newly diagnosed, question about treatment?

[mary sarg]

Hi, I was recently diagnosed with ic a couple weeks ago. I am 27 yrs old, and have a mild case, mainly frequency and urgency with occasional pelvic pain. My doctor wants to start rescue installations 3x a week for 3 weeks, decreasing gradually. it seems as if this treatment is too invasive for a mild case and for a 1st time treatment? ( i did try 50mg elavil months ago with a diff. doctor, couldn't handle side effects) I feel confused and nervous to start this whole process. I would appreciate anyones thoughts/and or experience with this treatment. Thanks a bunch

[Roxie2007]

HI I haven't had the instillations.......but I agree that sounds like a very invasive treatment if you have just a mild case. Also, my dr. said that 50mg of Elavil is more for heart issues than an IC dosage. He recommends 25 mg. for IC. Maybe that would be much better for you......with out heavy side effects.....Good luck to you.....and Welcome! Roxie

[ICNDonna]

You might try the IC diet for a few weeks first if you're having doubts about what you're being told. Some find the diet is a huge help.

Sending healing thoughts,
Donna

[leelee88]

Hello and

I agree with Donna and Roxie, the diet helps so much and my opinion the dr started you on to high of elavil, I started on 10mg and worked my way up to 25mg and it helps so much with the pain..

And as far as the instills, I do not get them, but have heard they work very well for some people..

I am sure more people will respond..

[lnseagraves]

I also think that could be too invasive. I was diagnosed with a mild- moderate case myself at age 21. My doctor really emphasized the diet and put me on Elmiron. Both of those helped me a LOT.

[nyaseen]

I too was diagnosed with a mild case of IC (although in the beginning I felt as if it was the worse case of IC) My urologist started me with 25 mg of elavil and elmiron. I go to pain management for neurontin and vicodin. After 4 months I noticed a difference. Now after 6 months I feel as if it really has kicked in. It really is hard to take all this in when you first get diagnosed. But there is so much treatment that makes you able to function! Hugs to you and I hope you start feeling better. Nazareen

[patricia1]

I agree with the others. If you have a mild case I would not start out with the instillations. I notice you said you tried Elavil but could not handle the side effects. But there are other meds you can try. I dont know if you are on Elmiron or Atarax, but they are pretty much the standard when diagnose IC.

ALSO the diet can play a huge part in handling your IC. Especially with you having a mild case. Alot of times the diet alone can handle your symptoms. So if you are not doing it, you might think of.

Personnally I would wait on the instillations and try other treatments first. My this is only my opinon and all of this is your choice.

Good luck with all.

[soccermom32]

Hi! I am new too, just diagnosed last Thursday. I am 32 and am not sure what kind of case I have, I don't have frequency/urgency but rather pelvic pain. I was put on Elmiron - 100mg right now, building up to 300mg. I had my first instillation of heparin, lydacaine and sodium something or other (can never remember!!)on Monday. I go again tomorrow. I am getting 2 a week for 2 weeks then once a week for 4 weeks. My doctor pretty much made it like the rescue instillations were protocol and said he has had great success with them. If you just have frequency/urgency, I would think eliminating coffee and chocolate and caffeine would be beneficial for you. I am on the IC diet, but haven't noticed much of a difference yet. I do pee less since I'm not drinking coffee though Like I said though, frequency was not an issue for me.

I know the other treatment DMSO or something has some bad reviews. Is that what your doctor wants to do, or just the rescue ones?

[humpieumpumkin]

I agree with soccermom find out what kind of instill they are. I personally, refuse to have DMSO or whatever its called because although my signature shows all kinds of meds I am very concered about what I put into my body...Industrial Solvent at any dilution isn't something I will ever allow.

Erika