with another doctor. Even the pediatric cath was like inserting a knife. My doctor allowed me to take Valium prior to the test. While I do remember being uncomfortable, I was okay through the procedure. I remember shaking some as well, but my doctor did the testing herself, so she helped me through it almost as if I was in labor. I have a very high threshold for pain, which is definitely a benefit for me. As soon as my test was over, I took some pain medication and back then Trac II which is very much like Prosed DS today. It turned my urine blue, but it helped with the spasms. I was even able to drive myself home and that afternoon, I worked from home. I guess due to the Valium, I really don't remember much about the urodynamics test. Of course it's been almost 10 years ago, but all I can really remember now was how wet I felt and Dr. Doggweiler telling me to let her know when I would feel different sensations. Mainly I just remember alot of tubes and that I felt as if I was on some assembly line. That may have been the meds, I have no idea! I have read on this site that most people aren't told to take meds prior to this procedure, but I am soooo glad Dr. Doggweiler knew me well enough that I would need medication. Truly the DMSO treatments have distroyed my urethra. Even having my annuals done now, I have pain for a couple of days. Prior to my DMSO treatments, I never had issues like that.

These days, my doctor knows not to cath me unless absolutely necessary. The last cath I had was during my interstim surgery and my doctor was very clear with the nurses in the recovery room to make sure I didn't wake up prior to them removing my cath. They also gave me "good drugs" to help me manage that day.