Anyone have no pain with DMSO?

[stacey79]

I have had IC my entire life. For me, it seems to flare up pretty bad about every 10 years. Except when it flared up at 23 two years ago, it has stayed flared up. I'm not sure it's going to get better this time.

Anyway, I have tried Elmiron, Ditropan, Elavil, Detrol and even hydro distension to try to help with my symptoms, but they're hanging in there, so my doctor is wanting to try DMSO once a week for six weeks. According to him it shouldn't be too painful. I don't have super severe symptoms, just mostly pressure and urgency and sometimes cramping and burning. I just started my own writing business, so I'm worried about making things worse with these treatments.

Has anyone had luck with them in not hurting too much? If it only bothers me the day I go, I could handle that, I just don't want to be down for most of the six weeks. It took a month and a half after the hydro for me to start to get back to the normal amount of pressure and stuff.

Thanks so much! :-)

Stacey

[Jeanne D.]

Stacey,

Believe it or not, but I had absolutely NO bladder/urethral pain with DMSO installations. I did suffer from severe headaches though that lasted for approximately 24 hours. I aslo smelled like an Italian salad and/or deli for about 24 hours (garlic).

I don't have IC, I have EC. When my bladder was treated with DMSO -- treatments once a week for 12 weeks -- I had severe inflammation, ulceration, and bleeding, (not from the dmso), yet I had no pain from the instillation. The treatments did not help me, so after the 12 were completed, I did not continue with the instillations.

Good luck to you!

Jeanne

[Kathi]

I felt a little crappy for about 3-4 hours after the instills. Not anything bad, not even the "garlic" smell. They helped my frequency. I would do them again. :flower:

[Saedy]

Hi Stacy,

I have been on DMSO for a little over a year, which is about as long as I have been diagnosed for...I started going for the installations every week for 6 weeks...then I worked my way up to to every 2 weeks...then every 3 weeks..needless to say though I am back to every 2 weeks. Although it is not a pleasant experience to go and get a cathater put in every week or so, it does give relief from symptoms (for the most part). I would suggest to take a pyridium or anti-spasm bladder pill about 1 1/2 hrs - 2 hrs before each appt as it lessens the burning sensation once the medication has been instilled into your bladder...NOT ALL PEOPLE GET THE BURNING SENSATION ONCE THE MEDS ARE INSTILLED, I HOWEVER DO...which is why I take a pyridium. For me, other than smelling like a garlic (or creamed corn as some say), and feeling a bit off the rest of the evening ie. tired, drained...almost like your going to start a flu feeling...the DMSO is great...although my symptoms have not fully cleared up (I have still have good days and bad days) I wouldn't stop doing it for anything...having 3 good days is better than not having any at all.

Good luck...let me know how everything goes

Saedy

[stacey79]

Thanks so much for your responses. They have been encouraging.

I think I'm going to go ahead and try the DMSO this Friday. I was wanting to wait, but now I'm at the point that I just need to do something for my symptoms. Nothing else has worked. I'm pretty good in the mornings, but by late afternoon I'm exhausted and having pressure and cramps that last all evening.

I will keep my Pyridium on hand for Friday, thanks for that tip! My whole life I'm made sure to have Pyridium around, just in case. I don't think I've ever taken a vacation without making sure I have some with me. :)

I appreciate everyone's words so much. I'm relatively new to the message boards, but they have really encouraged me. It's nice to talk to people who understand where I'm coming from! :)

[steph4308]

Best of luck to you Stacey!
I always had severe pain right after my DMSO instills but was usally much better the next day. I was young and didn't have access to pyridium (it wasn't over-the-counter yet) back then. I should have asked for some and some pain pills but was too reserved to speak up for myself back then. I'm sure that combo would have done wonders. Hopefully it will do wonders for you. I think the DMSO really worked for me and I hope it works for you! Here's to a great big remission for you!!!
Steph

[Saedy]

All the best Stacy...let me know how it all goes.

Hugs

Saedy

[stacey79]

I have one more question. My doctor's office said that I don't need to have anyone drive me since they aren't putting me to sleep. I live about 5-7 minutes from my doctor's office, depending on traffic. I have to walk quite a bit to get to his office because it's part of our hospital.

My husband has offered to take off a couple of hours to drive me there and bring me home. Do you think that would be best for my first time? I'm just a bit worried if I'm in too much pain that it will be hard to drive. I have some pain pills live from my hydro, but I'm not planning on taking them unless I need them and even then, I don't think I will until I get home.

Thanks again for all of the support! :)

[Saedy]

My first time, my husband did the same thing for me and I was glad...no had told me about taking the Pyridium before my appt and I was in a lot of discomfort afterward...plus knowing that he was there if I needed him made me feel more at ease. It takes a few installations for your body to get used to the meds. I booked my 1st DMSO appt after work one day because I wasn't sure how I would feel afterwards and I am glad I did. Now I always go at the end of the day that way I can recoup afterward.

Lucks

Tara

[Saedy]

Forgot to mention that I really think being your first time you should take pyridium...again this is a friendly suggestion...

[steph4308]

I agree with Saedy's suggestion. When I had mine I didn't have a car so I had to walk to my uro's office from work (about 1/2 - 1 mile). There were times I didn't think I'd make it back to work. The main problem was that the pain was so bad I felt like I was going to explode if I didn't get to a bathroom right away. Back then they told you to hold it in your bladder for ??? minutes before urinating. So it wasn't so much of a "I feel so bad I can't drive" situation as it was "I need a bathroom ASAP to relieve this pain". Do you know what I mean? I would have felt just as horrible in the passenger's seat, and just as desperate for a toliet.

If the uro doesn't have a problem with you taking pyridium prior to your instill I'd do it for sure. And enough time before the appointment so it will be kicking in before the pain starts.

Best of luck!

[stacey79]

Thanks for the suggestions. I think I will have my husband go. He is good at distracting me and keeping me from getting too nervous. Plus, it would be nice to have someone to drive, just in case. I have planned to take the day off. If I end up being able to work then I will, but otherwise I'm working late now to get things done.

I will call my uro tomorrow and see if taking Pyridium would be OK. Do they sell it over the counter? I've always just sort of hoarded it! :) I've also been fortunate to even have a family doctor who understands my bladder problems and will prescribe it for me when I need it.

Thanks again for such nice responses. I talk to my family about this and they are very supportive, but I'm just still thrilled to have this support from people who really know what I'm talking about! :)

[Saedy]

Me too Stacy!!!!!!!! :dance:

[stacey79]

Just got back from my first DMSO. I'm glad that my husband went with me. He was really good. The actual instillation wasn't as bad as having to hold the medicine in my bladder. That was pretty rough.

Now I'm just having pressure and stuff, but I took the day off work, so I'm hanging out with my buddy the heating pad and some books and movies. Thanks so much for all of your advice. I'm going to head back to the couch now.

Thanks again!

[steph4308]

Hope things calm down for you so you can enjoy your weekend! Enjoy your couch and movies! Steph

[RedLione]

Stacey, for what it's worth to you now, I had several DMSO installations and they really helped my bladder a LOT. I only discontinued them because we didn't seem to be able to avoid a bladder infection after each one, and I have this abhorrance for antibiotics. I always end up with a yeast infection after, and if I'm doing regular installations, I have a regular infection. Anyway, the installations were never uncomfortable for me and seemed to help a lot for a couple of weeks. I hope this is something that works for you!!

[stacey79]

Thanks again for the support and encouragement, guys. I'm feeling better this evening, especially laying flat with my heating pad! My husband just went to go rent a new movie for us. I thought I got away without smelling like garlic until he got home from work and noticed. :)

I'm glad to hear that DMSO has worked for some. Hopefully it will work and not cause any further problems.

Thanks again and have a good weekend, everyone! :lmao:

[sweettabby]

I do fine on them. I have them done about every three weeks. As a matter of fact I have to have one next week. They are a little uncomfortable at first but after that I am fine. They have been what has worked for me the best these last seven years. I have to admit though their potency is a little less now. The first time I started them it took two treatments of six each time before I went into remission. I stayed in remission for almost two years. Then it came back and I started them again. Now my remission doesnt last quite as long probably about four to five months at a time. That is why I am on a maintence program of once a month.