Newly Diagnosed and scared

**Kim J123** · 03-19-2005, 12:26 PM

I have recently been diagnosed with IC. I originally went to the doctor because my primary said my bladder was falling. It was, but the the urologist also diagnosed IC. So I had surgery 6 weeks ago to have my bladder and vagina raised back up. Since then I have been in a lot of pain. At first it was surgury pain but that has past. Now it is bladder pain and I go to the bathroom about 17 times a day. It is so painful to hold it I cry when I have to. The doc is waiting until 8 weeks post op before she puts me Elmiron. I never expected this. I thought I would be back to work after 6 weeks doing my usual things. I am terrified to leave the house. I am not sure if the surgery aggrevated the IC.It is painful to stand or walk very far. I did not have these symtoms as bad before the surgery.I am startign to get depressed and fearful that I will never be the same again. Anyone else have a this problem?
Kim

***SharonA*** · 03-19-2005, 01:59 PM

Kim...First off, I want to

you to the ICN.

Have you been checked to see if you might have a UTI? If not, I would suggest that be the first thing you do. You can buy UTI test kits at most drug stores. They are not as accurate as the one a doctor would do, but it might give you an idea if that is what is causing your pain.

You really do need to see your doctor about this pain. See if you can get in to see her on Monday morning or call to see if you can speak with her tonight or tomorrow. She just might be willing to meet you at her office or the er.

If you are hurting when you are trying not to urinate, then maybe it is because your urine is too strong. Try drinking more water. That will dilute your urine and flush it out of your bladder quicker. Yes, I know, that will make you go more, but that is what has to happen to get the acidic urine out of your bladder. Urinating 17 times a day is not a large amount for most of us. We all seem to go more than non ICers. It goes with the territory.

I hope you begin to feel better very quickly...

**Katrina** · 03-19-2005, 03:11 PM

to the ICN! Why is your doc having you wait until 8 weeks post op to start Elmiron? Abdominal surgeries are often quite hard on the bladder if you have IC...and yours would be particularly hard. Many people have long flare ups from abdominal surgery. I myself have flared greatly from abdominal surgeries. It is quite common to have worse IC symptoms after an abdominal surgery.

Are you doing any treatment? I have found that with treatment I am able to get back to normal.

Have you tried the diet?

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/show...0935#post90935 Newbie kit from the oldies to the newbies

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.

IC does change things...but that doesn't mean you won't still have a happy, normal, fullfilling life. It does take some adjustment....but don't worry you are not alone and their is a lot of help out there.

**VickiB** · 03-19-2005, 04:29 PM

Hi Kim and welcome!

I'm so sorry you're going through this! It sounds like you are in a lot of pain, and becomming depressed & fearful are something most of us with IC have experienced. First, I want you to know that the majority of us do get our IC under control, and there is life with IC! The beginning, where you're at right now, is the darkest time. But things will get better!

The others gave you good advice. Do get checked for an infection because that can make your IC so much worse. Katrina mentioned the IC diet. That's the one step that made a world of difference for me pain-wise. The diet can be found in the handbook, the first link she gave you.

I don't know how it would affect your surgery so you should probably run this by your doctor first, but there are over the counter drugs that can help with the pain. Azo Standard & Uristat. Also, many find relief from Tums or drinking baking soda in water (1 teaspoon to a glass of water). The baking soda is not a good idea if your diet is sodium restricted for some reason. If your doc says it's okay, these might hold you over until you can get in for an office visit.

I hope your pain eases up soon!

Hugs,
Vicki

**kelly McC** · 03-19-2005, 05:30 PM

Hello Kim,
Welcome glad you found us.
I am sorry your having so much pain. If you have not had a chance take a look at the handbook it has a lot of information http://www.ic-network.com/handbook/
The diet can be helpful. Information on diet is in the handbook.
I would talk to your doctor about your pain level. There are many treatments available and many find ones that work for them.
Hope your feeling better soon
Kelly

***ICNDonna*** · 03-19-2005, 05:48 PM

You've been given some excellent advice already, but I just wanted to

you to the IC Network.

Sending warm welcoming hugs,
Donna

**Kim J123** · 03-20-2005, 03:49 AM

Thanks so much for all of you good advice. My doctor has done many urine tests they all come back negative. I have had blood tests, cat scan,cystiscope(?)and one other test with probes and a catheder that I don't remember what they called it. I am all tested out. I have been keeping a journal so I can take it to the doctor next time I go. I also ordered a book The INTERSTITIAL CYSTITIS SURVIVAL Book.
My doctor is a urogynocologist. I was wondering if I should switch doctors to someone who just is a urologist. I live in Kentucky does anyone know of a good doctor around Louisville?
Thanks again
Kim

**Portia17** · 03-20-2005, 08:35 AM

Hi

Is that all you got is just Elmiron.

Is he going to give you DMSO treatments. They seem to be working some for me

I also go to pain management and got like 5 prescriptions from them for pain and inflammation as my urologist only gives elmiron and anti-histamines.

Go figure.

You will get better with proper treatment

There is a light at the end of the tunnel

**Amyinagony** · 03-20-2005, 10:26 AM

Kim

Glad you found this site, it's a great place to receive information and support. My IC treating Physician is a GYN. So to answer your question about whether to find a Urologist, not neccessarily. I went to 11 Urologists before her. She was my lifesaver!! Give her time, (easier said then done when you are in pain, I know) this is sometimes a time consuming disease to find the right treatment plan. Some do very well on just Elmiron, some need more than that. Elmiron can take a while to work, so maybe if you call her back to let her know how much pain you are in, she will at least help you through that until she can find the right treatment plan for you. Everyone is different and respond differently treatments. The diet is a good thing to try. The book that you have is also good. Learn all you can about IC and ask all the questions you have. Knowledge is power.

I wish you the very best and pray for a treatment to work soon for you. Take care and visit often.

The one test that you are talking about with the probes, sounds like a Urodynamic test. I had one of those too.

**Kim J123** · 03-21-2005, 03:29 AM

WHat is DMSO? I am just getting started and will not start any treatment until next week when I go back to see her.
Kim

***Sarojini*** · 03-21-2005, 03:34 AM

to the ICN.

DMSO is a medication that is put directly into the bladder via catheter.`It helps many people with their symptoms. You can read more about it in the Treatments section of the Patient Handbook on this site -- http://www.ic-network.com/handbook .

**hoping4acure** · 03-21-2005, 04:39 AM

Hi just want to add my

I am so sorry you are having a hard time right now.

You have found a great site, and we are all here for you. We have all been were you are at right now. Please know that it will get better & to stick to the IC diet...This is very critical at first.

Hope to see you around the boards.

Louann

**berryjona** · 03-21-2005, 06:22 AM

Originally Posted by Kim J123

My doctor is a urogynocologist. I was wondering if I should switch doctors to someone who just is a urologist. I live in Kentucky does anyone know of a good doctor around Louisville?
Thanks again
Kim

hi, i just wanted to say your satisfaction w/ your doctor is a very individual, subjective thing. i was recommended to a gyno-uro because he supposedly knew all there was to know about the female area ... ha! he was horrible. i ended up at a regular uro by word of mouth. he's the 3rd one i've seen and has been the best so far. i just wanted to share my experiences. i think the credentials and area of expertise are important, but only to a degree. sometimes it's just trial and error. even bedside manner isn't as important to me as it used to be. now i'm more focused on results.