Please help

[oregondaisy]

I just found this message board and I am so thankful that I did.

I looked online a couple of years ago when I was first diagnosed, but I never saw the board. I've been getting Jill's emails but I think this board will be much more helpful.

I keep seeing different things people have tried. Are they all things you would need to have a prescription to get?

When I was first diagnosed, I ordered some books online. The one that was the most helpful is called Herbs and the Urinary Tract. I have found Red Clover to be helpful because it works as an anti inflammatory. Right now nothing is working because I have a new boyfriend and any time sex is involved, flare ups are constant.

Can anyone tell me what is helpful that is not extremely expensive? That Elmiron is really expensive and I can't afford it. My urologist is not helpful at all. He just wants me to come in for a UA all the time. It's hard to know when to go in, because the pain is exactly the same whether it's a UTI or a flare up.

I'll keep reading the board, but I'm having trouble getting it around right now. I'll get it figured out. In the mean time, if there is something I can do that is helpful, I would appreciate finding out. The things I see mentioned here I don't know if you buy online, or if they are prescriptions.

Thank you so much, Denise

[Jadia]

Hi Denise, welcome!

Without knowing which specific treatments you are speaking of it's hard to tell you if it's available with or without a doctor. Some things, like the IC diet, are recommendations for avoiding food that people with IC have found consistently cause flares or suggest because they do not cause flares. Even with the diet, it's a guideline and everything on it may or may not work for you. It's best to take it and then experiment for yourself by keeping a food journal that records what you ate and how you felt. This will help you tailor your diet to yourself and no doctor is needed to assist in that.

Some medications, like pyridium (which numbs the urethra to help with the burning during urination) do require a medication. But others, like Azo standard (which Donna taught me recently is a lower dose of the same medication that is in pyridium!) you can buy over the counter at many pharmacys and grocery stores. So simply, there are all levels of different things that have been used to get relief. Some things that work for one of us though, do not work for others. It's all very individualized and takes alot of self trial. These forums are a great place though to expose yourself to all the options that are out there!

One thing in your post that does strike me is that you do not feel your urologist is not helpful to you. Have you considered looking into changing urologist? One thing I notice is alot of people feel sort of stuck with one doctor, just because they were the first one they saw for an issue. I believe if you do not feel a doctor is providing you the service you expect, you deserve to find a doctor who will work with you and help you. It's your money and your health...and you control them both! Just like a department store, you aren't required to buy what you do not like, you can always look somewhere else!

[ICNDonna]

to the IC Network forums. I'm glad you found us.

There are many, many different things being tried by IC patients. The items available in the ICN Shop have all undergone some trials on IC patients so that's a good starting place.

I also highly recommend giving the IC diet a try. You'll find a link to the latest food list in my signature below. It's printable and is an excellent guideline for beginning an IC diet. Even after 36 years with IC, I find the list helpful.

It can be very difficult for an ICer to tell if it's a flare or infection --- my uro always checks my urine for infection at every visit.

If you aren't feeling confidence in your doctor, you may want to consider a second opinion. If you scroll to the top of this page and click on "Professionals" you'll find there are some medical specialists in Oregon listed. If you're near the Springfield group, I have found the doctors there to be very good.

Sending healing thoughts,
Donna

[oregondaisy]

no help from urologist

I can't change urologists because I live in a really small town and this is the only one available.
I went to another one 200 miles away and she wanted to look inside my bladder which i am sure would be extremely expensive. My urologist actually said it wouldn't do any good to look in there anyway. He would prescribe Elmiron
but it costs so much.

I take Red clover and that does help and so does Uva Ursi. I can't use Uva Ursi often though because it's supposed to be hard on the kidneys.

I looked online and bought some alovera that was advertised for IC and ordered that.

I have been on the IC diet for 2 years since I was diagnosed and read about it online.
Can you suggest anything else that is not super expensive?

[ICNDonna]

You might want to try Cystoprotek --- it's available in the ICN Shop and isn't horribly expensive. I know of several people who find it helps --- be sure to check the ingredients before you order it. I know anyone with a problem with shellfish shouldn't take it.

Warm hugs,
Donna