my first post

[jennymm]

hello
I have had ic since I can remember... probably 5 or 6 years old. I was officially diagnosed at 29 yrs old. I am 38 now. I can't remember any specific incident occuring that triggered the painful bladder and urgency/ frequency. I have just always had it and it has become increasing painful.
I have tried almost everything except interstim. elavil at 50 mg helped take the edge off my pain for ten years and then suddenly i started to get manic/ panic attack/ racing heart when I took it. So I stopped elavil about 6 months ago and have been going downhill seriously ever since then.
the pain is constant, I rarely sleep more than 1 hour at a time and that hour is filled with horrible nightmares about my bladder pain. I can't escape it.

Thursday I will try elmiron instillations. All other instills did not help. I have tried about 20 different meds with no success. I just started elmiron capsules
tonight for the second time. First time I had severe stomach cramps. This time I will try it out of the capsule.

I am trying to keep hope. I really don't want to do interstim but feel that I might not have a choice.
I am so tired. All I want is to have a tiny bit of relief. I have a 3 year old and all he knows is that mommy's bladder hurts. It is a part of his life as much as it is mine. Its all just really sad.
Any words of encouragement are appreciated.
thanks for listening
jennifer m

[earthlady]

Sorry to hear you are having so much trouble right now. You mentioned that you're having side effects now from Elavil. You may want to try another type of tricyclic that possibly won't give you as many problems. I was taking Surmontyl which is an oldie but doesn't seem to have as many side effects as Elavil. It's also a tricyclic but is a bit milder, and from what I've read it is the only one that doesn't disrupt normal REM sleep patterns. I was never able to take tricyclics due to the side effects, but this one I was able to tolerate at low doses and it did help my bladder. I hope you find some relief soon as I know how painful this condition can be.

[Jinny Jean]

Welcome. The best advice to you that I can give ( and I have been doing this all day because I was recently flaring) is go and read ALL of the success stories (or leave some for a rainy day ) Go in to the forum `success stories` go all the way to the bottem where you wil see a drop down box. Put decending and from the beginning, and then curl up with a heating pad and 3 liters of water and read, and cry. This helps me tons when I am feeling down or flaring.

Hope you find hope.

Jenn

[jennymm]

thank you very much. I am going to ask my doc about a different tricylic.
I am going to start reading the success stories today
thank you
jennifer

[SFGirl]

Welcome to the forum. I am sorry to hear that your current treatments are not really helping.

I initially had bad stomach issues with Elmiron, and I get acupuncture and it alleviated by stomach issues enough that I am now able to take Elmiron. Just something you can try if removing the capsule doesn't help.

Also there are tons of pain meds out there - Lyrica and neurontin for pain. Also, other anti-depressants like Effexor or Cymbalta, etc.

I hope you find the help that you need! Hang in there. You're in a tough spot right now, but I am sure that with the right treatment, you will get better.

[jennymm]

thanks everyone.... sometimes I fell like I am my own doctor and I need to tell the medical staff what I want to try ( as far as meds go).
tomorrow I will try a different instillation ....either elmiron or something my nurse pract. recommended.
maybe i will ask about cymbalta, SF Girl, did that help you??
thanks again
jennymm

[SFGirl]

I know what you mean about having to be your own doctor. You probably have to be your own advocate =(

Cymbalta did not help me because I seem to be quite sensitive to anti-cholinergic drugs. With that said, everyone is different, and what doesn't work for me can work for others. I'm sure that if you a search on this board, you will see tons of posts where Cymbalta has helped.

Another drug that didn't work for me was Topamax. It has seemed to help others with pain though.

With IC and many other conditions, it can take a lot of adjusting to find the right treatment...and even when it works, you might have to readjust months later.

I think find the right team of doctors is crucial. I've been sick with tons of things for 4 years now, and finally I'm assembling a good team of docs and things are starting to move along. An urologist is important, but an a good gyno, PT, and pain doctor can also be important too.

Good luck!

[Linda May]

I wish I could add to what was allready said but here is a

[jennymm]

just got back from my appt. I tried a different instillation... mucousa(spelling?) with marcaine and sodium bicarbonate. Doesn't feel fantastic but not worse either. I will alternate that with elmiron instill twice a week for a few weeks.
also, starting a more gentle amitriptylin style drug. nar- triptylin( again spelling?)
guess we' ll start another new adventure.
I pray this helps alittle.
thanks for the support. it really helps.
jenny

[dyno]

Some people who either can't afford Elmiron or react to it have tried Glucosamine/MSM. It is suppose to help with the bladder lining similar to what Elmiron does.

I myself have tried it and do use it. I buy a kind that have no other additives at all.

Also before you decide anything about Interstim if you are considering it, read both the successes and failures. There have been some serious life changing problems for some with the Interstim implant as well as some it has helped.

You just need to make sure you understand the risks if you decide to go that route.

Hugs!

[leelee88]

I agree with Jolene.
MSM/Glucosimine really helped me..

Hang in there things can get better.. Hugs