please help!

[mike27]

Hi I have been diagnosed with IC about a year ago thou i had it for about 2 years.Recently for about 2 weeks I have had very very bad pain in lower back right side pain,that makes me want to cry!!.I have been to the ER 2 in the past 2 weeks they did 3 ct scans and find nothing but inflammation what can i do about this pain please help me.

thanks in advance

also I would like to have some recommendation on urologist that know/deal with IC my urologist doesnt realy know much about it.

[Betsie]

Hey Mike,

Sorry for the dismal symptoms right now. have you been put on any type of treatment plan? Especially one that includes Elmiron? Without knowing your area it's hard to send you to a better source, but hopefully u have visted the patient handbook at http://www.ic-network.com/ - i don't know the exact path, but that is the main page. Tons info regarding diet, Dr listings, treatment options and my favorite a link to Dr. Moldwins book, which is an ICers bible. It is a must read. The ER is often not very helpful when seeking help for IC....though in dire pain, etc it is wise to r/o other things.

Please push forward and try very hard to focus on an IC specialist, if nothing works fast in that arena, ask your GP if he can treat your pain and work to find a good uro team.

So sorry for your discomfort, you will get lots of tips here later, one thing is posting your area, as someone here might have a close by facility/hospital they can refer you to. In the meantime check out the listings in the handbook.

Sometimes you can google urolgist + your city region and get a decent listing, which will then usually list their specialties, IC being one for some of them.

Good Luck and a happier new year to you!

[mike27]

Hi thanks for reply I am on elmiron 100mg 3 times a day ,hydroxyzine 50mg at bed time ,
imipramine 3 times a day. and none seem to help me.

[ICNDonna]

The Patient Handbook is at http://www.ic-network.com/handbook --- you'll find information there about various treatment options, including the IC diet. If you're not following the diet, I suggest you begin right now.

How long have you been on elmiron? It can take up to six months or more to be effective.

Sending healing thoughts,
Donna

[Betsie]

When I went a bit backwards in my success with treatment options, I visited a well known Dr. He is a specialist in the treatment of IC, no longer practices, but is pursuing new research in the treatment. He has been a guest lecturer here as well.

Much to my surprise he doubled my elmiron from 300mgs a day to 600mgs a day and I always remember that he was emphatic about the safety of it and that he often puts his male patients on a triple dose. I am not sure what the gender difference would be, so I just assumed body/muscle mass...like rxing a toddler vs. and adult. Just another thing to throw out there. A few of us here do have the higher regimens and many take 400mgs. Add this to your list of questions...it may help you, it was the miracle for me.

[harold rosen]

hi if i can help let me know i live in st.louis mo and i have the top doc in this area who studys ic and gets grants my 1st doc gave up and i have been seeing him for about 6 months and i have improved :bow: and i have had this thing for about 3 yrs and lot of proceedures last one 2 weeks ago he went in there and shots satrriods in my bladder this is his 2nd time doing that and this time sceems to help a lot except for how many times a night still alot harold :bonk:

[mick]

Mike.

have you tried changing any parts of your diet along the recommendations here at the website or in Dr. Mouldwin's book? I have had IC for four years but I was only correctly dianogsed this year. After having bladder surgery I am on the same drug cocktail you mentioned. I find that if I closely monitor my diet then i tend to receive more positive effects from the medication. If I go off the diet with something very acidic then I will get IC flares that sometimes create so much lower back pain I just go to tears at night.

Let me know if you have more thoughts, questions or concerns. there are not many men that post on this site and I would like to hear from other males with similar problems so i know more what to expect.

mick

[bunny]

Kidneys checked?? Does ice or heat help? What does your uro say?

I have the best luck with my General Practioner.

Nancy

[mayray518]

are you certain the pain is caused by IC?

[SharonA]

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

[tired of this]

Welcome to the Board. Hope you are doing better. Go back to the uro as ER visits rarely seem to help. I can't help specifically as I haven't gotten the lower back pain, just testicular pain. Good luck.