Cystoscopy with urethral dilatation 2 days ago...

[j9rose]

I am new to the group so I will just start by saying, I like the rest of you, am completely fed up with living like this. It is so comforting to know I am not the only one dealing with pain like this...

I have had UTI's for years and went to countless doctors and have gotten hardly any help. I finally decided to put my foot down and start trying to find out what is going on with my body. I have UTIs pretty much everyday, sometimes showing a bacterial infection and sometimes showing no infection, even though I am in pain. I was FINALLY referred to a Urologist had a consult and scheduled a Cystoscopy. I also have a barrage of menstrual problems and suspect Endometriosis but that is a whole other journey...

I had a Cystoscopy 2 days ago, the doctor said my urethra was very narrow from the hundreds and hundreds of infections I have had for the past 13 years and I needed a dilatation. He also said he saw no hemmoraging and my bladder walls looked okay, my kidneys looked fine also... I went ahead with the dilatation (though after doing some research post procedure, I am thinking it wasn't such a good idea) Aside from the fact it was painful, the aftermath is the most painful thing I have ever experienced. They said I would feel some "stinging" while urinating...ha! I would take a UTI any day over it. I started taking some Cystex and that is helping a great deal with the burning...

After the procedure, the dr seemed to act as if he had "cured" me, I just don't see how that is the end all be all of it...I mean the infections started from somewhere else and caused my urethra to become narrow (supposedly)

I just don't know where to go from here, who to believe, who to go to for help. I feel helpless and alone and I want answers...

Does this sound familiar to anyone out there???

[colourmetwice]

Its never the end.

Good for you for putting your foot down--you finally got somewhere, but don't lift it now! You're making progress, however slight.

[irishnan3]

J9Rose; Keep demanding treatment. Maybe you should see a URO/GYN. It took many years of Uro's & so many different drs. and surgery to get my DX. Not till I saw a Uro/Gyn did they mention the possibilty of IC. So keep going and maybe you will start getting the answers you need.

[j9rose]

Thank you for the encourgement! I am in the process of finding new doctors/specialists...so lets see what happens next :)

[tigger_gal]

urethra dilatation is also known as urethral rape. It is not necessary to have it done (I wish you knew before hand) If you could not void, well then maybe it is necessary if it is blocked or closed. I know this, because they put my mother thru it many years ago. It old school treatment and they actually thought that it world work. What is so horrible was she went thru this treatment for months on end using a larger insturment each time.
Some one with the worse case of IC can have a normal looking bladder during and in office cysto.. I myself had a doc tell me my bladder was fine, and I had a hydro, it was a fireball that held les then 350cc's under sedation.. I would keep your foot down to and get to the bottom of this.

[j9rose]

Thank you for the insight Tigger_Gal...I am still trying to learn all that I can...So there are more intensive tests that can be done? Thats what I thought, but the urologist didnt even SUGGEST anything else. Honestly , I did not feel comfortable with the doctor so I am in the process of finding someone new, actually switching hospitals completely. Is a hydro done in the hospital? I am not sure what it entails, I will have to do a little research...

[ChanceHope'sMom]

I have done all the tests on bladdar and kidneys, I kept telling the urologist it was a damaged urethra, I could feel pain when I pee that isn't an infection.
Sure enought after trying to scope my urethra and not be able to get anything in the doctor agreed that 7 yrs. ago after childbirth the nurse had damaged my urethra putting catheter in to empty my bladdar. Over the years the scar tissue has grown to the point, the urologist said she never seen this narrow of urethra in 20yrs.
Then he said if he were to surgically widen it could quite possibly damage it to the point I would have incontinace.

He was totally shocked I can even pee more then a drop. Anybody have an idea. He said manage the pain and deal, because the cure will create more problems I might regret.

Another Urologist told me its extremly rare for a woman to have this narrow of a urethra and could be very tricky once they get in there. What should I do, he gave me pyrelle Hd which change the color to a stained orange and gives me quite a headache.

Its hard to believe I just have to live with it, but I don't want to lose control over my baddar either,

HELP!:help:

[j9rose]

I am so sorry you are feeling this way, I understand how you feel completely. First off I STRONGLY recommend you see another dr and another and another until you feel confident you are getting the best care you possibly can get. Remember you deserve it! Get a third, forth, fifth, tenth opinion if you have to. You do NOT have to live with this. Any doctor who tells you to "manage the pain and deal" is just covering an inability to diagnose your properly. Do research, talk to everyone you can on the boards do whatever you can to get more educated about this. I wish you the best of luck and I hope you feel better! Keep me posted...

Janine

[ChanceHope'sMom]

After reading the post about narrowing from infections...it interesting because was going to perform an in office scope and then widening and teach me how to also stretch it at home.
Only because he couldn't get the smallest scope in did he stop. I have to say he was baffled and went and asked the other urologists their opinion.
They all seemed to think I probably was right that it was caused by tons of scartissue from a cath procedure gone bad....
but why doesn't that show up on a catscan?
I truely wonder if that profession is very imature in their willingness to discover the exact issue.
When I asked if it would be asking other doctors who may have seen similar case his response was "If I and my colleagues haven't seen it no one has"

I'm also thinking scartissue continue to build if it's really even the problem.

I'm glad this forums here, it weird having a problem that the "so-called experts" can't seem to agree on. But I'm not doing any procedure now until I get a lot more info.