7 years of bladder hell

[k_vendra]

hi all this is my first post..
a little about me
22 yrs old, female, employed as an OB GYN nurse here in ontario canada
history of urinary tract infections for 7 yrs
underwent 5 cystos
have been on long term antibiotics numerous times.
follow all the rules: wipe from front to back, no thongs, blah blah blah.
have been on elmirion as well (questioning IC)
have see 2 urologists....
currently have yet another UTI :(
I AM SOOOOO SICK OF HAVING THESE, THEYRE RUINING MY LIFE.....I FEEL LIKE MY UROLOGIST IS USELESS, AND IM NEVER GOING TO GET BETTER.
IM 22, NOT 82, AND I FEEL LIKE MY BLADDER PROBLEMS ARE GOING TO SET ME INTO A BOUT OF DEPRESSION. IM SEEING MY UROLOGIST (YET AGAIN) NXT WEEK. WHAT IS THE NEXT STEP IN HELPING ME GET BETTER?
THANKS IN ADVANCE

[ICLori]

Hi, and welcome! I guess the first question would be, are these "real" UTI's or IC flareups? I always thought I was getting UTI's, but the cultures would come back clean - and it was just an IC flareup!

If it's an actual, bacterial UTI, there may be a structural abnormality that is contributing to this - has that been ruled out yet? I know you said you've had cystos, but those don't necessarily show the ureters and kidneys...

If it's an IC flareup that feels like a UTI, then there are medicines that you could try that hopefully could alleviate your symptoms. The most common medicines prescribed right now are Elmiron (takes six months to work, only helps a minority of IC'ers), Atarax (works right away, but only helps a small minority of Ic'ers) and Elavil (helps about 60% of Ic'ers, works right away). In addition, some uros use instills such as heparin or DMSO.

There are other meds, but the list is too long to go into here, and you should start with the basic ones first and see if those work for you.

Blessings, and welcome - I hope you feel better soon.

Lori

[k_vendra]

thankyou for the help.
some are UTIs and some arent.. i have been on elmirion for over a yr, as well as had DMSO bladder instillations....
nothing has helped:(

[ICLori]

Hmmm....well, I'm thinking that it's time to try some other drugs, maybe. If you can get them prescribed to you.

I've tried soooo many meds - even had an experimental neurostimulation device put in me called the Bion - nothing really worked.

Now I am trying a med called cyclosporine-A - you can read about it here on the boards if you do a search (see the blue toolbar at the top). It's got some risks and some side effects (at first it did anyways) but the last couple of days I've been feeling good and I'm hoping it's starting to work (been on it about 7 weeks now.)

Anyway, are Elmiron and DMSO the only two meds you've tried? How about Elavil?

Blessings,
Lori

[PlainJane]

K_vendra,

I am close to your age (26) and living in Ontario. I can really relate to your post. Dealing with uros can be frustrating especially when you spend so long on wait lists to see them and nothing is helping.

Just wondering if you've had a urine broth culture done through United Medical Lab? Regular urine cultures look for gram negative bacteria like e.coli but there are gram positive bugs that can cause awful bladder problems (for example group d strep). Well broth culture looks for these gram positive bugs. It costs 129$ and I don't think insurance covers it. I paid out of pocket for it and think it was worth it because they detected my group d strep infection. I am working with Ruth ****, NP to treat this infection and heal the bladder wall (she's been a wonderful help to me and even suggested I pursue Lyme testing based on my symptoms and turns out I am high positive for Lyme...but I digress)

If I were you I would try broth culture if you haven't already. I haven't had any luck with urologists either.

Right now I am doing IV vitamin C for fatigue (low adrenals) but also to try and heal the bladder wall. I didn't think anything was working but today I was able to do almost 50 grams of IV vitamin C without my bladder going crazy (this is huge for me). Anyway there are still treatments I bet you can try like even oral vitamin c etc. I think there is still hope.

Honestly don't know how you've survived seven years of this. I have been going through this for 2 and a half years and many times I have been ready to scream. 7 years wow. That is awful. I really hope you find some answers. PM me if you want more info. about my treatments.

Erica