Newly Diagnosed and desperate...

[Melody41]

1st I am so thankful that I located this forum. I am newly dx'ed with IC. Little background. I have fought UTI symptoms for years. 90% of the time testing showed negative for infection. Always same...Severe burning, frequency, and occasionally going 16+ hours with no urge to go. The last 1 1/2 yrs I have gotten worse to the point that it was literally ruling my life. Never could make plans..Constant daily burning..I have kept the AZO company stocks up I can bet ya.
I started thinking maybe it was due to ____ (fill in the blanks as I am sure most all of you understand). I weaned off medications which was hard considering 12 yrs ago I was injured at work and became disabled. Weaned off the painmeds that kept me able to 1/2 way function, weaned off caffine, stopped smoking..the list continues however no relief. Out of the last 3 cultures, 2 negative and 1 tested for Entercoccus. Fast forward to having a procedure done. Had a DMSO instillation with hydro-distention. That was August 12th. Here is where the problem increases.
Since 2 days following the procedure, I have had some major issues. Not sure if any connection but hoping someone will read this and know.
I broke out in a rash...No pattern just random places. Severe itching which led to more itching and spots. Went to dr and since I cant tolerate oral steriods I began getting injection of steriods that in 90% of ppl counteract the problem. Well, to date I have had 8 injections plus an boatload of anti-itch pills. If anything its worse. All they can tell me is its systematic not topical. I an in agony. It covers 75% of my body. Seems to me that if it were related to the DMSO it would be fading by now surely...however I have had no changes to diet or products or meds. Has anyone EVER heard of this or is it a coincidence? I cant get into a dermatologist for over 2 more weeks and between my previous health issues, the IC and this I am about to lose it. I have been to the ER 3 times all to the same issue...steriod injection, my regular dr...steriod injection and cream.
BTW the procedure I had so far has not helped, all I really got was more pain, bleeding when I pee for over a week and this god-awful rash which may just be a coincidence.
Anyone have ever heard of this ever happening? All my uro dr did was call my regular dr and inform them what meds was used in the DMSO cocktail. BTW I am pretty sure it is not anesthesia related as they used the same meds to put me to sleep that I have had previously (had 18 surgeries to date). THANK you in advance for any advice or just reading this novel. Sorry but I am at the point to where I am desperate.

Melody

[NancyB]

Dear Melody -

Sorry you are going through such an awful time. It is good you are going to see a dermatologist in two weeks. Hopefully, he/she will be able to help you.

NancyB

[mlzippy7]

Hello :welcome:!
I am so sorry to hear of your pain and suffering!
I hope things get better for you soon!!

[SharonA]

Melody...:welcome: to the ICN...

You certainly are going through it, aren't you. I am so sorry. I have no idea what could have caused the rash other than an allergic reaction to something you have taken, have eaten or if you changed detergents, soap, shampoo, etc. I really am glad you are seeing a doctor about it.

[hdb1982]

I don't know much about DMSO. Does any of it absorb into the body or does it stay localized in the bladder then you void it out?
I am sorry you are having such a hard time. Please keep faith that you WILL feel better. It is all a matter of finding the right combination of treatments. It can include medicine, physical therapy, natural remedies and many other things. Some patients benefit greatly from speaking with a counselor. This is very hard to deal with on your own. We are all here for you and will help you as much as we can with our own personal experience. IC is so difficult b/c there is no one patient who responds exactly the same as the next person. Wouldn't it be great if there were a treatment plan that worked for each of us!!!! Make sure you feel not only comfortable with your doctors but also confident that they are able to help you. Don't settle for any answer or explanation they give you if you don't feel what they are suggesting is right. No one knows our bodies as well as we do. Some docs will get frustrated when we don't respond to what they have tried. Some will simply tell you there is nothing else they can do. Do not accept this. There are new things coming out each and every day. You will never run out of options. You just have to be persistent and be your own best advocate. Any IC veteran will tell you that the beginning is the worst. Everything is so new and overwhelming. You are trying to figure out what works and what don't, what your triggers are, you are adjusting many aspects of your life. What you eat, drink, what you do for fun, your sex life. It is normal to feel like you are mourning. You have to give up so many things it seems. You feel like you not only lost the life you had but that you are not the same person. You are the same person, you just have to change a few things, you are still you, just with limitations. If you want to talk to someone you can pm me anytime. I have had this about 3-4 years. I also have Endo, IBS adhesion disease and a little girl I am trying to raise. I felt all of these different emotions at first and it was very overwhelming. I felt so much better once I found this site and everyone was so helpful. I asked so many ?'s at first I was afraid people were starting to get sick of me, which of course they never did. Everyone was so kind and tried so hard to help me. Sometimes just being able to vent and when someone says "yeah I know what you are going through" and for once, yeah they do know. No matter how much support you have from friends and family it is not the same as having people who truly get it b/c they live it everyday, just like you do. Please feel free to PM me. I don't work outside the home so I am always around somewhere. Best of luck. And :welcome: to the ICN!!!!!:grouphug:

[Melody41]

Thank you all for your replies. I was having a very hard time this morning when I initially posted. I hate feeling down but sometimes I am like ENOUGH! I can handle 1 disease (I dont like it but could handle it much better) but at present time I have many. Seems like once I was dx'ed with 1 it was a snowball thing.
Little history...In 1997 I was healthy, working way to many hours and ignoring my body signals. I was hospitalized with a kidney that just shut down. No problem healing from that. Hospital stay and meds. The next yr I had a simple surgery to fix a repetitive injury...That was the beginning of the next yrs of he&&. From healthy to disabled. I have current dx of: CRPS/RSD, FMS, IC, DDD, Myofascial syndrome, Neuropathy, poly-neuritis and several herniated disc. Multiple surgeries for endometrosis, hystrectomy, abdominal blockadge, gallbladder issues plus 4 hand surgeries and now the minor IC surgery. Like I said earlier to date the count is 18. I guess I was somewhat lucky, I was given my disability with no attorney within 2 weeks of filing at the age of 30..I am now 41.
Having chronic pain for many yrs, I was afraid the meds were causing incrbladder issues so I weaned off a strong doseage of pain meds to see if anything helped. Guess everyone knows what happened then...Big increase of pain from both IC and other pain issues.
I guess I just got down that a procedure that I really thought was going to help ended up with a full body rash thats getting worse.
There have been no med/food/soap/laundry changes or anything different than the procedure so thats one thing that stumped me.
I am glad that I finally have a little answer on the kidney issues tho as I was about to lose my mind with that. No pattern..just severe burning daily...sometimes frequency then other times whole day without having to go then negative test.Again, thank you all for reading/responding. The rash I can somewhat handle but OMG this intense itching is unreal! I can only imagine what it would be like without the steriod injections or the visteril and creams.
Again, thank you all for understanding.

[elamar]

Sounds like maybe you need to be on an anti-spasmodic to at least help with the burning and frequency. The above two meds work well for that. I use utira-c which is the generic for urelle. I did 7 weeks of DSMO instills and it was pure hell. Each one made me worse. DSMO is considered "old school" by many doctors who are up to date on IC. When I switched doctors, she saw that I had DSMO and asked why I did it! I just looked at her and said that is what the other doctor prescribed - she didn't give me other options. The new doctor said that no one should be using DSMO anymore. On the flip-side, you will see some people who will post on here that they did very well on DSMO, so it can be confusing. All I can say is listen to your body. I don't know what to tell you about your rash, other than your body is saying something isn't right. I have heard about Aveeno oatmeal baths as being helpful for itching. I'm sorry to hear of all your troubles. I hope maybe you can at least try one of the above meds and at least get one thing under some sort of control. Good luck to you.

[Melody41]

I am taking an anti-spas med also. Same one you mentioned the generic utira-c. I was given elmiron however I have been scared to begin it due to the severe rash. Didnt want to add anything to the mix until knew what was causing it.
I definantly have to go back on the pain meds that I was taking prior to the DMSO procedure tho as weaning off them to see if it helped my symptoms did nothing but make me hurt worse however I am hoping to try more mild meds this time as I had been taking 120mg of mprphine for several yrs. While I know I cant function with no meds, I think I can do with milder ones as I havent been totally bedridden off everything but there are days where it is a struggle.
Maybe I can begin the elmiron whenever this rash is gone and that will provide some relief. Thanks again everyone for responding,. I was just at a bad time when I posted. I know you all understand.

Melody

[Bessie]

I don't know if this will help or not, but my husband's grandmother breaks out in a rash like that and she has atopic dermatitis. She has the intense itching and she is miserable when it breaks out. There are so many things that make her break out, like stress, weather changes, taking long baths, certain material, detergents, etc. She is prescribed Prednisone and Doxepin for her condition. She also has some kind of prescription cream that she uses. I think she even uses Eucerin to help the itching. I hope you can find out what is causing your rash and get it cleared up. I can only imagine how frustrating that must be.

[elamar]

You mentioned you were looking for lower level types of pain meds. Have you ever tried tramadol or ultracet? They are non narcotics that do help with pain. I have been through 4 different doctors, all of which do not believe in giving narcotics. The only thing I have been allowed as far as pain meds is generic tramadol. I only use it when things get too bad. Not every day. Another form of pain relief is muscle relaxants. I take 2 mg of generic valium three times a day which helps relax the pelvic floor. Maybe you can ask about that. It is such a low dose it doesn't make me feel loopy, although I do get a little more tired by mid afternoon. Just passing some ideas along. Hope they help. Good luck to you.

[monica78]

When i first got my DMSO treatment the uro explained to me that i would have a certain smell to other people and not to myself. He said that the DMSO is excreted through the skin. I don't know if that is causing your rash but it makes sense. I would ask the dr about it. THat was about 9 years ago so i don't know if anything in it has changed since then. I hope you feel better soon.