HELP! Severe pain with DMSO

[dminton]

I am 2 days out from my second DMSO instillation and in severe pain. I am so depressed and shaky. It hurt when she cathed me up at the top of my urethra but she did all the right things, used numbing stuff, etc. I have been in severe pain ever since. I only held the DMSO for 10 mins. I am taking vicodin and pyridium and they barely touch the pain. I also took Cipro so I know it's not a UTI. Has anyone else experienced this or have any advice? I will call my nurse and tell her but I know she won't have anything to suggest, just sympathy. I tolerated the first one 2 weeks ago without all this pain and agony and even had a great week and a half. Help! I just don't know what to think. Diana.

[ICNDonna]

I suggest you call your doctor's office. You may still be feeling some pain from the catheterization. If the catheter was more painful than usual and there was a specific place where it really hurt, it could be a bruise.

Hopefully you will feel better soon. Be sure to drink lots of water so you'll be sure your urine is dilute.

Warm hugs,
Donna

[dminton]

Thanks, Donna, the pain is easing a bit now and the 1 Vicodin helped a lot this morning, no pyridium even. It's so hard to tell if DMSO is a good or a bad thing when it causes so much discomfort, although I think the problem this time was my reaction to being cathed. The nurse said she used a 12 or 14 cath like always, plenty of lube/lidocaine gel, etc. I have heard of LoFric caths and pediatric feeding tubes being used, but she didn't think that would make any difference with all the lube we used. What do you think?

How do other people react to DMSO? Do many get worse before better? I read somewhere that it can take up to a month AFTER you complete the instillations to see if it is going to help. You would think they would tell you that if it's the case, wouldn't you? Patients need to know these things so they can keep hopes up as they go through the process.

Very curious to hear how others react to this stuff.

Thank you so much, Diana.

[redstonebef]

Yes. It takes me about a week to settle the pain down. So sorry its the pits I know. I dread each treatment I have to give myself but it finally settles down and is better for a little while. I hate IC and IBS . I am having pity party today in so much pain. Hugs

redstonebef

[Julie Smith]

I had 4 dmso treatments and dr. suggested I take my valium and pain meds. 1 hr. prior to apt. (i made arrangements for someone to drive me) First treatment I held for abut 12 minutes of agony and next 2 days were really bad. I just increased the pain meds. The second through 4th got better. In fact, the next day I felt better. I went home to rest, heat and pain meds. after each treatment and actually woke up feeling better next day. So hang in there, it will get better. Everyone is differnt, but my results were good and have spoken to many others who also had good results by sticking with it.

Definitely call your dr. to discuss. I can tell you the meds prior really helped a lot.

Don't give up on dmso. cussing hi lmao banghead angel

[dminton]

Hi, Julie, thanks for your reply.

My experience is just the opposite, though; I do better with the first treatment and then do worse with the ones after that. It's scary to get worse and I don't know what to do. I am going to call Stanford, where I have an appt. next week (if I can make it down there) and see what they say.

Thanks again.

[Julie Smith]

Diana,

I feel so bad you're symtoms are worse with each dmso. I'd be interested in hearing what your dr. had to say about it. Do you just continue to feel worse after dmso? I think the second and third dmso were bad, incresed symptoms for several days and I wondered why I was doing them. Then the 4th I felt better when I awoke the next day, like a miracle. I never had any more bc I changed uro's.

Hang in there, sending hugs your way,

Julie angel

[mayray518]

I did DMSO for a year. It was hard to hold it in sometime but better than dealing with IC pain. It actually worked for me for a year and then my system became immune to it.

[dminton]

Thank you all for your replies. I am now 6 days out from my second DMSO treatment, and I have to say the pain is about the worst I have ever had with IC, and I think I have a pretty severe case. I just don't think I want to go on with DMSO because the pain is so bad that 2 Vicodin do not even touch the pain. Yesterday I took Vicodin every 4 hours, oxybutinin, pyridium, and Bextra (anti-inflammatory) along with baking soda in water, and was still in almost unbearable pain. Wish me luck! Diana.

[Ginny]

Have you had your urine cultured for an infection since your last DMSO installation? Might be a good idea.

Ginny