New to IC - In extreme pain!!! Please Help

[KC_24]

I have been having problems with my bladder for 7 years now. I have finally found the answer... I have IC, I was happy to finally know what was going on, and I was eager to start treatment, and to get better. I just had my first DMSO treatment on the 20th of Novemeber. Immediatly after I felt better, almost the next day, about a week after I started having the worst pain I have ever felt. I was up all night with no sleep I called my Uro crying because I didnt know what to do. They told me to go to the hopsital, they thought I might have a serious infection. After 5 hours of waiting the ER Doc told me that I did not have an infection, and that it was just an IC Flare. He sent me home with a few morphine pills, and that was that. I have been in pain ever since, I am getting up 4-7 times a night. I have taken tylenol, t3's, tramecet, anti-inflamitories, muscle relaxors, opium supositories.... nothing is helping for the pain, I feel like giving up at times. I was in pain before I went to the URO, but since he has done treatment, I have been in the worst pain in my life... I just dont know what else to do. Anyone have any suggestions? Different meds I should try? Anything?

[allipal]

Welcome to the site!

The diagnosis of IC is very frustrating because there aren't many physicians who know how to treat it effectively, and also because all of us respond differently to treatments. Have you started the IC diet yet? It's not going to cause an immediate difference, but over time should lessen bladder irritation. I think we have a "Sticky" post on here somewhere about what to do during a flare... things like heating pads, hot baths with baking soda, hydration, bladder anesthetics (pyridium or Urelle-- talk to your doc first), relaxation techniques, etc.

[leelee88]

I am sorry you are dealing with this. I would ask your Dr if he would prescribe you some Urelle, Prosed Ds or something that could help calm the bladder down.These meds change the color of your pee but they do help with the burning pain and spasms.
You could also ask him if he could JUST do a rescue instill with Lidocaine, sodium Bicarb to calm the bladder.. Also are you following the IC diet?

I really think you need to talk with your Dr more about this, so he can help you get through this and out of this massive flare you seem to be in..There are meds out there that can help, sometimes it just takes awhile to find the ones that work for you..

Good luck and please keep us posted!!

[elamar]

dsmo is a tricky med for us. For some it works great. You really have to be careful about the ratio of dsmo used in the instillation cocktail. I went through 7 weeks of dsmo cocktail instills and got progressively worse with each one. My new doctor thought I was crazy for using the dsmo - it is considered "old school" treatment by many doctors. She told me the stuff was awful and would never use it on her patients. So it is actually quite controversial. Some on these boards have had good results with it. Others of us had bad reactions. If it makes you worse, it may just not be the right mix for you. Someone else can probably post about the proper ratio that should be used if you are going to keep using it. I honestly don't know what it is, but I think there is some sort of general rule that the instillation mix should be less than 25% dsmo. Turns out doctors were using over 50% in their mixes which were hurting patients. I hope someone out there can post about that subject and get you the correct info on it. Good luck to you.

[amaranthe]

:welcome: to the ICN! So sorry you have IC too! My Dr. never did the DMSO. Mine did rescue instills instead in his office until the Elmiron kicked in. However, the instills helped me so much, that he taught me how to do them myself so I can do them at home as needed. They are very soothing, and contain Lidocaiine or Marcaine to numb the bladder and also have Heparin, and Sodium Bicarb. The Heparin coats the bladder and the Sodium Bicarb helps alter the PH, making the urine more alkaline than acidic. I would ask your Dr. about trying these.

I defiantely would also ask for an r/x of Urelle, Prosed, Urimar-T or Pyridium. I take Urimar T. It has an antispasmodic and an antibacterial to help ward off actual infections. It also has something that turns your urine blue and helps numb the bladder and urethra. Until your Dr. r/xes something, you can get AZO Standard at most drug stores over the counter. It can be a lifesaver when you need it.

Some ICers also benefit from OTC or r/x antihistimines and antacids. If you think it is something you have ingested that caused the flare, drinking a few teaspoons of baking soda in a glass of water can really help too.

I know things seem hopeless when you are hurting, but please remember that most patients DO get better! But, the bad thing is that it can take a few months for lots of meds to really work and several weeks for the IC Diet to really make a big difference, (though you will notice you will start feeling better as you figure out your trigger foods.)

I am glad that you found us here, though I am so sorry you are in such pain. But, please stick around and read all you can. There is a wealth of information and support here. I learned so much more here than I EVER did from a Dr. about things to do to help myself.

Kind regards,
Amaranthe

[kadi]

Hi KC,
I'm sorry you're going through so much. Hopefully you & your doctor will be able to come up with a treatment plan that will help.

I don't know if you're on the IC diet, but it's a really important part of most patients' treatment. Here's a list of what is usually ok & not ok to eat.
http://www.ic-network.com/diet/dietcheatsheet.html

It's really important to become a label reader, because some foods listed as "ok" might not be if they have acidic preservatives in them. One of the worst flares I ever had was triggered off by a tortilla! (Turned out to have 3 types of acid preservatives in it! Ugh. And it looked so innocent...)

You've gotten some really helpful suggestions on things to talk with your doctor about. Do try the diet for at least 1 month to see if you can reduce your symptoms that way. I found that none of my medicines are worth anything if I'm still eating foods & drinks that irritate my bladder, so I still follow it very well...

Let us know how things go for you, ok? We've all been there & are wishing you relief soon,
:kissing:

[Zygala87]

KC I don't what to tell you except to report what worked for me. Since we are all so different, what worked for me may not work for you. First I went on the IC diet big time and stuck to it. Next My OBGYN did a hydrodistention of my bladder. It seemed to stretch it and let me go much longer before I had to void. My PCP gave me pain pills and told me to use them to stay ahead of the pain when I was in a flare or going to do something that I know will cause pain like a long car trip. I take Elmiron 100mg's twice per day. It was a long slow trip but I have mostly very normal days now. It's been two years. I try to avoid stress (flare big time) I don't move or carry heavy things. Long walks like through a big store and my bladder says "I'm here and ready to hurt you greatly". When I feel pain coming on, I lay down on the couch with an electric blanket on. I watch TV and it seems to go away. Maybe mind over matter. This is just my experience. I am sure others here can give you better advice. Stay with us. You will learn much. I do. My heart goes out to you and I hope you find relief soon. Big Hug, Ziggy

[april ryan]

KC welcome!

I bet you are getting very anxious; the diagnosis is a relief because you know what are you fighting against, but also a very big thing to digest. Your body's reactions aren't still clear, as it is not clear how to control this.

The first thing to do is trying to relax emotionally. It's not that easy, in fact, it is damn tough. But if you don't do so, your fear will make your pelvic muscles contract so much that it is impossible for the inflammation to heal. Inflammation is your bladder response to this tension - according to some theories - because the body is thinking that it's fighting some kind of infection.

If you had relief from the DMSO the day after it is a good sign, just be more confident that they'll help, and give it more time, because it might take a while for them to kick in.

My personal emergency strategy for pain is a simple hot bath. It works because it RELAXES my muscles.

I've been much better since I took a more positive mental attitude..

Let go stress and prepare for healing. :)

Hugs,
April

[KC_24]

Thank you all for your suggestions. I just saw my Uro on Monday, he told me that I have severe IC and rated it a 9 out of 10 of how bad it was. I work for a Gyne so I know he is a good doctor, I do have faith in him. I am going back in for DMSO treatment Dec 30th from then he wants me to have the treatment every 2-3 months, he says it is to severe for only one treatment to work, he uped my meds and patted me on the back telling me that things will get better. It was really really emotional for me, because I have been dealing with this for soooo long, I finally feel some what validated for what I have been through. The news I got was not good, but I know that there is no way I will get through this with out a positive attitude. Missing work for the surgeries really sucks too!
I am still feeling a lot of pain, and it is hard to stay positive when you are suffering so much. I am going to try and see my mothers doc on the weekend. Has anyone ever been to a pain clinic? any opinions on that?