My first DMSO treatment

[DanaW]

I decided to try the DMSO treatments bc I couldn't take the Elmiron and nothing else seems to work. I was pretty nervous during the procedure but, it wasn't too bad. It was after the stuff was in and I sat back up and it began to burn pretty bad. I had prepared and taken 2 percs before the appt. I can't imagine what it would have felt like if I hadn't ! This is day 3 and my pain is almost unbearable! Today is the worst day since I had it done. I am going to give it until tom. and see if it gets any better. If it doesn't maybe I have a UTI? I very rarely get them but, am thinking maybe it was from the catheter? She did mistakenly put it in the other spot by accident...then, pulled it out and put it in the right place. But, that could have introduced bacterial to my bladder, don't you think? I had just gotten over a yeast infection the week before. This same thing happened when I had my last C-section. And, I ended up with the worst UTI of my life. Do any of you know if they put in an antibiotic with the solution, just in case of bacteria getting in? The pain pills are not even working anymore ! frown

[DanaW]

One more question. Is this common to have a very bad flare after the first treatment?

[khouse]

Dana,
I can only speak from my experience, but I was much worse after my dsmo treatments. I endured them for 6 weeks and then another 4 weeks with a break in between, but I kept thinking it would help becuase my Mom has Ic and she got relief from the treatments. But I won't go thru them again. I am not being negative because I know lots of people that they have helped!!!!!! Just telling you my experience. I won't go thru them again. And oh my gosh she put it in the wrong spot and then put it in the "right" spot you run a small risk of infection with a catather insereted properly much less improperly!!!!!! They put antibiotics in my treatments but I don't think that is standard procedure, I guess you would have to check with your doc. Hope you find relief soon and get some rest. Sending prayers your way!
Love,
Kim

[ICNDonna]

My first DMSO treatment left me in pain for most of a week. I was determined that I would give it a fair try so I continued with them. I was ready to give it up and say "no more" when I slept all night one night with no bathroom trips. That was enough motivation for me.

After the first few treatments, the pain was less at each treatment. Now I am on a monthly schedule and only feel some discomfort for a few hours after a treatment. My doctor did give me pain meds to take after the treatments.

DMSO doesn't work for everyone, but for me it does.

Warm healing thoughts,
Donna

[DanaW]

Thanks for the replies. I am going to continue with the next treatment. I am a little better today. So, I am thinking it was a reaction to the treatment and not an infection.

[Dixiefireball]

when i use to have the dmso at the office they always gave me a leviquin to take after the treatment just in case an infection tried to start. use to the treatments at the office felt like they was going to kill me but now i do them at home one to three times a day as needed and i don't flare from them anymore.
good luck and i hope the dmso treatments help you
hugs to you. grouphug

[Julie Smith]

Sorry you're hurting so badly. It seems very strange to me that it was put in wrong place, who did this? If you continue and this was a nurse I would INSIST that the dr. do the rest. If the dr. did this I would change. Also, if you don't have medication to relax the pelvis, like valium or something else and a pain medication I would contact dr. immediatedly and advise him of what's going on and get the medication. Sometimes we hate to bother the dr. or/and we think it will go away soon but we need to take an active role to take care of ourselves. I let my first dr. bully me because I was too weak, thought because he's a dr. he must be right, blah blah.

Well, thank goodness for my local ic chapter laison and this board I was able to change dr's. and speack my peace with my new dr., anotherwards we're a team in my treatment.

I had good luck with 4 dmso treatments, but I also took azo for the burning, muscle relaxant and pain meds. I was still in pain and tired all the time. I noticed improvent after 3rd, and with 4th had big immprovement so we decided to stop.

Hang in there, always trust your instict and I hope you feel better SOON. Sending you warm hugs, grouphug angel kissing

[DanaW]

I did get a prescription for Valium a few months ago. It was only 2 mg. though. And, my Uro. said I couldn't take it at the same time as my Perco. So, of course, it did nothing for the pain. If any of you are taking Valium...how many milligrams? And, can you take yours with pain meds? I almost always have that deep pain between my legs....and, am thinking that I do need something to relax those muscles...I also have FM. I am thinking that just makes the pain worse bc with FM we feel pain more easily....VERY FRUSTRATING.

[alana rose]

Dana-
I've had about three dmso treatments-I am 'put under' for them. The first treatment I had pain for the first 48hrs (which is normal) and then about two weeks of no pain. The second treatment, I had pain for about 72hrs and no pain for nearly one month. I just had my third treatment with nearly over a week of excrutiating pain and maybe one to two days of no pain. I then went in for a CAT scan that lead me into yet another terrible flare. So, I am not a fan of dmso. My uro isn't very understanding at all. Oh well, thank goodness my gp is! Perhaps have a urine test done-maybe you do have an uti and in a flare. Take care, drink lots of water.
alana

[STACYO]

They tell me the DMSO can make things worse before
they get better. I am newly diagnosed (Jan 7) and
just had my 4th DMSO/heparin instill on Friday.
I have to take Urelief-Plus (its like pyridium) for the first 24-48 hours after, plus pain meds.
It does burn for me really bad--I go straight home and soak in a warm bath with baking soda.
That really soothes the sensitive skin down there.
Heating pad really helps me alot, too. I don't
think I could stand the pain without the Urelief Plus, which helps with the spasms, burning, urethra pain after the instills.
The first 3 instills made things worse, but after the 4th I am seeing a little bit of improvement.

Best of luck to you, keep me posted on how you are doing. Its so hard with IC--everyone is so different around what works and what doesnt'

Take care,

Stacy

[rachelm]

Dana,

First I have to say that reinserting the catheter after missing the right hole was absolutely horible and opened you up for an even greater chance of a UTI. I self-cath due to continual retention as well as get heparin/marcain instills. I, myself am very carefull at home and still use a mirror just to make sure I get it right the first time. On the occasion when I have missed (my vag. opening and urethra are very close, not at all like the pic. they gave me to instruct how to self-cath) I get another catheter because I'm so prone to infection that I can't risk the chance of getting more bacteria up there. Your nurse should have just grabbed another catheter instead of opening you up to an unsterile catheter. I would say something to the dr. and stop her if you catch her ever doing that again. cussing

I often get an infection if I'm not taking a preventative antibiodic during times when I get instills frequently. I'm taking a low dose now to prevent them.

As for DMSO I don't have any experience with it as I've never tried it before. I agree that you should go with your gut. If you don't get some relief soon I would talk to your dr. about other options. Also I ask my dr. to put some lidicaine jelly on the tip of a q-tip and put it just inside the urethra or around the outside in that area. It helps the burning a lot! I got my own tube at home and a little one in my purse too! It's great when I first feel the burning coming on. I would also recommend asking about Pyridium pluss, or urell. They're antispasmodics that help with bladder spasms and urethral burn. I use Zanaflax 4mg at night to relax the pelvic muscles. It's a muscle relaxer that is supposed to be one of the most effective for smooth muscle such as that found in the pelvis and bladder area. It helps some especially at night. My dr. says its supposed to have a build up effect and work in the daytime as well but I can't tell. I started taking skelaxin during the day and it helped some while I was working but I started retaining and he told me I had to go off of it. Some meds. can cause retention. Unfortunately my pain meds do and there's no way I can go off of them and functions so now I'm in total retention and self-cath every 2 hours. Hopefully the interstim will fix that tomorrow.

I definitely would discuss your concerns with your dr. and together explore your options. Hopefully he can give you some additional meds that will make the treatments less painfull. Another thought, some people have reported that their DMSO coctail contains marcaine which might help numb the bladder pain some. Just a thought.

Please keep us up to date and let us know how your doing. I'm sure the others that have experienced the DMSO will be more helpful than I can be on the treatment. Take Care, and I hope you feel better soon. (((huggs))) grouphug

Rachel

Rachel

[dminton]

To Alana Rose-

I had a similar experience, and thought DMSO was the ticket until the third instillation (the first time) or the second instillation (the second time). Then the pain became unbearable. It is weird how they got worse with each instillation, not better. I had to just stop altogether after those bad ones.

I am considering DMSO2 which is supposed to not hurt.