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littleQ
11-07-2004, 09:38 AM
Hi all,

My urge and the sensation to void got worse over this weekend and they are not letting up...

I saw an IC specialist and my regular uro last week and they both offered to dilate my urethra sometimes down the road if needed. The IC specialist offered to do the in-office dilation. I wasn't prepare to get that yet so I didn't ask him what that is entail. Does any may know what is the in-office dilation? Then, he said other dilation that you can do for me is to leave a catherer in my urethra for a day or two. That just sounds too crazy! Is that commonly done?

As for my regular uro visit, he offered to do a simple in-office dilation in which he inserts an round instrument that is narrow at its tip and gets wider as it is inserted. He mentioned that it is quick procedure and it is very safe. The instrument only need to be inserted about the length of my urethra (maybe over 1"). This should not cause any scar tissue or any other adverse affects. Have anyone received this procedure before?

Thanks for your replies!

LittleQ

liznazz
11-07-2004, 10:09 AM
I supposed all urologists have different opinions on this but my urologist doesn't feel that dilations are very effective. Some say they are a thing of the past. About 20 years ago the urologist I went to then, would dilate me in the office with a small glass instrument. I found it painful and uncomfortable. This is my experience however. My present doctor as I said before, feels they don't make a difference. When I was experiencing urethral pain before I was diagnosed with IC, he gave me celebrex to try (an anti-inflammatory) It took about a week, but I felt much better after that. I still take celebrex everyday.

ICNDonna
11-07-2004, 11:32 AM
I would want to know why the dilation is being suggested. In my early days with IC, my urethra was extremely small, which was causing problems. My uro dilated it and it helped. I have not needed to repeat the procedure.

Donna

littleQ
11-07-2004, 01:01 PM
Hi, thanks for the replies! My uro does believe that I have small urethra. In addition, all tests done so far indicated that I have no IC, but some type of urethral problem. Thus, he thinks that the in-office dilation may help.

Donna, how was your urethra dilated back then? Was it done in the office with a small round and long instrument as I mentioned above? My IC specialist also mentioned a dilation procedure that is done in the hospital. What is that involved? Lastly, have you heard of the dilation procedure, which they leave a catherer in the urethra for a day or two?

As always, thanks!

LittleQ

kelly McC
11-07-2004, 03:15 PM
I did have uretha dilation in May when I had my last cysto/hydro done. I was not awake for that procedure. I did not have a catheter with my procedure. My doctor described the procedure as you did.
Kelly

twiggy
11-07-2004, 03:25 PM
As far as I know, this was sometimes done in the past to help prevent UTI's and some people say it relieves pressure.

donutgirl
11-07-2004, 03:48 PM
I had that done several times about 20 years ago. VERY, VERY painful and did not prevent me from getting recurring UTIs!! In fact, I told the uro. at the time that he would NEVER do that to me again. But then again, that was when they put silver nitrate in your bladder to burn the lining off and cauterize it. Again VERY painful and not recommended. I've seen somewhere in all the literature I've read that the dilations are not recommended any more. I know my dr. who is on the board of directors for the IC Assn. said it does not help IC patients, but if you don't have IC, then maybe. I'm with Donna....ask LOTS of questions.

Hugs,

Diane

ICNDonna
11-07-2004, 05:15 PM
Mine was done in the doctor's office. I didn't even want to look at the instruments! That was nearly 30 years ago --- now I definitely would want to see what they planned to use and ask more questions than I did then.

Donna

Angie
11-07-2004, 09:36 PM
I've just had my 9th (I think - losing count now!) urethral dilatation. The reason I have it is that I have bladder outlet obstruction (not a stricture) and a poorly functioning detrusor, and dilating the urethra corrects the pressures (my uro calls it a re-calibration). It works - I have gone from complete retention to totally automatic! Anyway, two have been in-office and the rest under a GA, along with cysto/hydro. The procedure is the same wherever, though under GA he stretches it more. They use a series of metal rods, going up from about an 8 fr to a 32fr (or 36, can't remember). I used to do urology in the OR and watching the procedure brought tears to my eyes! In-office, I had local anaesthetic and loads of lignocaine gel, but the injections were VERY painful and I'm not keen to have it done that way again. That said, I was in so much pain in the recovery ward after my last GA that I'm not sure which was worse!

Love Angie

purpleviolet
11-15-2004, 07:41 AM
I had urethral dilations over 30 years ago in response to infections. I didn't get any more infections for awhile, but I did develop IC! :toilet:

Vonnie
11-15-2004, 01:32 PM
My Urologist did urodynamics a couple of months ago and determined that if adjusting my medications doesn't help I should have a urethral dilation under anesthesia. He did that once before while he was doing my cystoscopy four years ago. The results were temporary. I saw no long term benefit from the procedure. The pain it caused was worse than the symptoms it is suppose to cure. I told him that I will NOT allow any more dilations. Luckily the cardura prescribed in October is helping.
My urethra is also very narrow and showed pinpoint bleeding just like in my bladder under hydrodistention. My main IC symptom/complaint has always been urethral pain. My urologist tells me that is unusual.

blondiecat
11-15-2004, 11:50 PM
Hi Little Q, I had a surgical dilation done back in April 2004. I had to as my urthea was block all but the size of a pin head. I was unable to urinate but a little at the time and well my heart was in a mess due to the fluid build up in my body was toxic.When they did the test to see how much I could hold and void I had 40% left in there when I was done.

I did the in the office dilation, but my uro had his own surgery suite right there in the office. I was put completely asleep, so I don't know what all they did. I was out of work a few days as it was very difficult for me to walk. The gremlin that lives in my bladder was not a happy camper after that procedure. :headbang: I was given Pyridum Plus and Lorcet Plus for the pain. Not trying to scare you here but yes it does hurt, but it was worth it for me otherwise I could have died because of the poision in my system from the backed up urine.

littleQ
12-05-2004, 06:11 AM
Hi all,

Thanks for all the replies. I am still trying to figure out whether or not urethral dilation is a good idea for me. I have been seeing two urologists and one IC expert. The first urologist did the in-office cystocopy and thought that I have a tight urethral and urethral dilation would be helpful. The second urologist did another in-office cystocopy and thought that I did not have tight urethral. He kinda thought everything is in my head. I stopped seeing him. The IC expert reviewed my urodynamics report from my first urologist and also thought the urethral dilation would be helpful. Is urethral stricture very difficult to diagnosed? Why did I receive difference diagnosis?

My urine flow has improved after taking flomax. However, my main symptom, constant urge to void, has not improved despite all the medications. I also still get mild/irration after each urination. From all the information I have read, urethral dilation is used to help preventing UTI and sometimes for urethral pain. So I am not convince that urethral dilation will help my problem. So those who had help with the dilation, did it help with your urethral pain, urine flow, frequency or urgency? Finally, I am also considering lidocain/heparin installation. Do you think is a good idea to try a series of installation before the urethral dilation just in case I do have mild case of IC and just didn't show up in all the tests?

LittleQ

purpleviolet
12-06-2004, 05:06 AM
I've posted this before, but it may be of help here. I had urethral dilations - I believed they caused IC, back in 1970!
I also had a urethrotomy (cut the urethra in the hospital - ouch). Did nothing for IC. Are you sure your decreased flow is from strictures and not muscle spasms?

darlene
12-06-2004, 09:29 AM
I had urethral dilations done in the late 60's. They were done in the office, and caused me great pain and no improvement. My current uro said doctors were taught to do dilations in the past, even if the urethra wasn't small. Some have since learned, that they don't help, when the urethra is normal. Others, haven't kept up to date. Please be sure that you really need this procedure before you give it an ok. It turned out that the reason for my pain, in 1969, was IC. I was told that it was all in my head, by the Mayo Clinic. I saw a few uros, on and off during thre following years, but none could find a cause. I felt so much shame about being told I was "crazy", that I just suffered silently, all those years. I was fiinally diagnosed with IC in 2001! I hate to think that in 2004, people are still going through the same things I did in 1969! It is way past due, for the medical community, to update their knowledge and awareness of this disease. I hope I have helped.

purpleviolet
12-08-2004, 07:58 AM
I'd like to say I had a similar story because I had a series of infections in 1969 - so I went to a Uro back then - too bad I didn't know about cranberry juice for prevention of infections. I don't think I had IC until after I went thru the dilations. I just got this pain. I remember the first time very clearly. I was sitting on my bed in the college dorm. I had just been to a 'keg party' and all of the sudden the beer started to hurt my bladder in a way different from infections. The Uro just brushed it off and told me to sit in a warm sitz bath. After all, I wasn't getting infections anymore! Then I went to a series of Uro's even at top hospitals and they thought it was in my head. The only really kind doctor was Dr. Zinzer (sp) at Columbia Presbyterian in N.Y. He believed me. He even tried TB medication. If I thought I was getting an infection, I would drink cranberry juice and go to him. One time he looked at my urine and said he saw dead bugs floating around. Anyway he tried until he got too sick himself from lung cancer. As I said before, another doc did a urethral cut to widen it. Nothing. One doc accused me of having too much sex. (He didn't tell me that, but it was in his records.) Ofcourse, that was as far from the truth as possible! I wasn't diagnosed until 1991 by Dr. Bavendam (sp.) who later left the U of W. to go to I believe Maryland. I think she is a top IC doc. Sorry for venting. Keep your hopes up - the latest book I am reading is "Your Hands Can Heal You" by Master Stephan Co ( a Pranic healer) and Eric Robins,M.D. What attracted me to this book is that this doctor who wrote the book is a urologist and he even returned an e-mail to me! He doesn't claim your hands can cure IC per se, but he does write about how to direct healing energy to the bladder. If you have the time and motivation to meditate and perform the exercises, it might be good to try it. Just look on the internet for it.
:)

Mel53H
12-08-2004, 08:19 AM
I had a stretching (dialation) of the urethra back in the early 90's because of urgency. It seemed to help until recently.

tigger_gal
12-28-2004, 12:04 PM
urethral stretching is also know as urethral rape. It is un necessary to have done, unless you have a small passage.. My mother had that done for IC and it has created alot of scare tissue that had to be removed.. I have IC and was told that it was "old treatment" and not done any longer unless it is very necessary... 9 out of 10 patients have great success with a hydro
Brat

KChideaway
12-28-2004, 02:54 PM
It seems to have helped me.
;)
Karen

Angie
12-28-2004, 11:41 PM
I understand all the arguments for not doing it, but I have two problems - one is IC and the other is a poorly functioning detrusor/functional outlet obstruction (not a narrowing and not psychological either!), which I gather is a very unusual combination. Stretching the urethra is, I agree, very barbaric, but it is the only thing that really works for me, so as long as it does, I shall stay with it! If the only thing left after that is diversion, what do I have to lose?

Love Angie

ICNDonna
12-29-2004, 01:28 AM
There are some instances when urethral dilation is the best therapy. If it works for you, I would definitely continue this as a therapy. For me, and for about 50% of IC patients, hydrodistention is most helpful.

I also benefit from monthly DMSO instillations.

Warm healing thoughts,
Donna

Romans8:28
12-30-2004, 03:12 PM
I know this so controversial, but I had a urethral dilation yesterday. I've had so much urethral pain for so long and we've tried everything. This was a desperate try! It was amazing though I had no pain during the procedure. Since I also have kidney stones I have a perscription for Percocet. With the Dr permission I took 2 before my visit.My husband drove me!! I had soo many praying for me also. When I got there, last patient of the day it hadn't taken effect so my Dr sat and talked to me for awhile till it did. He also used lots of lidocaine and went slow assuring me if I couldn't take it he would stop. I was amazed, it never hurt! When he was done they also did a rescue treatment and gave me a perscription for Pyridium plus. Other then the Dr and nurses REALLY enjoying my woozy state, I left feeling pretty good!!I used ice right afterward too!
Last night I was sore, but many had severe flank pain. Felt like maybe swelling was causing some obstruction but feel much better now. Urethral pain right now feels better also.., so we shall see.
I just want to encourage that each of us must make individiual desicions on our treatment with our DR. Not all Drs are the same!

cat1t
02-05-2005, 08:37 AM
Hello!
I am new to the boards and was doing some searching on dialation. Yikes - this is the second round for me in 3 months. They talked about doing a procedure is this doesn't work. Do you usually have abdominal pain and bloating with urinary problems? I thought it was part of the hysterectomy but now they are saying no.
Any help would be greatly appreciated.
Cathy

Romans8:28
02-05-2005, 09:59 AM
For years I thought my abdominal pain was because of my last too rough deliveries.., but now find it disappears on instills! So yes that can all be connected! What kind of procedure are they talking about???
The dialation has still relieved my urethral pain, though not for everyone, I'm glad I did it!

Debgail
02-24-2005, 02:21 PM
I had several in office dilitations as a child thought to help bladder control,pressure etc. They were one of the most painful things I have ever had even over 30 years ago I can still remember. The now 2 uros I have seen dont believe in them unless it is an actual urethra problem. I know they would have to knock me out if I ever had to have another! Hope they numb you well!! :)

fireflicker285
03-01-2005, 09:16 AM
I know I get spasms in my urethra. Don't know if it is actually small or not. I don't think so. Sometimes I just have to start and stop and start and stop my pee to get it all out.

Dusty
03-01-2005, 09:19 AM
I seldom get the spasms anymore. I do however stop and start to urinate on the days I can on my own. If it becomes impossible or I just can't then I cath. I have cathed for many years now and it solves the problem for me.
Otherwise I have a bladder that is about to burst...not good..so my catheter
is a friend for me and goes with me everywhere...ha!
Dusty

Flarin-up Vicky
03-06-2005, 05:01 PM
WoW!!! That sounds very painfull!!! Is it,during and after?What is it like?Are you nimbed before it's done?

Romans8:28
03-07-2005, 12:27 PM
I took Percocet and my Dr numbed it so the procedure didn't hurt! Since I also get IC rescue treatments I ask him to do an instills afterward. They did, so the first time I had to urinate, pains meds were poured over the urethra and it helped so much! I did notice several hours later that I had rentention from the swelling but felt alot better by the next day!

Dusty
03-08-2005, 01:37 AM
People's bodies must just respond different..like they do with a lot of other
health issues. Some things are alike and some aren't. I didn't have that much
trouble with this procedure. I also have a high tolerance to pain and some people have a less tolerence to pain. I just mainly hurt when I peeeeeed the
first couple of times..I did not have any swelling like you though. I had
several of these done over a long period of time. Then we just switched to me self cathing when it became obvious I couldn't empty my bladder on my
own very easy...retained alot of residual. So they taught me how to self
cath and have done it for years now..then after my interstim I couldn't pee very often on my own at all..so I was grateful for my ability to cath..it gave
me freedom. Now I will hurt when I pee on my own right at the very end and near the urethra..I need to call him because this is new..and not hurt there before so I am not sure what is going on..as it is at the very end and right there too..and it is causing me a lot of pain..don't know what it is at all..like I said I never hurt there before. I hurt there with my interstim as it put my
bladder in spasms and so on..but it is out now. So something is going on with the body if I am hurting there now.
Dusty

marync761
04-08-2005, 03:21 PM
I've had two in-office urethral dilatations - first was because of frequent UTI's, I had not been diagnosed with IC at that time. It was VERY painful - I wouldn't be surprised if it is not some awful method of torture in some parts of the world! About 4-5 years later I was diagnosed with IC (February 2004).
I had the second dilatation about 6 weeks ago, and I had requested local anesthetic. I can't be sure, but the needle administering the lidocaine was nearly as painful as the actual dilatation procedure! My Dr was not able to dilate very much because I was nearly screaming in pain. I will NEVER EVER be willing to go through that procedure again while awake - I should have learned from the first dilatation! The only good thing that came from it is that I have improved flow while voiding. :toilet:
Dr wanted to do the procedure because of constant urethral pain - especially either at the beginning of voiding, or after - sometimes both. Then, last week, Dr "scoped" my urethra and discovered it is inflamed - surprise! :rolleyes: Dr said it is Urethritis. I plan on asking him for lidocaine or other numbing gel to put up there to numb (at least temporarily) the pain. Read about that in another thread - "The best thing I have found for urethra pain". I hope someone who is considering Urethral Dilatation will read this reply and maybe gain some insight from my hindsight. They say it is 20-20, right? :bonk:

Stephanie2004
04-09-2005, 10:46 AM
When I was seven years old, I had my urethra dilated in a series of appointments. The pain was terrible. What made the experience traumatic for me, however, was not the excruciating pain (kid's lives tend to be peppered with pain, anyway - think about learning to ride a bike, for instance). It was that fact that the nurse kept telling me it didn't hurt and to stop being a "phoney bologney." I will never forget the shame and outrage of having my pain dismissed and denied.

Romans8:28
04-09-2005, 11:27 AM
When I had my dilation my doctor told me that it would be VERY painful, but that he has several patients that beg him to do it because of the relief it brings them. We tired everything else first and I suffered for a long time before I was willling to do it. (I called it the Midevil torture treatment.) He warned me of the pain and then did everything he could to help make it not painful, mainly being kind, gentle & compassionate. Having or not having a dilation is a very personal decision. None of us are alike nor are our doctors. I can't say I'm in a hurry to try it again but I'm thankful I had it done.
I just wish all doctors who did it were like mine!
I'm sorry so many of you have had to suffer at the hand of uncaring doctors!

Portia17
04-09-2005, 02:52 PM
Why do they do urethral stretches for?

Thanks

Romans8:28
04-09-2005, 04:17 PM
usually for strictures, but sometimes it is used to relieve urethral pain! According to Moldwins book, there are several theories to why it works, one is it forces the muscle to relax the other is that there is some kind of infection in the tiny glands in the urethra, but no one is sure.
It does on work on everyone and can be a very painful procedure. For me it really helped!

IC sufferer
03-15-2009, 10:02 AM
I had to get a dilation because of bladder spasms and could barely urinate. I had one and didn't get much relief. Returned 4 days later and had a bigger one in which my urethra bled. The nurse said this was normal. I ended up with a UTI from it and 2 rounds of antibs and yeast meds.

Well, fast forward to a month later and I'm still doubled over in pain. I can barely sit. It never lets up. I do have long streams of pee now, but it feels like a hot poker up the bladder and the urthera just throbs.

I have acid reflex and everytime I take any meds like Pepcide AC or Nexium it hurts the IC even more.

I went back to the Uro who wanted to do another dilation to which I said NO. So he gave me Cysta Q which I haven't tried yet.

My 3 questions:

can a dilation cause this much pain months later? Years ago it would just do the trick. Do you think I should get another one?

has anyone tried Cystra Q? Did it give relief?

has anyone had a correlation between taking acid reflex meds and an hour later hurting your bladder for days?

Thanks for any help you can give me!

glassd18
03-15-2009, 12:11 PM
I was dilated when I was 22 during a cysto. I didn't have pain during as I was pretty numbed up, but it sure hurt afterward. I could barely pee. I did have relief after though. I thought that they didn't do urethral dilations as much as they used to. I think that's what my uro told me.

purpleviolet
03-15-2009, 12:57 PM
I wouldn't do again if causing pain. I had some done many years ago just before I got IC! Maybe they were the cause!
Anyway I believe spasms needed to be treated differently. I think spasms are in response to pain and then they cause pain and it is a hard cycle to break. Most likely physical therapy would be good. I don't know if cysta-q which is natural has enough spasm relief herbs but you could try as long as doc is not thinking it interferes with anything else...

Romans8:28
03-15-2009, 01:10 PM
IC Sufferer,
My URO is one, like Dr. Moldwin who will do a dilation as a last resort FOR URETHRAL PAIN ONLY, not for bladder spasms. I get about one a year and it relieves my urethral
pain only. NOw dilation or hydrodestentions done under anethsia, are used sometimes for bladder pain.

However either way if the first one does not work he will not do it again. He has told me old school was to keep doing them and they got a bad name. Too frequent dilation or too strenched dilations can actually cause problems. My personal opinion it that this is not helping your pain only making it worse. It would be better to try some other options for your pain. On Dr. MOdlwin's DVD he recommends 2mg of valium several times a day for this along with a good Pelvic Pain PT. There are other options also like vaginal suppositories etc.!

Hope your feeling better soon!

Shelly
IC Support Group Leader in Missouri and Arkansas
Director of MOARK IC

IC sufferer
03-17-2009, 10:26 AM
Thank you so much for your responses. It helps to know I'm not alone. I'm still in so much pain. I'm seeing an alternative Chinese medicine doctor tomorrow and want to try a more natural approach.

I do like the idea of Valium suppositories or oral. I have the name of another URO who is actually a specialist in IC, so if the above approach of acupuncture and massage doesn't work, I'll see him and ask for that.

Years ago dilations really did work for me, something this time was really triggered.

Thanks again!

Romans8:28
03-17-2009, 02:57 PM
We do have an article I wrote under patient info/ treatment options on our MOARK website.
This is many to network patients in Missouri and Arkansas but this article might be a help to you as well. Hope you find something to help with your pain and get back to feeling better soon!

Shelly

IC sufferer
03-18-2009, 08:31 AM
I'm not sure where I'm to post this. I couldn't find the correct thread. I was recommended to see either

Dr. Arieh Bergman, MD he's a Uro/Gyno in Tarzana, CA

or

Dr. Spigelman, MD a Uro also in Tarzana, CA

Does anyone have any feedback on either doctor or can recommend a good URO who gets IC?

I'll also look up the article you mentioned, thanks so much!

If this is the wrong place to post this please send me the correct link. Thanks!

Mrsrea
03-22-2009, 02:19 AM
I was just diagnosed last week. I also have an extremely small urethra and bladder. my surgery is tuesday to dialate my urethra and make an incision in it to hope it remains larger. then they are going into my bladder and try to expand it a little. afterwards I will be going in the office once a week for 4 weeks to get meds put into my bladder to try and repair the lining.

anyone else have this? I am so scared of the pain after surgery. I had a cysto done last thursday and I am still in so much pain from that!

glassd18
03-22-2009, 03:38 AM
I have not been cut to open my urethra, but I have been dilated, and the pain was there for a couple of days, but then went away. I had this done 22 years ago. I believe what you describe is a cystoscopy with hydrodistention which is usually used to diagnose IC, and is also used for some patients to give them relief. Not all patients respond the same way to the procedure. It is a bladder stretching while under anesthetic. If you are concerned you should talk to your doctors office. They may help to alleviate some of your fears. They usually prescribe pain meds after the surgery so you should have some relief that way. Good luck to you, and let us know how you do afterwards.

Mrsrea
03-22-2009, 04:00 PM
Yes I had the cysto with the fluid into my bladder, it was done at the office with no anesthesia at all. It was so painful. All I got was a valium before hand and it didnt help. It was only a few min but felt like hours it was so painful. Since then my pelvic pain has been awful. I am getting more and more freaked out about this surgery on tuesday!

glassd18
03-23-2009, 05:17 AM
Hi Mrsrea,

When you have IC, in-office cystos can be painful. A cysto-hydro is different though as they use general anesthetic (you are asleep), and stretch your bladder much more than a regular cysto. Try not to stress too much as this will increase your symptoms. Stress is my worst flare offender. After tomorrow it will be finished, and you will have better knowledge of what is going on, and then you can concentrate on trying to heal. You will be given proper pain meds I'm sure, but if you have concerns you really should call your doctors office and talk to the nurse. Ask them if proper pain meds will be provided after the procedure. It's your right as a patient to know as much as possible before you go through any procedure. I'll say a prayer for you okay!!!