diagnosed but no relief

[StephanieS]

I have just recently been diagnosed after two years. I think I have had it since 1998 but oh well now they know. I have had 2 bladder stretchings and have been put on elmiron and urispas. March 9 was my last stretching and I have had bad pain since. The doc says it is due to irritability of bladder and it being so sensitive. In 2004 when I had procedure done I felt great for at least 6 months. I work a lot but when I am home i am exhausted and need to either be in the tub or heating pad at full blast on my side or between my legs in groin. I feel like no one believes me and realizes how painful this is. I am not due back to urologist for about a month and don't know if I can wait that ling but he is saying the elmiron can take 3 months....Can I satnd it for 3 months? DO I HAVE TO? Anyway I am happy to find this site but I feel depressed with the outcome of my diagnosis as I thought it would be better now that they know.

Stephanie S

[tigger_gal]

hi steph, welcome to our boards.. elmiron can take as long as 6 to 8 months to work. it all depends on your body, we all are different with meds and foods. you can ask your doc about hydroxizine, and elavil. hope you start to feel better soon.

[ISONormal]

Steph, the Elmiron really works for some folks and it can take up to 6 months to work. Give it a shot. Heck, give everything you can think of a shot. Personally, bladder stretchings don't make much sense to me for IC...hopefully he's doing it for another reason? What pain meds are you taking? If none, get some! How about Elavil? It can be great for pain. If that doesn't work, try opioids or other meds, like Neurontin or other things that people take (look at our signatures to get some ideas).

[beentheir]

i was diagnosed with ic about 2 years ago , i think i have had everything done to me and it hurts me so bad that others have to go through this same thing to and then again it's a releif because i thought i was going out of my mind , i am constantly in pain. i know how everyone feels i about died with this ic . i'm just now beginning to be able to talk about it. i just would like to help others if i could,and i need help to , i just need freinds that knows what i'm going through.i want to tell everyone that i simpathize with everyone that has to go through this kind of torcher. your freind beentheir

[ICNDonna]

My suggestion would be to call your doctor and ask for something to help with your pain. It could be that you have developed an infection; sometimes it's difficult to tell an IC flare from infection.

Are you following an IC diet? You'll find it in the Patient Handbook (link at the top of this page). Diet can be extremely important in keeping the IC under control.

I am one who is helped by hydrodistentions and I had #40 on February 23. If it's going to help you, you should be feeling some relief soon.

Sending warm healing thoughts,
Donna

[Briza]

Steph
Are you on any other meds beside Elmiron? As the others mentioned above, there are some meds that you can suggest to your dr that may give you faster relief while waiting for the Elmiron to kick in. Elavil and pyrdium work very well for me, and an occasional painkiller (tylenol 3). Read up on these if your dr has not offered them to you, for whatever reason. Sometimes we have to be very clear about what we expect from our urologists. Some are not very experienced in treating IC. Welcome and best wishes.

[Katrina]

:welcome: to the ICN beentheir and Sreph.

As IC gets diagnosed earlier sometimes Elmiron starts to help faster but many times it takes 3-6 months or longer...some doctors do Elmiron instillations to give it a head start. Also big thing on Elmiron most side effects are from the capsul!

Anyone can feel free to contact me if they need a friend! If you click on a name you get four choices one is profile where there are options to start a chat if you yahoo, aim, or msn...you can start a chat with me. One is Private message....you can private message me if you would like to talk but don't like the other options.
:grouphug:

[rosesitty]

Hey Stephanie - Everyone is correct, it takes Elmiron a good long time to see if it works, but remember it doesn't work for everyone. There's no harm in trying, I'm doing the same. I was hesitant, but I'm on month 2 and going to give it a while longer. I'm not noticing any difference, but we'll see. Look for three main side effects 1) GI (which usually can be eliminated if you take the med out of the capsule 2) hair falling out 3) elevated liver enzymes. The last two are rare, but you need to be aware. You should ask your uro about some other meds to take in tandem with the Elmiron. The ladies gave you some good suggestions...Elavil, some kind of antispasmodic if you're having urgency and frequency, some kind of antiseptic, like Urelle or Pyridium, an antihistamine like Atarax or OTC Claritin/Benedryl. There are things available to you that can lessen your pain and discomfort. I know it's frustrating and depressing...I guess knowing sometimes can be worse. Just remember, we're all here, going through the same thing, offering support to one another...
Stephanie

[StephanieS]

Thank You everyone for your suggestions. I am on Urispas for spasms and on Toradol for the pain. I can't take any narcotics/analgesics as I am allergic to them except Demerol. The Elmirol is wreaking havoc on my bowels but I will stay on it for awhile to give it a shot. Yes my Dr. did do a bladder stretching as a therapy for my IC. I have had it done twice now, in 2004 and just this month. The pain is unreal this time. I had been in emerg for 3 nights following getting pumped through with demerol gravol and toradol IV. It did help but I can't sit at emerg every night. They will think I am a junkie...LOL. When I see everything that you all have been through I am scared to say anything to my doctor as I do not want all the procedures as in bladder instillations. He is also not very supportive for the pain meds just anti-spasmadics.

Take care all,

StephanieS :grouphug:

[Sarojini]

:grouphug: I'm sorry you are going through all of this. It sounds like the others have given you some good advice already, though.

The diet can be very important, as Donna said, and I know the instillations sound scary but they really aren't too bad; in fact, I do rescue instillations with heparin, sodium bicarbonate, and lidocaine at home! You might eventually consider these since they have helped many people.

I hope you find relief very soon.

Oh -- my grandmother and some of my dad's family used to live in St. Louis-de-Kent, New Brunswick, so I've visited your province before and think it is great :)