In Office Hydrodistention

[Roxann831]

In my past research I read somewhere that Cystos with hydrodistention are never done in an office... but that's what I have sheduled for my diagnosis. Just feeling anxious. He said I'll be getting a cysto with hydrodistention and possible biopsy. He said he's going to insert a catheter and give some local anesthetic through there first to help numb it... the only pain I should feel is a pinch if he does the biopsy. I don't believe it for a second.

Any words of comfort or confirming my fear?? Is this normally done in the office, or was that website I read before right?

[ICNDonna]

Does your doctor have a surgery center at his office? The reason I ask is that my uro does have a surgery center, where I had my last hydro. I would not consent to a hydrodistention without anesthesia.

Donna

[Roxann831]

Thanks for your quick reply Donna. As far as a surgery center I do not know. I DO know that there was no talk of anesthesia... besides the local in the catheter. Him saying I would feel a pinch if he did a biopsy tells me I will be awake to feel that pinch. It just makes me uncomfortable that the whole point of this procedure seems to be to fill my bladder until I scream out in pain. Obviously doing this once for a diagnosis is better than going any longer with people thinking I'm making it up, exaggerating, or my mom's comments "You always did have a low pain tolerance", but if he's not doing this the right way, maybe I need to start looking for a new Urologist before I allow him to put me through this pain. Can they diagnose IC while doing a hydrodistention if you are sleeping or do you need to be awake to feel the pain??

Sorry for all of the questions... I just feel like after all this time feeling like a weirdo... I now feel like I just learned I was a member of a secret club. ;)

[ICNDonna]

I had spinal anesthesia when I was diagnosed so I didn't feel a thing. It's not what you feel that makes the diagnosis, but the appearance of the bladder and biopsy results.

Donna

[Mrs. Peel]

You have to be awake for the potassium test, which is so painful for ICers it is usually used only to rule out IC.

I've read that one reason to have general anesthesia is so your bladder won't spasm from being overfilled. If your Doctor wants you to undergo a hydro without general or spinal anesthesia, I might presume that he is very sadistic, and I would get away from him quick. You might also ask how many times he's performed the procedure.

Call the nurse and ask her to explain the whole process, keep paper and pen handy and take notes. When we're going through the initial diagnosis, a lot of us are too stressed to think or remember clearly.

You are fully within your rights to want a general. Don't listen to anyone who thinks you are being overdramatic or chicken. I had my hydro in an outpatient surgical center where I was attended by a nurse, an anesthesiologist, and my Uro. They were all nurturing and happy because they don't have gruelling hospital jobs.

One thing about general anesthesia, you do need (by law) someone to bring you and take you home.

[ICNDonna]

My suggestion has to be to tell your doctor you want to be anesthetized for a hydrodistention.

Donna

[Roxann831]

Thank you all for your comments/advice. I saw on someone's signature pane that their bladder ruptured during their cysto w/ hydro. :shake: After hearing that and what you all said, I think I am going to see my Primary Care doctor and show him print outs with what you've all said and ask him his opinion. Does he want to refer me to another Uro, does he think what he is doing is okay, or does he want to call the Uro for me?? I am so non-confrontational, I will have an anxiety attack if I have to call him and DEMAND something. Well thank you all for your advice. I will update after I speak to my Pri Care Doc. :kiss:

[Zygala87]

Roxann do listen to Donna's advice. You are wise to speak with your PCP and let him know of your concerns. In my case my PCP sent me to a OBGYN Doctor who was more then happy to do the HYDRO at the day surgery in the hospital. I was totally out. He filled my bladder and also took pictures. A terrible bloody mess but at least the Doctors & I knew for sure I had IC. The HYDRO it's self helped me greatly. I was able to sleep through the night and was relived in pain to a large degree. I wouldn't even let him do the in office potassium test. I don't trust that test anyway. I feel going for the Hydro would rule out or in what the heck was wrong with my bladder. It did. Please don't think that standing up for your self is being confrontational. Often to a Doctor you are one of many with a bladder problem. You are the suffering patient with one body and one bladder. One can be pleasant yet firm in what anyone wants to do to your body. It's like having a child. It's mine and I'll decide what is best for that child after I hear all recommendations. I'm sorry for your anxiety and pain. Please keep us posted. Hugs, Ziggy

[Dakota]

Roxann
I sincerely hope you will take the advice that has been given. I've never heard of anyone having a cysto/hydro in office. Sometimes we really do have to stand up for ourselves, and I think that is especially true for IC patients.

[mlzippy7]

Years ago I had an in office cysto with hydro. It was pure torture for me! I was in so much pain. I couldn't walk. I couldn't stand up. Then the dr has the nerve to say that it really doesn't hurt that bad! Yeah lets switch spots for a moment! From that point on I learned ALOT. ALWAYS stand up for what you believe and do not let drs push you around!!
Whatever you decided I wish you the very best!!

[maryla]

Let me just say that these ladies have given great advice here and THERE IS NO WAY I WOULD EVER CONSENT TO HAVING A HYDRO WITHOUT BEING PUT UNDER. It's like someone else said here, THAT'S VERY SADISTIC!!! I also think the potassium test is also!!!! WOW that would have to hurt!!!

And honey, do not worry about upsetting him, YOU are paying him, REMEMBER HE works for you.

hugs and blessings

[Mrs. Peel]

One more thing, everyone.

Please get copies of each doctor's records and test results, keep them in a folder, and bring it to each new doctor. We wind up seeing so many doctors, it's good for the new ones to be able to have access to what information we already have.

I'm also becoming more and more convinced that it would behove us to take notes when meeting with them. We get so frazzled by the traveling and being upset about being sick, we often aren't able to accurately repeat what we were told. I would ask politely whether they mind.

Roxann, you're doing great! It's not offensive to ask for what you want. You sound like someone who would not make unreasonable requests. I have a couple of doctors whose bedside manner is awful, but I decide whether to keep seeing them on their merits, such as one who really keeps up with new developments and is an excellent diagnostician.

[Roxann831]

Thank you all so much for your responses!!! :grouphug: :kiss:

UPDATE: Called Primary Care doctor for pain meds. Was told to take Aleve :cussing:. She asked why I haven't seen the specialist. I told her I did, but he can't do the test till August. She gave me the number to another Uro and told me to call them so they can get me in sooner.

Called new Uro. Going Monday for initial appointment. Went to old Uro to get copy of files and cancel appt. When asked why canceling said "Because August isn't soon enough and because from what I've heard doing this test while awake is pretty sadistic" :smile tee

Next day old Uro called me personally to explain himself. He said he didn't really think I have IC because I couldn't describe the right place for the pain and because I don't have extreme issues with Urgency or Frequency. Wasn't planning on filling me up all the way. As soon as I told him I was in pain he would have stopped, diagnosed me, and sheduled a hydro under general for treatment, along with a medicine. Says he can try to move me up on the shedule for this or I can call him and shedule a hydro under general (which is available sooner).

So my options are this...

#1. Go to old Uro and do it under local?
#2. Call old Uro and shedule general?
#3. Go ahead with plans for new Uro under general?

Mom says to go with new Uro because: #1 he did my dad's Vasectomy and the old Uro saw mom for Kidney stones... new doc was preferred #2 why should I go to a doctor that doesn't believe I have what I believe in my heart I have?

What do you all think? Your opinions have all been held in high regard by me lately. :help:

[Dakota]

I think that is a decision only you can make. I have never had a cysto/hydro because I had just got done having three kidney stone procedures. The Uro who did those didn't seem to know what was wrong, so I went to his partner who is listed on this site as being knowledgeable about IC. When I described everything that was going on with my symptoms, he told me he did not need anymore tests or procedures and diagnosed me on my symptoms alone, because I had just been through all the other tests. After him, I moved on to another Uro who did a Cystoscopy and biopsy. This was done in his out-patient surgery and under anesthesia. I would not do it any other way. :tsk:

I think the fact that your first urologist seemed to dismiss your symptoms would indicate that you need to find someone who is a little more compassionate (seems hard to do with Urologists), :rant:: and willing to spend some time explaining your options. I would at least go to the appointment you have set up, and seek a second opinion.

[Roxann831]

Thank you Dakota for your input/opinion/story. :) I'm sorry to hear you've had so many problems, but it was nice of your first doc to diagnose you without putting you through any more tests. Thanks again for the reply. I'm gonna go with what you, my mom, and my heart all say.

[ICNDonna]

It's your decision of course, but from what the "old" uro told you, he was NOT planning to do a hydrodistention without anesthesia, but only a cystoscopy. I had a cystoscopy in my uro's office with just the surface analgesic and it did hurt some, but was not horrible. He was able to have a quick look at my bladder lining and measure capacity (without distending my bladder at all). What we learned from this test was that I had low bladder capacity. After this test, we did schedule a hydrodistention in the hospital and diagnosed the IC.

It does sound like he's moving in the right direction, but as I said, it's your decision about which doctor does your testing.

Donna

[Roxann831]

Thank you Donna. Yes, it does kind of sound that way after the phone conversation, but the form he gave me as an appointment reminder said "cysto, hydrodistension". See...

http://img38.picoodle.com/img/img38/2/6/25/roxann/f_scan0023m_d2943af.png

He wasn't really denying that he was going to do the hydrodistention... just that he was going to fill me to capacity. I don't know. It all confuses me. Anyways... thanks for your reply. :)

[ICNDonna]

I'm not sure why he wrote "hydrodistention" if he was just going to fill to capacity. A hydrodistention is sometimes called an "over distention" --- which means actually stretching the bladder and definitely requires anesthesia.

It sounds like you don't have confidence in this doctor --- and a change would be a good idea for you.

Donna

[aprilchen]

OUCH! I would never do an in office hydrodistention. I had a hystersalpinogram this week in my fertility doctor's office and I about died! It uses a balloon to expand your uterus and yay I have a uterine fibroid. Surgery to remove it in July.

-April

[BT2008]

Like Donna, I don't understand why he wrote "hydrodistention" either if he wasn't going to go beyond your capacity, because that is the whole point of the procedure!!! -- And the primary difference between that and a cystoscopy!

I am glad to hear that you have another uro you can see, because I have to wonder if that first one knows what the heck he is doing!! I would run fast and hard in the other direction from his office if I were you!

Maybe the other uro will make you more confident in whatever he decides to do...I hope so for your sake!

But most definitely do not let anyone over-distend your bladder without a general anesthesia! You need to be totally out of it, period.

Good luck and let us know how it goes!!
~Beth

[Roxann831]

April :hi:- ouch sounds painful!! It's bad enough having a baby slowly stretch your uterus over a period of months... couldn't imagine doing that in a few minutes. Poor thing! :( Thanks for your input/sharing. :)

BT2008 :hi:- Thank you for agreeing with me and your advice. Made me feel better about being leary. :confused:

TO ALL - Went to see new doctor today. VERY happy. Not only does he agree with me that it is likely IC, but he is going to do the cysto NEXT TUESDAY, the 7th!! :woohoo: :dizzy: He is doing it the traditional way (in hospital, general anesthetic). He was also much more informative, explained that my being naturally a nervous person makes me more likely to have IC (some sort of trend they've been noticing?), even gave me a pamphelet on IC.

:confused:Out of curiousity... how many of you out there are a nervous person (have anxiety/panic disorders, a natural worrier, etc.)???? Since this was the first time I heard of the correlation, wondering how true it is.:confused:

[Mrs. Peel]

Wow! Yay for the new doctor, and Yay for Roxann!

:confused:Out of curiousity... how many of you out there are a nervous person (have anxiety/panic disorders, a natural worrier, etc.)???? Since this was the first time I heard of the correlation, wondering how true it is.:confused:

Good question. You should start a new thread with it.

I'm not that nervous, but I tend to hold things in. Classic for IBS and I guess IC, too. I also tend to clench my teeth.

[Roxann831]

:idea: Good idea Mrs. Peel. Thank you! I did... :)

If anyone wants to answer my question above, you can do so here. (http://www.ic-network.com/forum/showthread.php?p=496278#post496278)

It'll be interesting to see what everyone says. :smile tee