new....ish

[jacquie]

I have not technically been diagnosed with IC, because when my urologist tried to perform the cystoscopy, he discovered that I have a urethral stricture. After months of waiting, it's time to go and get a urethral dilation done.

My doctor is convinced that the stricture is congenital and that once it is stretched, my problems will disappear. He had another patient with the same problem, and she required two dilations over 6 years, and the problems disappeared altogether after having children. I have been reading and reading, and have seen some conflicting information on whether urethral dilation is a good idea, as it may be just another symptom rather than the cause of interstitial-cystitis-like symptoms. I would greatly appreciate it if anyone who has had experience with urethral dilation could give me their story on whether it was helpful; I haven't seen anybody on this board mention a urethral dilation without catheterization..

Oh, I suppose I should actually introduce myself apart from my urethera!
I live in BC, Canada, and have just started a career working for a mine reclamation consulting company (the stress flares, ugh!). I am 22 years old, and I have been suffering from recurring UTI symptoms for 3 years. I finally got referred to a urologist in June after a doctor actually sent my sample to the lab and attempted to culture my urine rather than just, I don't know, collecting it and watering the waiting room plants with it and telling me I have UTIs constantly because I'm an unhygenic whore (that's what I was told in front of everyone in the waiting room in a downtown hospital the first time I actually had a UTI, and was bleeding so badly it looked like I had my period from my urethra, and could hardly walk for the pain). Not that I'm bitter about doctors, or anything...

Anyway, since my (fabulous!) urologist told me that as far as they could tell, I haven't had another UTI in three years and I stopped taking antiboitics all the time and drinking a litre of cranberry juice a day, I had no flare-ups at all, until last night, when it was BAD like that first infection. I blame it on the conference and all the coffee that entails, and switching birth control pills in the last week :-S

I finally decided to join this forum, and rant to some people who actually know what I'm talking about, before I became one of those women who will tell anyone and everyone around about her endless health problems as though it's fascinating material that should be on Broadway!

So far, I've been very encouraged just by reading other people's stories- I'm not crazy, and there is no reason to despair!

[kelly McC]

Hi and welcome,
Glad you joined us.I had urethral dilation done when I had last cysto/hydro mine was done in the hospital so I cant say much as I was under. Here is a link to the handbook http://www.ic-network.com/handbook/ it has helpful information. I hope you are able to get some answers soon. let us know what you find out and I am sorry to hear you were treating like that ! Good luck,
Huggs,
Kelly

[ICNDonna]

I have had urethral dilations done --- it was thirty years ago when I was being diagnosed. It did make it far easier to urinate, which did help some.

I suggest you find something other than coffee to drink when at those conferences. Coffee can be a bladder irritant even without IC and could very well be responsible for the pain you are feeling right now.

I hope you feel better very soon.

Warm healing thoughts,
Donna

[Dixiefireball]

i have it done it twise once when i was a child and one time since i been an adult it did seem to help.
Also
I would like to :welcome: you to the ICN and please feel free to rant all you need too.
sending you hugs and prayers
Rhonda

[vm]

I had one done when I had my cysto w/ hydro - I didn't notice any big difference. It is controversial - but I think if you really have strictures it may be appropriate. I think when people get upset about them is when they are routinely done for someone with IC or suspected IC when there weren't strictures or some other anatomical problem that would warrant the procedure.

telling me I have UTIs constantly because I'm an unhygenic whore (that's what I was told in front of everyone in the waiting room in a downtown hospital the first time I actually had a UTI, and was bleeding so badly it looked like I had my period from my urethra, and could hardly walk for the pain).

I am so sorry to hear you were humiliated like that in the waiting room. What was said to you was awful and uncalled for. Sexual intercourse can lead to UTIs (that is when I get them - or used, to until I started taking an antibiotic after sex), but Polly Churchgoer could get them from sex in her monogamous relationship --- even if she showered after. I know b/c my I showered before and after sex with my husband - and we scrubbed up like we were going into surgery and I STILL got them now and then.

Good luck and I hope this flare subsides quickly for you. :kissing:

[VickiB]

Boy I can relate to your waiting room experience! Though over twenty years ago now, I remember sitting in a full waiting room when the doctor came through the door, holding my urine sample high in the air, looking straight at me saying...."This came out of you?" Talk about wanting to crawl under the chair! And yes, I also went through the 'uncleanliness' thing, becoming almost compulsive over hygene and it didn't make a lick of difference.

No, you're not crazy. And though not technically diagnosed, if it is IC you're dealing with, I want you to know most of us find treatments that help. I for one, found changing my diet helped dramatically. Hang in there and don't give up hope!

Vicki

[vm]

Though over twenty years ago now, I remember sitting in a full waiting room when the doctor came through the door, holding my urine sample high in the air, looking straight at me saying...."This came out of you?"

How awful...... :( :( :(

[jacquie]

Boy I can relate to your waiting room experience! Though over twenty years ago now, I remember sitting in a full waiting room when the doctor came through the door, holding my urine sample high in the air, looking straight at me saying...."This came out of you?"
Vicki

That was nearly exactly the same thing as what happened to me! I had never had to give a urine sample before, and was embarrassed already (not to mention TERRIFIED to pee!) and he sent me to the public washroom with a door that didn't lock and some women were in there putting on their makeup and chatting. So I was trying to sneak out and find the doctor (who had wandered off somewhere) holding my blood-with-some-urine sample walking down the hall. He sees me, comes over, walks into the (packed- Friday night, summer, downtown Vancouver) waiting room, holds my sample up to the light and says "well, you weren't kidding, that is a lot of blood!" then tells me to sit down. People got up and moved to other seats, or stood, so they wouldn't be near me....probably didn't want whatever it was I apparently had that had liquified my kidneys!

So he comes back out, says "yep, that's a bladder infection, and by the looks of it, you've left it a long time. Women get bladder infections because they see movies where after sex people just roll over and have a cigarette, but you can't do that. You have to get up and wash yourself off, and no double-dipping (anal then vaginal sex) anymore, and know who your partners are. Here, take these" and walked off. People who had been moaning literally stopped and stared at me.

All I could think to say was "I don't smoke". I left out the part where I shower regularly, never had anal sex, have a boyfriend I've lived with for two years... I was too busy staggering out of the hospital before I threw up or cried. If there's one thing N. American society has taught me, young attractive women are whores, de facto! particularly if they're a university student.

I had also not left it, I had just got home from work, nothing unusual at all, and was making dinner when I had to pee, NOW. It felt like I was peeing glass and razor blades, and there was a lot of blood. I had never even heard of a bladder infection before, so I thought I was dying! I called my boyfriend bawling (he was working out of town) and he told me that it was probably just a bladder infection and I should go to the hospital and get antibiotics. I was working outside in a botanical garden at the time, so I had probably gotten dehydrated and therefore not had to go to the bathroom at all, and not noticed the beginning of the infection that day.


It is actually quite astounding to me how badly doctors treat women...perhaps some men as well, I haven't heard any stories though. I have a friend who has several body piercings of which her gyno did not approve (though they are harmful or unsanitary or anything), and the woman apparently decided to teach her a lesson or something, and during her exam she made her bleed. My friend was dry-heaving that night from the pain and bled for a week, and had difficulty sitting down. Several of her friends have had similar experiences, with the doctors actually telling them they are whores. One friend of mine even contracted herpes from her fiance (now ex-fiance) who had been cheating on her with prostitutes, and her doctor told her that she was lying because "only women who sleep with entire football teams get herpes".. absolutely mind-blowing. She already felt great, that just crushed her.

It was so humiliating to me to have a urogenital problem, but I have to say I am now a lot more comfortable with strangers staring at my crotch, and hell, if you can get used to that, things like walking into a glass door in public or falling asleep on the bus with your mouth hanging open and drooling just doesn't have the same embarrassment potential. :woohoo:

[Katrina]

:welcome:
Well we get UTI because of movies ...I hadn't realized....now I know why I got so many....doesn't explain why my mother doesn't though. Weird doc.
I have had some really bad ones too....where there were multi colors of blood and gook in that cup...thankfully they didn't wait for the results of the test to give me the uti that time. (I guess it looked bad enough they felt sorry for me)

Anyway, we have been through theese embarissing situations way too much...but atleast we are not alone!
http://www.ic-network.com/handbook/
:grouphug: