First DMSO treatment

[StephanieS]

Ok so I had it today at 4:30. My uro gave me the freezing gel and put something in the cocktail, bicarbonate something I think to help pain. I almost died when the catheter went in and then to hold the medication was horrible and once I held it for the 20 minutes, I couldn't go right away. I had to call in sick to work and now the pressure down below is so bad. After reading up on DMSO's I am scared but what if I tell my uro no and he drops me? Elmiron wasn't working so whats next? And to top it all of I have no pain meds because they are like asking for crack!!

[Sarojini]

DMSO can have that effect. HOWEVER, they say that the first few can be painful and can worsen symptoms, but usually if you're going to feel better as a result of DMSO instills, most say suddenly starts working at about the 4th instill -- and a smaller percentage say that they finished a series of six, waited a week or two, and then felt better.

My advice is to try to get through a few more -- I know it's hard, but at least then you will have given this a fair shot to see if it will work for you. I know you got lidocaine ("freezing stuff") in the urethra, but was lidocaine mixed into your instill cocktail? They say that can help -- even more helpful, have your doc instill lidocaine first, let it sit, drain the bladder, and THEN do the DMSO part.

That said, I personally had a bad experience with DMSO treatments; they were excruciatingly painful for me, but I suffered through about 10 of them before I got the gumption to switch urologists. The DMSO Guy would prescribe only Elmiron, Atarax, and DMSO and claimed that at least 95% of his patients got better on this -- I like the Elmiron and Atarax, don't get me wrong, but the DMSO was the worst thing anyone has done to my body without benefit of anesthesia :(. Thankfully, the two uros I've had since then don't believe in DMSO treatment. :woohoo:

[Big Red]

I dont think any one like DMSO treatemnts but they do get better and I have found they do help.

[StephanieS]

Hi Jennifer I read your story and Mine is similar in my younger years as a child. It's so interesting to hear about people with the same problems that I have had for years. My mother was told it was all in my head and she was a nurse. Thanks for all the info on the treatmnents. My URO is so great but its the pain meds he doesn't like to give out and I really need them sometimes. I work 68-72 hours a week and sometimes don't know if I can make it through the day. I am going to try to finish the run of 6 but tell me why when we have so much pain and urgency why we have to go through such embarrassing tests and treatments? Haven't we all suffered enough?LOL!! Maybe I need some time off for a while but my student loans are huge so its a catch 22 situation but I'm sure everyone understands that dilemma. Thank God for this site and all of you I have been on all day while I have been home as I have been so stressed but now at least I know what to expect.

[ICNDonna]

My first few DMSO treatments were extremely painful, but my uro did prescribe pain meds for me to help me through the tough time. I was about ready to say "no more" when after about the 4th instillation I slept all night one night for the first time in many years. That was enough to convince me to continue.

My suggestion would be to ask your uro for pain meds for after your treatments. If he says no, then you might consider making a change in either treatment options or urologists.

Warm hugs,
Donna

[kadi]

Just seconding what Donna said. The first few are the hardest, then it gets better. I did have Darvocet & Pyridium for afterwards & I always planned them for Friday afternoons with a quiet weekend to recover.

I was on DMSO coctail instillations for a year and they did reduce my symptoms. Hoping you have good results.

[StephanieS]

Thanks everyone,

I guess i'll keep doing them for at least 4. I am just so frustrated about pain management is really the underlying issue. I may talk to my gp about it and maybe she will call my uro. I am off to work now until tomorrow night so I hope everyone has a wonderful weekend.:smile tee

[Bethrlk]

Stephanie,

I am one who also believes in the DMSO treatments - in fact I am currently in a cycle of one and just completed the 4th round. I find that the DMSO works after the 5th or 6th treatment - and I agree with Donna: your uro should make you feel VERY comfortable with pain meds and just plain gentleness during the procedure.

Good luck with the treatment and remember YOU are your best advocate!

Regards,
Beth (-:

[Sarojini]

Hey Stephanie,

Just wanted to let you know that I know exactly what you go through with working 68-72 hr weeks. When I wrote my story, I was taking some time off, but now I'm back working as a scientist. Once Sunday rolls around, I will have worked 70 hours this week... so I definitely know how exhausted one can get!!!!!! :grouphug:

I'm sorry about your pain situation... have you tried asking your primary care doctor or gynecologist for help? If no one will help, as the others said, changing uros could work, or you can ask for a referral to a pain management clinic. These clinics specialize in treating pain and are more experienced in dealing with chronic issues.

[bunnykinb]

I had heparin instills and Elmiron instills before. And, now DMSO. It didn't matter what type of instill, when I get cathed, it is very painful before and after and I don't even have an infection. I guess some people are more sensitive than others.

I pray that the DMSO works since the other two didn't.

Oh, Donna, I know you said on my other post that you were allergic to sulfa but didn't have any problem with Elmiron. I guess that means you were okay with the DMSO too? I think it is just anxiety for me since the first DMSO I didn't have any problem but soon after the 2nd DMSO, my throat felt tight.

Thanks.

[bunnykinb]

Soon after getting the DMSO treatment, I feel really tired. Have others felt that way too?

[StephanieS]

Hi guys,

Just an update. I am on my 3rd and the catheter is horrible. I did get a B and O suppository but the nurse forgot the freezing gel. She was old school and not gentle. Do you know the medicine is fine but the cath is like a hot poker. I still have no pain meds but i'll survive. I did find out my mixture is 50/50 and not 25%. I am going to speak to uro about that and I have had no garlic smell thank god. My downstairs is very sore so next week I am asking for suppository, gel, and soft cath so hopefully it will be better. I am not sure who but someone said they were allergic to sulfa as am I and I have not had a problem with Dsmo. Thanks for all the support. I did sleep 6 hours straight without using washroom!!!

[Bethrlk]

Hi Stephanie,

Sorry to hear of the cath/DMSO problems. First ask for the freezing gel AND a different nurse. Speak up and tell them that you are in pain and require compassion and gentleness. I have been where you are before and learned you have to speak up for yourself.

You should be given one or two pyridiums right before the procedure to numb your urethra when you need to pee later on. I just finished my 6th week of DMSO and my uro gives me the pyridium before and 2 pills for afterwards. Your bladder should also be numbed before the DMSO is instilled with a solution of marcaine. This alleviates the burning.

Also, ask for a pediatric cath. And if you are feeling discomfort ask for pain meds. IC is horrible enough without being treated roughly by the doctor's staff.

Good luck with everything and PLEASE speak up for yourself. I am sending healing thoughts your way! (-:

Hugs,
Beth

[bunnykinb]

I am the one who said I was allergic to sulfa. I don't know if it the anxiety, but hours later and the next day too, I get a tight feeling in my throat. I had this too when taking Elmiron orally for 2 weeks straight. I attempted Elmiron 3 times, but keep getting that feeling.

I will ask the nurse again about getting the numbing gel before. I had asked her already and she said she always uses it, but after peeing the first time, it burns like crazy. The doctor gave me pyridium before only once.

thanks,