04-23-2006, 04:17 PM #1
- Join Date
- Apr 2006
Inflammation in Bladder and narrow urethraAdvertisement :
I'm new here and not sure where to start. I just had a cystoscope about 2 weeks ago by my urologist in his office. He said I had trigonitis which I think is bladder inflaming. He also said this is from my urethra being to narrow, and all of the urine not coming out like its supposed to. He also so pylops and showed me on the screen while he was doing the cysto.
He did this same test about 5 years ago and saw the inflammation in my bladder then. He wanted me to have a outpatient surgery done and knock me out and burn all the inflaming out. I got scared and since he told me it was cancer or anything I chickened out that time. Hes never done any biopsies, 5 years ago or this last time.
Two weeks ago when I saw him, he said he wants to do the same surgery and also dilate my urethra, he wants to go in there burn the inside of my bladder and cut the urethra and sew it back up. I've heard of dilating with tubes but not cutting it.
I worry it will cause scar tissue and I'll have to have it cut over and over the rest of my life. I also worry it will cause me to have incontinence if he widen's it to much. I don't know what to do, I have pain and pressure but I don't want to make it worse or make worse things come of it.
Has anyone ever had this done or know anything about it. I'm scared and not sure who to ask what.
Thank you and God Bless,
04-24-2006, 01:04 AM #2
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- Apr 2006
I am new too!! just joined yesterday . I don't have any info to relay to you..just wanted to say hello.
04-24-2006, 03:30 AM #3
I suggest you see a different urologist for a second opinion --- and be certain it's not someone in the same office. It's not unusual for interstitial cystitis to be first diagnosed as trigonitis. When I was first undergoing tests for diagnosis, I had a series of urethral dilations and they were adequate to make it much easier for me to urinate.
And no competent, ethical physician will object to a second opinion. Usually they welcome them. If the second doctor says the same things, you will be better able to decide about undergoing the procedures.
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04-24-2006, 02:06 PM #4
- Join Date
- Apr 2006
Thanks for the welcome and info
Hi Donna, I'm wondering if you or anyone you know have had this diagnoses before? Or do you know anything about the surgery I mentioned he wants to do for the inflaming in my bladder or the cutting inside my urethra to dilate it?
05-02-2006, 05:12 AM #5
- Join Date
- Jan 2006
Hi! Sorry you are having these difficulties - it sucks I know. I have some information on the narrow urethra issue, having had problems with this myself. I had my urethra widened three times, once by cutting and twice by dilatation with tubes. From what i gather, it depends on why your urethra is narrowed in the first place. If it is just the way you are made then it can be a permanent solution,but if there is something else going on, as was the case in my situation, any relief you do get will only be temporary. The uro who carried out these procedures said there was about a 50/50 chance of it working permanently.
I had the procedures done under general anaesthetic and I was sore at first but I was pretty much back to normal within a week or so after the first one. I had complications the second and third time but that was because I have neurological issues as well, so it shouldn't happen to you!!!
I guess what I'm trying to say is don't worry about the procedure itself but be warned that it isn't always permanent.
If you have any more queries I'd be happy to help if I can .
05-02-2006, 06:06 AM #6
- Join Date
- Oct 2002
FYI I got IC after I had my urethra dilated in 1970 because of frequent infections which the uro blamed on a narrow urethra. The infections subsided, but I was left with IC (ofcourse they thought it was in my head then). Later in the mid 70's I had a urethrotomy (cut urethra ) to get rid of scar tissue. a painful procedure that had no effect on the IC. PV42 years IC. 2013 tried liposome instillations at California Stem Cell TC and the pain I guess from the catheter was too much. I tried 3 times. I am going to stick with trying a few old medications for now - hyomax and try vaginal valium. I still think herbs are so much safer than drugs.(I took an overview course a few years ago.) But there is so much little research on herbal remedies for this complex disease and people in pain need help as soon as possible, therefore RX drugs are necessary. I myself was trying elmiron (after cystoprotek and aloe vera did not seem to coat the bladder for me) Back to herbs, if you think that your IC is caused by histamines and allergies, etc, there are many researched herbs and herb formulas for that type of thing so perhaps that may be a path for you. But since IC is so complex, those herbs may not help. Perhaps if you think you are getting infections, there may be herbs that could deal with chronic, drug resistance problems but you would need some professional guidence. I believe I keep inflammation down by taking cucurmin extract, and other anti-inflammatory herbs - there are many good ones. You SHOULD find some that agree with you and your medication protocol if possible.
05-02-2006, 07:02 AM #7
- Join Date
- Jan 2006
I'm not sure whether the dilations have contributed to my current problems. I was initially diagnosed with urethral stricture (hence the dilatations) but after having urodynamics testing, my uro has discovered that my bladder does not contract at all when i pee Since the dilatations my urethra fails to relax as well, leaving me in complete retention a lot of the time. My uro's latest theory is that my bladder possibly never worked, but until my urethra failed I was still able to pass some urine, although I was retaining quite a bit and getting constant infections.
By the way, just to reassure the original poster, my case is FAR from typical. What I have described is apparently a neurological condition called Fowlers Syndrome and is very rare so don't panic about this happening to you!!
05-02-2006, 05:47 PM #8
- Join Date
- Apr 2006
I wanted to catch you up on what the urologist said last Thursday. As you can image I had tons of questions written down for him. I wanted to get some clear answers. I hope I make sense explaining it all, please let me know if you have any questions or if I leave something out.
Well he said I do have Trigonitis (bladder inflaming) and had planned to do a cauterization to burn it out, I believe a electro cauterization. (but no burning it out with any type of chemicals.)
And because my urethra is so tight he was going to do a cut "below" the entrance and put a couple stitches to widen it. I ask him about the scar tissue and he said yes there would be some, but that's what would keep the opening from tearing "up" and that there is a large vein at the top that could bleed a lot if the opening tore upwards, and that's also why he didn't want to just try the dilation with the rods.
I would have to go to him twice a yr to have the dilation with the rods done to keep it open after that, so the cut would only be a one time thing, if the rod dilation's were done.
No, cutting inside the urethra. He kind of compared the cut to a very small episeotomy (that's done during birth to avoid tearing).
Which unfortunately when I had my son (who's now 27) I ended up with pre eclampsia and then eclampsia and seizures during delivery. I had a very bad OBGYN to begin with, which is another story. But anyway during the seizure I did rip and they then finished doing a episeotomy. (It was something like 200 or so stitches inside and 100 and something outside.) So I know what that is. The urologist is talking about 2-3 stitches which doesn't sound to awful bad. From what I have read online, doctors do a procedure to cut the inside of the urethra if there are strictures(which I assume is like scare tissue) but he said this cut would be on the outside.
But at the end of the visit, he said if I wasn't having any or much pain and from what he could tell from comparing his notes 5 yrs ago to this last test, my bladder inflaming hadn't changed much. So if I wanted to wait, we could wait till I was ready. He wants to see me in 6 months to ck urine again and see how I'm doing and what I want to do.
I again ask him precisely about cancer or pre cancer and he said no, there wasn't any and he could tell by looking. He also said he'd never seen any one come back with a incontinence problem from cutting the urethra this way in the 28 yrs he'd been doing this. Which was a concern for me.
Also this will most likely make more sense to many of you then it did to me at first but I was asking him about the diameters of the cysto compared to the rods etc. He said the size of the cysto he used last time was a 20 french, the sizes of the rods he will use each time I come every 6 months(he said there are 3)go up to a 28 french, then the scope I guess he will use for the cauterization for my bladder is a 38 french and that's why I need to be asleep for it as well as the cutting under the urethra. I still have no real way of knowing what those sizes are without seeing them in person. But he did say my urethra entrance was very tight and even hard for him to use the small 20 french cysto during this last test.
Has anyone ever had this type of bladder or urethra procedure done or know anything about it?
Thanks for all your help and information with this as well as everyone's support. This a wonderful and helpful site full of great people.
05-06-2006, 10:36 PM #9
- Join Date
- Jul 2004
30 years ago
Over 30 years ago I had both procedures done and oh so much more that I FEEL contributed to my severe pain condition today. Sorry.
First I had a incompetant general MD that did not believe all of that blood was coming from "that hole" and when I could not urinate due to what later was discovered to be a huge blood clot, he sent me home and told me to just relax.
A three hour drive to the nearest hospital later, I almost died of uremic poisoning..and the lining of my bladder was compromised for good.
Then I saw my first urologist. And entered into hell. I had WEEKLY dialations (SIX HOUR ROUND TRIP BY CAR each time) with no anesthesia for ONE AND ONE HALF YEARS! Yes folks almost NINETY dilations with all sorts of rod sizes that literally ripped my urethra to shreds. This was an all too often barbaric practice done in the early 70's by male docs who really didn't have a clue as to the female anatomy it seemed.
OBVIOUSLY due to all of those manual dialations the scar tissue built up and my urethra was literally destroyed and stopped functioning. So then he of course got "his chance" to "fix me for good" by doing both the INTERNAL urethrotemy AND the "burning out" all of the trigone area of the bladder and then some.
Not only did this not solve anything but it began a life of painful hell which peaked in Jan 2000 when I woke up with SEVERE unrelenting bladder pain that has NEVER EVER let up since..not even for one second. In the 30 years in between I was never able to have a normal sex life or urinate "normally".
These surgeries/practices were common practice in many areas of the US BACK THEN. For "honeymoon cystitis" the male docs called it and many still do. Inflammation (often WITHOUT infection) from sex. Trouble is I had this all of the time sex or no sex..in fact I really could never have normal sex.
Let me just say that I would not have needed the surgeries if it weren't for the 90+ manual horrifically painful dilations and I wouldn't likely have the severity of pain/problems I do now if I had not had the surgery.
I would at least get a second opinion. Today I cannot do ANY invasive treatments for pain/IC as no one can get a catheter into me except using a tiny peds sized one and even then it usually either gets stuck and/or tears me open again and I bleed for days/weeks, etc. A simple lap to check for endo turned into a nightmare even though on my pre-op I ordered the smallest catheter possible...then had the referring doc do the same. Regardless I had a horrific outcome. It is because of this I am scared to death of any medical need where I would have to be cathed. No nurse can do it. Very few docs can do it - they usually must find a urologist to do it and even then some cannot believe it is so difficult and "force it" only to damage me even more.
Most do not LISTEN..they insist I am nuts and then "try" and I end up in more serious shape than they ever imagined.
All of this could have been avoided with better, more informed doctors in the early 70's IMO. I post this NOT to scare you as I'm sure medicine has come a long way but to suggest at least a second opinion. I do not subscribe to this treatment path unless a patient is living with either a urethra that is not functioning at all due to being too narrow OR constant infections PROVEN to be due to the narrow urethra (which many would be surprised to learn is not as "proven" as they once thought it was).
The cauterization of my trigone area never healed. It did not regenerate itself and was left scarred and burned which is NOT the outcome they expect nor one I would wish on anyone. You see they "burned" the part of my bladder where the wall had been compromised due to the "backup" that almost killed me which the LINING was already gone and they ended up "burning" the deep bladder wall instead. Yes I know this all now. I did not know it then. If I had....another story.
So long before I officially had "IC" if that is even what I have (as severe PAIN is my primary symptom..not the "overactive bladder" symtoms some of you have) I had a much destroyed lining of my bladder and urethra from "treatments and surgeries".
When I urinate it comes out in a tiny stream that shoots to the side. I forgot to mention that as a child riding a boy's bike I hit a sprinkler and came right down on my urethra which started the damage there. Went to hospital and was told I had torn my urethra. So a few years later when they said I needed dialations due to break up the scar tissue..I thought..I guess they are right. One or two maybe but 90+ then surgery. A doc would be sued for malpractice today for doing that to a young girl IMO.
So it only led to MORE and MORE scar tissue and eventual lack of function all together, surgery and now permanent pain.
Sorry..I turned this thread into "my" story instead of trying to help you. I DO NOT want you to think I am telling you to NOT go with your doctor's advise..just PLEASE get one more opinion before undergoing any invasive surgery on the urethra...OR bladder. AND make sure your symptoms NOW are SEVERE enough to even warrant consideration as there is RISK with any surgery.
05-12-2006, 12:24 AM #10
- Join Date
- Apr 2006
Thanks for the info
I'm so sorry to hear all you have had to go though. I appreciate you telling me of your experiences because I want to know the good and bad of this.
However I'm having a hard time finding anyone that has had the procedures done the way my urologist explained to me he does them. Seems I can only find ladies that have had the urethra dilation done by cutting inside the urethra or with the rods. Not done the way my urologist told me as I described in my above email.
Also when you mention the trigone area being burned, did they use a chemical wash or cauterization? You may have said in your email and I'm sorry if you did and I missed it.
Thanks again for your help.
05-12-2006, 12:31 AM #11
- Join Date
- Apr 2006
Thanks Blackcat for your info and help. I still haven't made a decision on what I plan to do. When you said in you post that your urethra was widened, can you tell me if the cutting method you mentioned was the cut on the inside or outside of your urethra (as I described in my updated email) Thanks again for your help.
05-12-2006, 01:10 AM #12
I had my urethra dilated during my cysto., my urologist was checking to make sure my urethra wasn't narrow, it wasn't. There was no cutting but after the cysto., hydro., and dilation I was in ROUGH shape for the few days following.. esp. during urination.
05-12-2006, 03:31 AM #13
- Join Date
- Jul 2004
The person to ask is YOUR DOCTOR. My guess is that an external is when they access/cut the urethra through the perineum.
Again..I personally would never consider having this done without at least one other opinion...maybe two.
When they burned me out, they did just that but remember, there were not easy/light burn lasers back then either. It was extreme and since there was no lining there to begin with it burned the other two layers of the bladder including the deep muscle both of which never healed. I can attribute almost all of my problems to medical treatments and procedures...which is extremely sad considering I am wholly disabled and unable to function.
Good luck with whatever you decide to do but I do think you are asking the wrong folks...ask your OWN doctor to explain the procedure and "why" and then get a second opinion. A GOOD doctor will NOT be threatened by that...a BAD one will.
05-12-2006, 12:49 PM #14
I stumbled across this message by accident. I just wanted to say I had a lot of work done on my urethra too by a older male doctor both by the rods numerous times while awake, all sizes. There rods had razor like blades that shot out of the side to cut open the urethra. I know you know what I am talking about because you had it done so often. I did not have it done 90 times but enough to not even keep track anymore. Eventually my doc switched over to laser and cutting after putting me to sleep. I believe that all of the times I had work done on that 30 year old urethra had something to do with why it got destroyed to the point of removal. I just went through a complete urethrectomy. I don't have a urethra anymore. I wish I had another story too but I have to work with what I have. I just wanted to come in and say that I understand the urethral surgeries. I will never forget them as long as I live but the urethra is gone now and I will never have to have it touched again. It has been fully removed and sewn shut. I hope I can move on with my life and I hope you can find some pain relief for your urethra. I am sorry you had to go through all of that. You are one VERY strong woman and should be so proud of that. Some people can't even stand a needle and look what you have endured! I've been there many times, you are not alone.
Again, I am sorry for what you have gone through. NO ONE Deserves that torture!
There are lots of people who can are would be willing to support you on here. This can often be the start of a healing process. I hear the pain in you and I know it all to well myself. I know the ICN as been a place to start to heal my open wounds and continues to be.
Last edited by Kara29; 05-12-2006 at 01:02 PM.Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
05-12-2006, 02:01 PM #15
Originally Posted by Kara29
- Join Date
- Jul 2004
90 is actually much too low of an estimate because sometimes a single session would involve 3-4 different rod sizes - the bigger the rod, the larger the "barbed edges" and sometimes "he" would "do" four sizes each one larger than the previous in one visit.
I would bleed for the entire week, horrific stinging pain and huge blood clots, often infections HE caused following and of course it was a SIX HOUR round trip in the car to go there and get this done and I "had" to get it done EVERY WEEK for almost two years. It makes me very sick but the real number is probably closer to 175 actual dilations with barbs and all since I did not get the surgery until Age 17.
I often wonder whether or not these doctors REALLY thought they were helping OR if they subscribed to the all in your head theory and figured that if they tortured you enough you would "give up and go away". I SHOULD have gone away after my first urology appointment. Actually after the general doctor almost let me DIE due to uremic poisoning which destroyed my bladder AND almost killed me.
The above is only one part of my story and the "least graphic" way I can tell it. We all have stories but some are perhaps a bit more graphic than others. I would feel guilty if I did not share mine though regardless of if it "upsets" some or not.
It MIGHT save someone going through what I did. It MIGHT even save someone's life. I sure wish someone had been there for ME.
I don't just have the horrific urethra pain..my bladder is completely shot...and I may one day face the same surgery as you. Sometimes I fantasize about how great it might be but in all honesty...all of the "crap" I had done also caused damage to my ENTIRE system..kidneys, liver, etc. So I am really a mess. But as you can tell by my name..PAIN is the only thing that bothers me...24/7 about a 9 WITH pain meds. Never one second without it.
I also have some cancer and heart issues to worry about along with various other health matters...lungs too...all of which make ANY surgery a huge risk for me.
Anyway..I have read your posts on here Kara and praise you along with others for coming forward and sharing your story..and for your courage too! Thank you for the reply.
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