**FINALLY** Got diagnosed

[IHAVETOGO]

After 8 months of symptoms and a laissez-faire attitude by my previous urologist, I found a urogynecologist at Stanford Medical Center (Dr. Sokol) who specializes in this problem. He actually listened and took the time out to investigate my complaints and made the diagnosis :bow: . I am on a protocol of Elmiron, Atarax and Elavil. I'm sure others are on this same protocol. I would like to know how it's working for others.

In reading through some of your posts, I know that I don't have nearly the degree that others have (for which I'm grateful!).

I hope others who feel that they can't get help through their GP or Urologist continue to seek out help. FYI, the doctor I saw (Eric Sokol) works closely with Dr. Chris Payne at the Department of Urogynecology and Pelvic Reconstruction.

Angela

[emilyrose197377]

:welcome: to the ICN.

[Dede29649]

I was recently diagnosed in Dec. 05. My new gynocologist was the one who wanted to look at this issue. so far I can't take anything that has been prescribed. Elavil puts me in la la land and the elmiron stop my bowels. I have such a sensitive systom that he doesn't really want to prescreibe anything else. So I'm going the way of herbs. My dr. is okay with that as long as I'm careful. I do have a prescription for pyridium; which is just about the only thing I can take and even that's kind of strong. I did order 4 books off of the internet concerning this issue and they were very informative and eye opening. There is a cook book for IC that really helps and my daughter likes the recipes. wonders never cease!!!! The first book I read was you don't have to live with cytitis by larrian gillespie. If you look on Amazon.com for that book it will list others along those lines and they are so helpful.

[Vampireness]

I'm glad you finally got diagnosed Angela, and really happy you found an understanding doctor.

About the medication I can't say much but I'm sure alots of others will give you an input on that, because I just recently start on Elmiron and was taken off it again. Thats my first oral treatment to IC.

I hope these pills start working for you though.

[Imustpee]

I am so happy for you! Finding a dr that listens and understands... :) ..I was diagnosed in 1976 (but I had already had IC symptoms 10 years before that)...the only treatment was DMSO then,,,that didn't work for me so I was untreated until 2004.....I had my bladder removed 3 months ago and I am IC free and I actually have a life out of the toliet...I am so glad that people with IC have better medicines and treatments now.......welcome to the board...please keep us posted on how you are feeling..

[Vampireness]

I am so happy for you! Finding a dr that listens and understands... :) ..I was diagnosed in 1976 (but I had already had IC symptoms 10 years before that)...the only treatment was DMSO then,,,that didn't work for me so I was untreated until 2004.....I had my bladder removed 3 months ago and I am IC free and I actually have a life out of the toliet...I am so glad that people with IC have better medicines and treatments now.......welcome to the board...please keep us posted on how you are feeling..


I am so sorry that you had to live wit it for so long and was undiagnosed for 10 years????????????
So there are so many treaments rite now...didnt any one of them work for you? Because you took off your bladder......

How long are you able to stay without peeing? How many times a day do you pee? Stupid question probably...but...do you have to carry a catherer everywhere you go?

[Imustpee]

I tried everything except for Interstim..I did NOT want that..after suffering for 40 years I had finally had enough. I was peeing 40+ times a day..my bladder held 2 1/2 ounces....I do have to take a cath everywhere, that's no big deal, you just have to make sure you have some supplies,,,cath, hand sanitizer, plastic bag or paper towels to put the used caths in....it's no problem to pee in public bathrooms..I cath every 3 - 3 1/2 hours during the day and 4 - 4 1/2 hours at night...my new bladder has held as much as 2 1/2 cups of urine..I have no more pain or any IC symptoms..I started having frequency when I was 6 in 1966....the dr's said my bladder was small and I would grow out of it..I didn't... :)

[marsi4]

Dede, Elavil as well as other meds like hydroxyzine, or pain meds, will sedate you at first but then your body will adjust and become tolerant and you will no longer feel sedated, only slightly. You need to use some type of med to help with your symptoms. If you take the natural path try Gotu Kola. It is an anti-inflammatory and helps strengthen connective tissue. Some people who have tried it have gotten great results.

Marsi4

[Dede29649]

Thanks for the info. Stuff like elavil scare me to death. They are chemicals. I'm not saying that I won't do them If I have to, because if things get bad that I have to do them, then I will. But for now, I'm going the route of eating as healthy and natural as possible and herbs. So far this is working for me. Marshmallow root is an anti inflammatory also and it is gentle.

[TheMoonandBach]

about the bladder removal... what is that all about? is that a last resort kind of thing? i was wondering if i could get more info about it... please and thank you!!--Heather

[Vampireness]

Sorry probably should have started another thread, but I saw it in her signature and had to ask. Suffering since you were 6 is so difficult Imustpee, so all those time you experienced the symptoms did you go to school/work? What is interstim? that is a really dumb doctor, the one who said it will go away!!!

Another question: Why is that that when a bladder is removed, you need to cath and cant pee on your own???

[Vampireness]

Thanks for the info. Stuff like elavil scare me to death. They are chemicals. I'm not saying that I won't do them If I have to, because if things get bad that I have to do them, then I will. But for now, I'm going the route of eating as healthy and natural as possible and herbs. So far this is working for me. Marshmallow root is an anti inflammatory also and it is gentle.

What medication are you taking so far?? And what are your symptoms?

[ICNDonna]

Angela, I'm glad you found a physician who recognized and is treating your IC. It sounds like he has put you on a pretty good treatment schedule. The elmiron can take up to six months or longer to become effective, but the other meds should help you get through while you wait.

And for responders:

Bladder removal for IC is rare --- only a very few of the over 10,000 people registered on the IC Network have had to go to that extreme. However, throughout my 31 years since I was diagnosed, just knowing that if I ever do get really bad, there is still that option --- somehow, that is a comforting thought for me.

It's very important to think about the fact that herbal remedies are also medications and have the potential for side effects. That's why when people are scheduled for medical procedures, a question about herbs is nearly always included.

Donna

[Dede29649]

"My" IC is a mild case. I was having very bad abdominal pain on a constant basis. What I wasn't telling my 1st gyn. was that I was going to the bathroom alot and 1/2 the time I almost wouldn't make it to the bathroom -embarrassment, I guess. (I had always been told as I was growing up that was sign of old age) When the pain was bad I would have a clear thick discharge. I ended up having a laporoscopy to find out what the problem was ( since we assumed it was a female issue). that showed nothing, but I ended up having complications from that simple surgery and the dr refused to take care of it and told me to go elsewhere. (thats another story) I ended up having to find another gyn that would treat me. That turned out to be a blessing, because he is the one that wanted to test me for IC. But before I was able to get my records to him, or arrange for the test, the pain was getting worse and when I went back to him to see how he could help, he offered me a anti - depressant. He didn't know me and for all he knew I was after a quick fiix. That was the first time in my life I had ever been offered something like that. I went home and decided I wasn't going to live on Advil and I wasn't going to take any drugs he was offering so I would change my diet and do my best to get back to basics, go all natural as best as I could to see if that would change things. I bought 2 books on how to do that. Within 2 -3 weeks most of the pain had stopped, the thick discharge went away; but not the frequency. It didn't continue, the pain came back; but not as bad. At the end of Dec he did the test and it came out positive for IC. He tried me on elavil for pain (which as long as I can I'm not going to stay with) I got started on elmiron - but that stopped my bowels. As long as the pain isn't too bad and it's too much of a problem my dr. is okay with me using herbs. I do have pyridium for the bad days. that does work for me. I'm not saying that all medicine is the worse thing you can do; I'm just saying that it scares me to death to put all those chemicals in my body and If I can find an alternative that works, that's the route I'm going.

[IHAVETOGO]

Actually, I'm not real "fond" of the response I had to Atarax. I thought it was supposed to make you tired. I had a paradoxical effect. My heart was pounding and when I would fall asleep, I would jerk and wake up.

I am going to try to take it earlier today sans the Elmiron and/or Elavil and see what happens then. I hate taking multiple prescriptions because you never know what's causing what. Argh!