Cysto w/ just lidocaine--very fearful!

[LollyDoll]

This is my first post. I'm new to the forum and have a cystoscopy scheduled for Friday.

This is the kind of cysto performed in the office with only lidocaine gel for anesthetic. I was shocked to hear they're going to stick something in my bladder without putting me out! I'm terrified of the potential pain, especially since that whole area is already swollen and irritated. (It's so swollen at this point, I can't even see my urethra.) I also have probable vulvar vestibulitis, so poking and prodding in that region can be extremely painful.

Since I just recovered from a strep B UTI, I'm also really scared of reintroducing more bacteria into the urethra and/or bladder. The nurse assured me they would give me an antibiotic beforehand, but I've read that taking an antibiotic without infection present can cause further deterioration of the bladder lining. Actually, I think it was the combo of the UTI and antibiotics continued long after the infection was cleared that damaged my bladder in the first place.

I'm 99% sure that I have IC. All my symptoms point to it, and the nurse told me if they can't find an infection or some other problem with this cysto, IC will most likely be my diagnosis. I don't feel like I need the formal Dx except that I'm in pain nearly 24/7 and need med management for it. If I thought they would give me painkillers without it, I would never agree to the cysto.

I have two questions for all of you who've walked this road before:

1. What did it take for you to get your uro to prescribe something for your pain? How many tests--and which ones--did you have to undergo before he/she agreed to give you something to quiet the hyperactive nerves and muscle spasms?

2. How bad is an in-office cysto with just lidocaine, both during the procedure and afterwards?

Btw, I'm about an hour north of New York City. If anyone else is in the Hudson Valley or NYC and has a good urologist to recommend or just wants to talk, please PM me.

[mary124]

I have had a few cystos done in the office. Sorry I can't help you in what the doctor gave me for pain- didn't have that much, I know that I took something over the counter. I did go back to work that morning.

[janet.]

Cysto w/ just lidocaine--very fearful!

I do not blame you. First, be sure of the actual procedure. I was 99% sure that I had IC (and unfortunately was right). I had general anesthia at a "surgery center" which is strictly a urology surgery center (point is hospital procedures result in much higher bills in my experience). I had a scope with a camera (revealed that I did have Hunner's ulcers). Also had to fill the bladder to see the lesions (think of it as a balloon; if it is not blown up you are not likely to see any small lestions, etc.) Also I had a DSMO procedure. Basically the diagnosis is done with treatment (that's the good part). My first hydro/DSMO lasted over 12 mo which is unusually long from what I hear. But from what you posted, I agree with you. Find another uro. Ask him if someone was going to probe his penis if he would be ok with lidocaine. I know you want to get this over with but if you are starting out with a less than compassionate uro, where is this relationship going? What can you expect in the future from this person in terms of ongoing care and needs ? If you are uncomfortable with general anesthesia, there is something between lidocaine and a general, personally... wake me up when it is over. I am home recovering now from my most recent hydro/DSMO. Best of luck. You will need to be your own advocate at times, having a good uro has made all of the difference in the world. Sometimes, I truly think he is the only one who truly understands. My husband has been wonderful, but sometimes he wants to "fix me" -or at least it feels like that. This disease is tough to understand. Why do I feel great one day and horrible the next day? You deserve a caring and compassionate dr.

[nanawaggs]

Hi, Lolly Doll ~ I'm very sorry you're having such a difficult time with all this. Regarding the Cystoscopy with lidocaine....

I was frightened also because I had a horrible experience with a Urodynamics test and couldn't fathom a "camera" up there. My doc is very compassionate and gave me some Ativan to take 1 hour before the procedure and another one upon arriving in the parking lot. I have to admit, it was nothing like my wild imagination had visioned. The Ativan really took the anxiety away and I truly believe I have a very gentle doctor/PA/nurses.

If you decide to go through with the procedure, try to relax as much as you can...tensing up just tightens all those muscles down there making it more difficult I believe.

I would do it again if needed, if that helps, but remember everyone is different.

Take care. Prayers,

[DaniMSC]

I don't want to scare you my dear, but I really want to help you so I'm going to tell you the truth as I experienced it. I had a cystoscopy in Spain this year and I don't think they even used lidocaine. It was the most painful thing I've experienced in my life, truly. I actually fainted when I got off the table after the procedure. It seems barbaric to me to do this to women with a painful bladder condition! If I were you, I would get my hands on some pain meds to take before the procedure like vicodin or tramadol or something. That might make a big difference. The cystoscopy was a hundred times more painful than all the instillations I've had since. I felt pretty bad afterwards too, but I can't remember how long it lasted. I guarantee you'll be better off than I was afterwards at least- I think I took the subway back home in an attempt to show my boyfriend how tough I was. :-/ That was stupid. You should be prepared with a driver to take you home, with a cold or hot pack and a pillow in the car so you can rest. My first cystoscopy in the states five years ago was a hydro/cysto and so they used anesthesia. Would that be an option for you? You'd get better results and have less pain, and maybe they could also combine it with a therapeutic instillation of some sort. In my case, there was also no evidence of IC in my bladder, so call it PBS because I definitely have a problem, and luckily I have pain meds to help me cope anyway.

Again, for me, the waking-cystoscopy was the single most painful event of my entire IC experience, actually my whole life, and I hope you can avoid it. If not, at least take some drugs beforehand. Best of luck to you.

[LollyDoll]

Thank you to everyone who answered and helped me reach a decision.

I canceled my cysto and scheduled an appointment with a recognized IC specialist. I hear he's sensitive to patients with pain issues. I figure if it has to be done, at least it will be with someone who does this often for patients with IC and understands our concerns.

Thank you for sharing your honest opinions and experiences.

[ICNDonna]

In my 36 years with IC I have had several office cystos with only a surface analgesic. I have found that if I concentrate on my breathing and relax, it isn't bad at all --- only mild discomfort.

Donna

[kadi]

My IC is pretty severe. When I had my most recent in-office cystoscopy, I took Darvocet (no longer available), took Flexeril (muscle relaxant), did an instillation beforehand, took pyridium, and an antibiotic. It was really unpleasant, but I don't remember any pain afterwards.

For diagnosis & treatment of IC, I had:
A sterile urine sample (taken via catheter)
Voiding diary (measuring & writing down how much each time I urinated for several days)
Questionnaires
Pelvic Exam
Pelvic Floor muscle exam
Vulvar biopsy
Pelvic ultrasound
Laparoscopic diagnostic surgery to check for endometriosis
Cystoscopy with hydrodistension under twilight sedation at the hospital
Blood tests for lyme disease and comprehensive lab work
Allergy testing

Most of the tests were to rule out other conditions than IC that could be causing my pelvic pain. I was certain it was my bladder, but my doctors weren't.

One thing--if you have a laparoscopy or cystoscopy/hydrodistension under anesthesia, make sure you agree with the doctors beforehand that you will receive photos of what they find. My first urologist said he wasn't 100% sure if I had IC, but when 3 other urologists saw the photos he took, they all said that I do have IC. I was glad I had the photos, I would not have wanted to repeat the experience...

Good luck! I hope your next steps bring you closer to relief!

[Carolyn M]

Hi LollyDoll~ Not to scare you off, but I know that a cysto can be done without hydrodistention. The problem with this is that your Uro may not be able to seen what exactly is going on in your bladder, kind of pointless. My Mom never had pain , only pressure before her cystoscopy with the lydocaine. It wore off shortly after and she has been in major pain since.....BUT she was also diagnosed with Hunners ulcers that most likely can not be seen without hydrodistention. The reason for her pain is hydrodistention which brings ulcers to the surface and then certain things can affect her, but without hydrodistention she more than likely would have never known about the ulcers which can be treated and many have had great success with treatment, we are now looking into all treatments available. Not sure when Mom will go forward but if it turns out this is you too, you can post me privately and I will keep you posted on her progress and treatment once she decides. I will pray you find some relief soon. Carolyn