PDA

View Full Version : Hi all new here:)


Jennifer1014
04-01-2005, 02:47 PM
Hiya all,
My story begins practically the same time I got married 12 years ago. It all started by being told I just had simple bladder infections and UTI's. I finally went to a urologist around that time that told me he wanted to do a cystoscopy to see what was going on. It was probably the most horrible thing I have ever been through and that's after having 3 children by c-section. The urologist never found anything (or so he claimed). I went on to take very antibiotic I could get my hands on kinda felt like a junky searching for drugs but it just seemed to be the only thing that would do for then. I would go on vacations and everytime I would get to my destination I had what I thought was a bladder infection I couldn't believe it no matter what I did I still got one. Years went by and another cystoscopy and still the same urologist saying oh you just have a sevsitive bladder and here's another antibiotic. Having to use a condom everytime my husband and I would have intercourse was really weighing on me I really don't know how we ended up having the 3 kids but I am sure it was a burning agony each time. So years went but that brings me to 2 months ago when I had taken 3 antibiotics within 1 week and it wasn't working this time so I got a new urologist that said that the old one didn't want to take the time to deal with this disorder and he would start me on what he called a cocktail. It was urised, elmiron and elavil. I can't take the elavil because I am super sensitive to things that make me tired ie. benedryl, nyquil etc.. This seems to be working I have been on the elmiron for 30+ days and it is a GOD send! Going through this for 12 years and a simple cocktail and it is under control, i don't get it!! I have some questions about the effects of the elmiron but posted them in another catagory. Thanks for hearing my story and hopefully it may help another as your stories have helped me:) Jen

VickiB
04-01-2005, 03:06 PM
Hi Jen, glad to have you join us!

Sorry you had to go for so long without diagnosis & treatment! I did too. When I think about it I get rather angry that I'd been left in that pain for so many years. If I'd only picked the "right" doctor somewhere along the line!

You'd mentioned whenever you'd go somewhere you'd end up with bladder infection symptoms. That's just what would happen to me too. It turned out that my IC is very diet sensitive. And it's when I'd go away from home that I'd indulge in food & drink that I didn't normally have at home. If you haven't tried the IC diet yet, I really recommend it. It can be found in the handbook along with lots of other great information. http://ic-network.com/handbook

I'm glad you're feeling better and hope you continue on that path!

Vicki

kelly McC
04-01-2005, 03:20 PM
Hello and welcome,
Sorry you had such a long journey I did too ! I really hope it gets better for future patients and better a cure for all !!! The diet can be helpful. glad your feeling better hope elmiron is the treatment for you. Glad you found us
Kelly

Katrina
04-01-2005, 03:34 PM
hmm. :welcome: Sorry you have been suffering so long. Odd that you are helped by elmiron so fast...how did you take it?
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?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

Babs RN
04-01-2005, 03:42 PM
Just another hearty welcome to the ICN. Katrina has provided you with an awesome list of links.

Hugs and :welcome: ,
Barb

Sarojini
04-02-2005, 01:56 AM
:welcome: to the ICN... really sounds like you have IC because your Elmiron is working so quickly, but have you had either the potassium test or a cystoscopy with hydrodistention at the hospital under anesthesia to confirm it?

Anyway, I really understand the feeling like you have a bladder infection as soon as you get somewhere -- for me, just the act of travelling (in a plane, in a car) can make my IC flare up. I just experienced this in the last few days as I had to take a plane trip -- of course, my IC acted up but now I am able to manage it much better since I am on the proper medication!

vm
04-02-2005, 03:35 AM
:welcome: So glad you found us and that you are feeling better! :)

Jennifer1014
04-02-2005, 11:08 AM
Thank you all so much for the warm welcome and for the wonderful websites. I have not started the diet yet but know what things make me flare up ie. chocolate, caffeine and even a wedge of lemon with my water is a nightmare for the next day. I could go on for days the things that get me flaring up. The urologist got the previous results from the 2 cystoscopies both with hydrodistention and I was awake through both of them. A few years ago I went to another urologist that suggested he go in and do another cystoscopy and i immediately said no because it is so painful and he said no we will put you out this time and I just couldn't because once the scope went in I would be in burning hell for 4 days and I just couldn't go through it again. I had a cardiac ablation done in Oct. and I told the nurse DO NOT put in a catheter while I am asleep because it will gve me bladder pain what I now now is called flare ups and they did and when I woke I was burning horribly and yelled for them to get it out even being so fresh out of surgery and not all the way in my mind but I knew that I was gonna be in pain and I was for 4 days. So you see it's been such a roller coaster with this that I am looking for anything to make it better. I am experiencing some issues and I'm not sure if it's maybe a side effect from the elmiron or the urised when having intercourse with my husband so I am going to ask the doctor next time I go in if anybody is experiencing the same please please help. Thanks for all your help:)
Jen

Amyinagony
04-02-2005, 11:45 AM
:welcome: Jen!!!
I'm sorry too that you suffered so much for so long before finding the answers. Here too, on that one!! You certainly are not alone on that one!! So glad that you've found relief too!!! :) :woohoo:
Glad you've joined the group too!! :grouphug:

rubjen
04-02-2005, 03:06 PM
Welcome Jen****** Glad You Are Aboard,you Will Find Loads Of Info To Help You As You Read This Board.it Is A Blessing.
Ruby Jean