Need advice please

[DianeRN]

I've been newly diagnosed with IC and really didn't know anything about it until then. I just had my 5th bladder instill of heparin, sodium bicarb and lidocaine, although lidocaine was only added to the last 2 treatments. The pain is no better, in fact maybe worse. The doctor wants to send me to pain management, but I have to wait until my records are sent there, they review them and then they call me to schedule an appt. I was in so much pain yesterday, I called the doctor for pain meds and he did call in some vicodin, but it doesn't really help. I follow the diet, tried the heating pad, etc. I don't know what else to do. Should I go to the ER? Would they do anything else? Could it be anything else besides IC or is it normal for IC to feel this horrible? I'm getting so depressed. I want to get out and do things with my family, but end up just sitting around the house everyday. Any advice would help. Thanks.

[SharonA]

Have you been checked for a bladder infection? Infections are very common after being catheterized, but being an RN you already know that. If this has already been done and you are not getting any relief from the Vicodin, I think it would be wise to call the doctor and let him know that the pain med is not helping and see if he will call in something else for you.

[crazy_beautiful]

I was thinking infection too.... I do hope you start to feel better. with it being the weekend you might want to the after hours clinic and be tested.

[elamar]

For whatever reason, whenever I was cathed or something was put into my bladder (I was given DSMO cocktails) my conditon always worsened. It seems if my doctor "tinkers" with my bladder, it just makes things worse. I just have to stick to oral medications, creams applied to the outside and diet. It took me a good 6-8 months to get over the hydroextension and dsmo treatments. What are your symptoms? I had overwhelming urge and frequency. I was able to treat that with high doses of ditropan and urelle (generic forms of both). None of the doctors I've seen (4) would give pain medications. I now get 2 mg of valium to take 3 times a day and ultracet as needed. I still have never been able to get opiate pain meds. If the instills are making you worse, maybe it's just your bladders way of saying it's not the right treatment for you. Or maybe you can switch the mixture. I could not take the oral elmiron. I know some here have it put in their instills. Maybe that could help. I'm sure others can chime in on what they use in their instills. I hope this helps. Good luck to you.

[Julie B]

Hi there,

I am like elamar....any jockeying of my bladder (for example during pelvic exams) puts my bladder into fits, even if I have been feeling just fine. The only thing that gets me through are eating very safe foods, warm baths in Epsom salts, and lots of rest.

If you are a new patient, I also suggest keeping track of everything on a calendar. You never know when you will detect a pattern....

Gentle hugs..........

[DianeRN]

Thanks for everyone's quick replies. I know I don't have an infection because I was just tested on Thursday. My doctor said my only option was instills with the cocktail he's using. I asked about Elmiron, but he said that wasn't an option for me. I'm going to talk to him again this week. My symptom is pain. Frequency and urgency are only when it gets really bad, but usually the pelvic pain is horrible, sometimes goes into my lower back and R. flank area.

[dg2901]

Diane--I'm curious to know why your Dr told you Elmiron wasnt an option.

:hmm:
Diana

[DianeRN]

I'm not really sure. He said the bladder instills were the best option for me and he was certain they would help. I sort of think the other members are right about my bladder going into spasms as soon as a catheter is introduced, but as I read other members blogs, a lot of people get results from Elmiron. I know it's expensive and has some nasty side effects like hair loss, but I'm losing hair already from stress. I''ve also got IBS, bursitis, migraines, TMJ, joint pain, the list goes on. I'm at a loss as to what to do next and am due to return to work in 2 weeks. I'm not sleeping at night and everything is stressing me out. I'm a nurse and should know some of this stuff, but I'm totally at a loss.

[crazy_beautiful]

I would ask about the Elmiron again, and simply say I want to try it, please keep in mind it can take 6 to 8 months before the bladder lining starts to heal for you to feel any help from it. I used it for a very long time my hair loss was only noticable to me, but after several years I started getting serious headaches. I have considered asking to try again..

[Briza]

Hi Diane
Hi...so you were tested, just yesterday (Thursday) for UTI? Did you have the instill right after that? I know some people here who get instills take a preventative antibiotic whenever they have an instill, just in case. I don't suffer from UTIs so I don't know how fast one could start brewing after being cathed??
Anyway, on to the other stuff you mentioned:)
I have not had instills but know many people get relief from them, and have read that some people sometimes get increased symptoms before they start to feel better and and for others the instills start relieving their pain right away. Others can't tolerate the cathing involved.
What a great profession you have as a nurse, but a tough one to have along w/ IC...I have quite a few nurse friends where I live and NONE of them had heard about IC until I told them about it. So that is not unusual I think that you may not have heard of it or what to do for your symptoms before being dxd!
I have no idea why your dr said Elmiron was not an option for you. How were you dxd? Maybe his patients have not had luck with it, some do some don't, but if his patients haven't then maybe he is not that big on prescribing it. ??? Just an idea. However if you do some research on it, it seems you have already, and want to try it, then definitely you should ask him directly why he doesn't think it is an option for you.
Another thought is that some drs like to try or start an IC patient off with only one treatment or med at a time so you can tell what is helping what is not, and what (if any) side effects you are getting from each med/treatment. So maybe his protocol is to start off new patients with instills and see how that goes. If they are not working for you there are sooo many other meds to help relieve your symptoms as well as the IC diet.
Pain meds are particularly strange in that what works for one person doesn't work for another. For example, Vicodin doesn't work for me AT ALL, just made me itchy and b*tchy, but one tab of Tylenol 3 works great. Many patients get great relief with Ultram w/out side effects but for me it caused dizziness so bad I couldn't even think about whether it was relieving my pain or not! Others get great relief with a low dose of MS Contin twice a day...for me it did nothing.
Anyway, just some thoughts...I hope you find relief for your pain soon! Many people use heating pads and get great relief...I'm an odd one...I respond better to cold therapy on my pelvic area as well as for bladder referred lower back pain. Best wishes<Bri:)

[Nonna]

I would never tolerate the idea of instills and many IC'ers I know won't either, even though I know there are people here who swear by how much they have helped. But if you aren't having a good experience, I would quit doing them and be assertive about wanting to try some other medications. The ones that were tried on me to start with were the usuals: *(but in low but gradually increasing doses) elavil, hydroxyzine, lyrica, and elmiron. I don't recommend starting this way because I could never tell which med was working and which giving me side effects...but my doctor believed in hitting it with everything I could. My next doctor was very opposed to all of these meds and just wanted me to try Elmiron and vicodin for pain...because of some stomach problems that I now know were not related to the Elmiron, I went off of it so I'm thinking that I'll try again soon. In the meantime I use pretty much nothing but vicodin and I have to use it religiously on schedule when I'm having flares because if I wait for the pain to come back, it doesn't respond and I end up chasing the pain and then needing something stronger. If I use it as prescribed, it really works for me. But I'd like to be free of pain meds so I'm going to try going back on Elmiron soon.
Hope you get some relief quickly. It's really worth seeking out a pain specialist or very sympathetic doctor willing to work with you. I've found that it's often not the urogynecologists who are the best because they 're great at operating on things they can fix, but often don't have the patience or bedside manner to deal with IC which is a long-term, touchy-feely, work with the patient kind of thing. Stay in touch if you need support, My best, Nancy