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zoejane
11-01-2009, 06:53 AM
Hello, I have just had my second urethral dilation in less than 6 months. I am in constant pain when I go to the loo and am at my wits end.

Over eleven years ago I started to have extremely painful urination with lots of blood. I am now on my fifth urologist. My latest urologist diagnosed me with IC and then UNdiagnosed me. He says my pain is coming from my strictured urethra. I looked online about this and I do not fit the profile (I'm female, never had a sexually transmitted disease and do not have multiple sexual partners). I am so confused. The pain is too much.

I did some research on urethral dilation which says that this procedure actually can cause trauma to the urethra; thus, the stricture will become worse. So now I'm in a quandary; should I have another dilation if my urologist says I need one? If not, what can I do to relax my urethra? I was so positive I have IC.

Anyway, my symptoms seem to fit with IC: frequency, urgency, burning pain, cutting pain, sometimes bleeding and IC 'tummy'. I also have noticed a connection with food and drink - I cannot tolerate acidic foods or drink. However, my urologist says my bladder wall appears to be okay - but my urethra is tight and inflamed. So what do I do now? I can't possibly manage another dilation. Is it possible to have IC of the urethra and no signs in the bladder?

Please help me.

Take care, Zoe

Dakota
11-01-2009, 04:23 PM
Hi Zoe
I wish I could answer that question. My symptoms are exactly the same as yours. Three years ago I had three kidney stone procedures and then I changed Urologists to try to find an answer as to why I had those same symptoms. He did a cystoscopy, biopsy and the dilation and told me I would feel better after he stretched the urethra. Well it did not help at all and I finally quit seeing him after two years of nonsense. I just saw a new doctor last week and he has diagnosed me with pelvic floor dysfunction, possible vulvodynia and may do a cysto/hydro down the road after I have some pelvic floor therapy. I will start on Tuesday with my first session. With the symptoms you are having, I would suggest seeing a Uro/Gyn to be evaluated for PFD. So, my point is the dilation did nothing for me at all. I hope this helps in some way.

Dakota

zoejane
11-02-2009, 04:52 AM
Hi Zoe
I wish I could answer that question. My symptoms are exactly the same as yours. Three years ago I had three kidney stone procedures and then I changed Urologists to try to find an answer as to why I had those same symptoms. He did a cystoscopy, biopsy and the dilation and told me I would feel better after he stretched the urethra. Well it did not help at all and I finally quit seeing him after two years of nonsense. I just saw a new doctor last week and he has diagnosed me with pelvic floor dysfunction, possible vulvodynia and may do a cysto/hydro down the road after I have some pelvic floor therapy. I will start on Tuesday with my first session. With the symptoms you are having, I would suggest seeing a Uro/Gyn to be evaluated for PFD. So, my point is the dilation did nothing for me at all. I hope this helps in some way.

Dakota

Thanks Dakota, I hope you find your answers and relief. I am going to go to my doctor and ask him to refer me to a Uro/Gyn (although, I am not sure they have that combo in Vancouver). From what I have read from other women, pelvic floor dysfunction seems to come up alot with urethral symptoms.

Take care and good luck,

Zoe

dmking1964
12-14-2009, 12:55 PM
HI my name is Michele,I've had ic/vulva pain and muscle problems as well, my pt said to try trigger point injections,They put a shot in your vagina muscles, I get 4 each wk,but its different for everybody. They relax the muscles and to my surprise it helped with my urethra urning! Try it!

Jamey
03-14-2010, 08:26 AM
It is possible to have a non irritated bladder wall and still have IC. When I had my first hydro distention/dmso instillation my bladder looked like it had been burned and was peeling. I also had pinpoint bleeding. After many Dmso treatments, elmiron and various other treatments my bladder was healed. However I have severe urethral burning on a regular basis that I haven't found an effective treatment for. For some reason our bodies can't handle the acid in most foods and this can cause severe burning. Just because my bladder isn't irritated right now, it doesn't mean I don't have IC.

Tracie
06-01-2010, 08:46 AM
I was dialated when I was 17, it worked for pain. When i was 22, my symptoms came back, got dialated, it worked. 5 years later the pain came backso I thought-Oh I just need a dialation. Got one and everything got 10 times worse. This started my journey with the uro and had a cysto/hydro and a course of Macrobid for 90 days. Dx'ed with PFD by the uro. So maybe all the dialtions did cause further damage when I thought it was helping.

Lemur
06-04-2010, 07:04 PM
I have urethral pain BAD as well. That has been where my pain always was. I had a stanford trained PT do my physio and it didn't help and she began to doubt whether what she was feeling was trigger points. (????) she sure caused me a lot of pain though and she and my pcp at Stanford told me to keep taking morphine top ups before and after each treatment! How do you spell RAGE.

My point though is about messing w/ the urethra directly. If you look up urethral cancer, one of the predisposing factors is irritation to the bladder from procedures. What does that mean for everyone doing intravesicals and self-caths? I'm not surprised it eventually became worse. Not to say you have cancer by any means but the thing will only take so much it seems. Just like so many women get IC from hystos and gyn surgeries. The answer? wish I knew.

TexasHoney
06-04-2010, 07:53 PM
:grouphug: I wish I could help.

Hang In There, Zoe

MelindaP
06-07-2010, 03:50 PM
Zoe, I am so sorry for your horrible pain! I too had terrible burning in my urethra 24/7. It recently flared again after having a glorious 1.5 years remission. I think what helped me get into remission was following the IC diet, lots of prelief, Elmiron, Urelle(pee blue, but awesome) & being on a low dose BCP (Loestrin FE24). It was gradual, but over time I noticed I had less pain until it was barely noticable. I ate & drank anything! Also, taking Nortryptlyne 20mg at night helped too. I am hoping to get myself back into a remission. Sounds like you could have IC. I never had a hydrodistention, but was diagonsed based on symptoms. Have you ever tried installations? I am hoping you find some relief soon. Hang in there!
MelindaP

Mytita
01-22-2011, 04:31 PM
I have urethral pain BAD as well. That has been where my pain always was. I had a stanford trained PT do my physio and it didn't help and she began to doubt whether what she was feeling was trigger points. (????) she sure caused me a lot of pain though and she and my pcp at Stanford told me to keep taking morphine top ups before and after each treatment! How do you spell RAGE.

My point though is about messing w/ the urethra directly. If you look up urethral cancer, one of the predisposing factors is irritation to the bladder from procedures. What does that mean for everyone doing intravesicals and self-caths? I'm not surprised it eventually became worse. Not to say you have cancer by any means but the thing will only take so much it seems. Just like so many women get IC from hystos and gyn surgeries. The answer? wish I knew.
:)A couple of local IC sisters and I have compared experiences with local physical therapists who do pelvic floor physical therapy. They don't all do the same things and they really don't all get the same results. My therapist has helped me a ton with the pain that I called "urethral." I did not understand that it was actually muscle spasms until she worked with me to get rid of them! She goes to frequent seminars and brings back good therapies to help. I am blessed. I would say, try another therapist!

dmking1964
01-22-2011, 05:07 PM
I'm going in Monday to have my urethra straightened by a 'sling' he seems to think some pain at the urethra area is caused by my wobbly urethra.I have bad incontinance both kinds so I he thinks some of my stinging is pee that has caused it to 'chap' kinda like a babies bottom if u don't change them.they r also going to do 'hydroextension it has never helped me in the past that's where they blow the bladder up to stretch it.as many surgeries that I've had I shouldn't be scared, but am a little. scared of the pain to come.pray for me!!:angel: