Diagnosed A Few Months Ago With Ic

[JULIE05]

Hi, I recently was diagnosed with IC and have been looking for a online support group because there is no group in my area. I was considering starting one, but I am relocating soon. Dreading the trip across country with my symptoms! It is so good to hear that other people have experienced what I have and know that I am not alone. I have had my symptoms for about 7 years. Does anyone else seem to have recurring UTI's and also IC? Thanks. ;)

[traceann]

Hi Julie and :welcome: Glad you found us! :woohoo: You have come to THE right place for information, meds info, support...you name it, the people here and the site are fantastic. I have no idea how I would have made it through the first few months prior to and after diagnosis!!!

I always have had lots of UTI's, now I wonder though how many were "true" UTI's... It was to the point I was in all the time, and pretty soon, I could just call the office to get antibiotics called in for me. I had had the IC symptoms about 5 years ago, they came, stuck around for a few months, enough to have me running back and forth to the doc, for painful urination and horrible vulvar itching. Could never find anything. And just he'd decided he could do all he could do, he was going to send me to a uro. Then I went on vacation, and poof, it all went away...until last year. After putting up with it for MONTHS again, I finally broke down and went to my doc. He gave just Ditropan in the very early beginning. No IC diagnosis yet. I found this place, scoured through the Patient Handbook. Here's the link to it: http://www.ic-network.com/handbook/

And I lurked around the boards, reading all I could, for a couple months. I printed off some info, and brought it up to my doc, after trying one more round of antibiotics, as I actually had a UTI at that time, he finally decided to try me on Elmiron. Then Vistaril was added in few weeks later, and been doing better every day.

Are you following an IC Diet? It's a huge tool for me to keep my bladder happy, here's a link to the IC Diet foods list here also on the site:
http://www.ic-network.com/handbook/diet.html


Once again, glad to meet you and hope to see you around the boards!!!

Hugs!

[JULIE05]

Hi, Thanks for responding. It's funny you should say you went on vacation and it went away for awhile. I am moving across country in a couple of months and I am hoping that my symptoms will quiet down. I have not really stuck to the diet, my doctor gave me a list of what not to eat. Thanks for the link, by the way. I definetley do not have any alcohol, soda, or OJ or I will pay for it later. I have tried treatments of DMSO, but after 3 times I couldn't take it. He said I had a chemical reaction in my bladder to the DMSO and I had very severe burning and pain. I live on Pyridium and Uristat. I also seem to have a bunch of other symptoms including frequent UTI's, last week I had a pap smear and I had a bacterial vaginal infection. The doctor's office called me today and said my pap results were abnormal and I need to go in for a Colposcopy. My biggest problem is I have had constant uterine bleeding for over 9 months now. I had a D&C when I had the Cystoscopy and thought that would stop my bleeding, but I am right back where I started from, still having constant bleeding. My gynecologist said my only option now is to have a hysterectomy, but I am only 26 years old, and don't know if thats what I want to do, but if this does not stop, I guess I have no other alternative. Anyway hope to chat with you later, have a nice day.

[Sarojini]

:welcome: You have been given some great advice by Tracey. :) Definitely check out the handbook, as it gives a comprehensive list of treatments -- there's more out there than Uristat (Pyridium) and DMSO, so if that's not helping there are other things to turn to!!!

I'm sorry you're having so many GYN problems too... I hope you can get everything taken care of.... :grouphug:

Definitely look for an "in-person" support group where you are moving in CT -- if there isn't one, start one :) One piece of advice (gained from experience) -- you may want to start calling urologists and IC specialists NOW, before you move. When I moved from TN to NC, I thought it would be okay, but it turned out it was REALLY hard to find a good doctor and I ran out of meds and all kinds of horrible things. Definitely call around to some CT uros (you can get a list of them by writing to lindasalin@verizon.net (she's a patient advocate for the Interstitial Cystitis Association) and ask what their philosophy on treating IC is....

[vm]

:welcome: I have a diagnosis of IC and had a lot of actual UTIs as well. I now take one antibiotic pill after intercourse and that has kept the UTIs away for over a year - but I used to get them 4 to 5 times a year. It's really a pain to figure out if it's an IC flare or a UTI, huh? :(

[Katrina]

:welcome: to the ICN!!!!
Recurrant UTI's and IC are common :(

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is nexbie kit from the oldies to the newbies

[traceann]

Moving can be a stressful event and keep the bladder pretty darn cranky, lol. Are you on any IC meds???

I agree with Jen, start looking for a doc now in your new area, as it can be quite a challenge sometimes!!

Oh I too am sorry you are having all th gyno troubles! I remember when I had to have a colposcopy, I was so nervous, and turns out it wasn't any worse than a pap, really, just a bit longer etc. Hopefully it will give you some answers, before a big step like hysterectomy at your age. ;) Keep your chin up!!

Hugs!!!

[VickiB]

Hi Julie! Gald you found us!

IC & UTI's go hand in hand for me as well. Not a club anyone wants to belong to, that's for sure!

Welcome to ICN!

Vicki

[~*~Christine~*~]

Hello and :welcome: