Newbie with some questions

[KWLori]

Hi everyone. I was finally diagnosed with IC this past August. I have been looking at your wonderful site here since before then and after I got diagnosed and am learning so much from reading the threads and posts. I finally decided to register and introduce myself.

I am 46, married with 2 kids. I had chronic UTI's back in college and saw my first urologist then, when I was about 19. He put me on antibiotics for a long time but I still had pain without infections so I believe I had IC even clear back then. He put me through painful uretheral dialations and my first question is has anyone else ever gone through these? If so, I would love to hear your experiences.

He then gave me a cystoscope and burned out polyps in my bladder. My next question is had anyone else ever had polyps removed like this? Mine keep growing back and I have now had to have them removed 4 times. I drank cranberry juice daily for many years. Still had pain and just learned to live with it.

I have been through several differnt urologists over the past 25+ years looking for some relief. I moved to S. Florida 17 years ago and now my choices are limited. My urologist here is a nice guy but is old, about ready to retire, and I think is antiquated in many ways. I feel I am educating him! I don't have anyone else to chose from in my small town and with my horrible insurance, he'll have to do. He did his first cystoscope on me in 2003 and removed polyps but I continued to have problems and this is when I started looking around on the internet and discovered "IC", I asked him if I might have this and he at the time said he didn't think so, so for the past 4 years I have just lived with this pain, which is getting worse as I age. Finally this past summer he said he wanted to perform another cystoscope and this is when he finally diagnosed me with IC. He started me on Elmiron 100 mg 3 x's a day on August 28, 2007 and upped it to 4 x's a day about a month later. I started off following the diet I found on your site and felt so happy to finally have a diagnosis and know what was wrong with me. I felt pretty good within a month and was so happy.

Well, around Christmas I started having pain again and the uro told me I had an infection and put me on 10 days of Macrobid. Afetr 10 days, I felt worse. He then put me on Cipro for 10 more days. Right now I have no infection but am in so much pain. I am wondering if these antibiotics really hurt my IC or if I may still be hurting from the infection? Anyone know? My uro just answers that he doesn't think so, I really think he doesn't know.

Also, another question, he put me on Tramadol on Monday for thepain and I got so sick from it. I spent the next 24 hours barfing. I have never been able to handle narcotics or codeine or many medicines...so what do you all take for pain, anyone else have any trouble tolerating pain medications?

From what I read on this site I asked him what he thought about Atarax and Elavil and he called in both of those for me. I just started the Atarax tonight for the first time.

Ok, my last question...for now! Since my cysto in 2003 I have developed stress incontinence. No fun. My uro has tried me on several different meds for this, like vesicare, with no success. Does anyone else have this problem and if so, have yu found something to help? I have to wear a poise pad all the time cause if I sneeze or cough, I wet myself. I also wonder if this is from just one too many catheters or from my uretheral dilations back when I was younger?

Ok, I lied...one more question. He wants to do DSMO instilliations but from what I have read here and there on your site, they seem to not have helped anyone! Has anyone actually had success from these? I asked him about the rescue instills I have read about here and he didn't know what I was talking about.

I could ramble on but I'll stop for now, Hopefully some of you can answer some of my questions.

Thanks!!

[armslee]

I am sooooo sorry to hear all that you have been through. I found that most of us have been through the same experiences with doctors and getting diagnosed.

From my personal experiences, Atarax and Elavil did initially help me. It does take time for the drugs to build up in your system. This is especially true for Elmiron. Don't give up hope! Things will get better.

It sounds as if you are in a really big flare since Christmas. Flares are times in which our symptoms seem to increase. But fear not, things usually start to get better with time. I have not had DMSO instillations but did do Heparin. They seemed to relieve some of my symptoms temporarilly. I hope you have similar luck.

The thing to really remember about this disease is that we are all different and respond differently to medicinal therapies. Think about some alternative therapies as well such as massage and physical therapy for your pelvis. The PT really works well for me as well as low impact yoga and relaxation breathing.

Are you working right now? I did full time until about a year ago when cancer forced me to have a total hysterectomy. I went back to work for 2 weeks after healing and because of complications from the surgery and my IC, I have been disabled ever since.

Please continue to read and educate yourself as much as possible. I found that extremely helpful in the beginning. I too learned of different medications on this site and my doctor is very willing to work with me on anything I want to try.

Take care and let me know how things progress.
Lots of love and prayers!
Wendi

[leelee88]

:hi:And :welcome:To the ICN

It looks like you are on the right track as far as meds. If you have not started the Elavil I would start that as soon as possible for it is what got my pain under control. I would suggest you take it around 7pm though because the first week you might be tired during the day. But it will help you sleep. I started on 10mg and worked my way up to 25mg. Unfornataly I had to get off of Elavil due to side effects but was able to switch to something like it called Tofranil.

The atarax is also something that I have found really helps my IC. Also I am on the IC diet. I hope you are not still drinking cranberry juice, for that is a BIG no no for ICers. Well Like I said I think you have the right meds. Now you jusy have to give them time to work..

[SharonA]

Hello Lori and :welcome: to the ICN... :)

I really don't have much to add to what the other's have already told you. I do want to encourage to try the Elavil. It is my main IC med and has helped me tremendously. I was in such horrible pain before taking it, but now I only have very slight burning in the bladder occasionally. I also started with 10mg and have been taking 25mg for several years.

No one is ever happy that another person has this disease but I am glad that you have been reading the information available here. I don't know how I would have learned everything I have if it wasn't for this site and these supportive people.

:) :) :)

[KWLori]

Thank you all for your responses and encouragement. The Atarax made me very sleepy and I had a hard time getting up this morning. I haven't started the Elavil yet, I thought I would start them one at a time since they both have that sedative side-effect. From reading your posts here, I for sure will start it soon.

I do work M-F 8-4, 40 hrs/ wk. I have missed a great deal of work especially the past 6 months. It worries me how much I have missed.

No, I learned from this site to no longer drink cranberry juice. I had no idea diet played a part in my pain. When I was feeling pretty good a few months ago I decided to try and drink a smoothie, made with delicious orange juice, and boy did I pay for it.

Before I read the list here I drank soy milk and green tea as well as lots of mineral water thinking they were all healthy for me...I really think they were some of the main problems for my bladder pain.

I used to drink TONS & TONS of diet coke, for years and years and years and after reading here, I wonder if it played a part in hurting my bladder in the first place. I have never been a coffee drinker.

I also had 2 C-sections...does anyone feel this can cause bladder trauma?

[leelee88]

I hope you have stopped the Green Tea and Soy Milk I know it can cause alot of pain to the bladder..I suggest you start the Elavil as soon as possible because it takes a few weeks for your body to get use to..And If you are in pain. It really helps with the pain.

[KWLori]

Yes, I have stopped the soy milk and green tea. I am only drinking water and milk and baby pear juice. Boring!