I am soooooo NOT happy!!

[windchaser]

ok here goes I have an appointment with my uro yesterday for my 4th DMSO damm they hurt sooo bad, I went but I didnt think they would be able to do it because I have been sooo sore and hurting soo bad because of a yeast infection from 2 weeks worth of antibiotic for a badd sinus infection well to my horror the nuse said well if you dont want to do it you will have to do an extra treatment like i just didnt want to do it, then did the DMSO which hurt sooooo bad OMG :( I started cry as soon as she started the treatment and then she had the nerve to tell me(I think your thinking its going to be worse then it really was) grrrrrrrr I felt like telling her let me do it to you and see how you feel!!! :mad::rant: Then as Im getting dressed she tells me the doctor will be in to talk to me in a minute. Then the nurse came back in and told me that I have to have the last 2 DMSOs and that I could go home ???????? So I left the office crying. I got to my older friends house that was watching my son for me bawlling, and she was soo mad, she is the one that refered me to him telling me he was a great doctor, she had an appointment with him a couple hours after mine and went to talk to him about me too. I guess the nurse told him I refused the last 2 treatments and he told her no, also the nurse never told him i wanted to talk to him!!:cussing::rant: So he told my friend that we is going to make a note in my chart to come in and talk to me himself on monday when I get my next DMSO and he is going to have a talk with the nurse... But im worryied that she is going to hurt me with my next DMSO :( im scared now...... ok well im done now just had to get it out ty all:toilet:

[SharonA]

I am so sorry you went through this. I hope the last two treatments are better for you. (((Hugs)))

[karen10]

There's certainly been a lot of debate on DMSO instills. Here's one thread:

http://www.ic-network.com/forum/showthread.php?t=45358&highlight=dmso

I've also read/heard that they can cause more bladder damage. If they are so painful, why not try the heparin instills? They are very soothing as they have lidocaine. If your doctor isn't aware of how to do them, here' s a link to Dr. Parson's website. He developed the heparin instills:

http://drlowellparsons.org/wst_page4.html

Hope you get to feeling better soon! :pray:

[windchaser]

my doctor just wants me to finish the DMSO round of 6 then try something else at least i tried which I understand but I am in so much pain that I just cant handle anymore, I will finish the last 2 just to show that I did try the whole thing im over half way done already so why quit hmmm idk lol

[karen10]

Okay, perhaps it's because I'm so resistant to any pain, that my answer to your question "so why quit?" is BECAUSE IT HURTS! (don't mean to yell at you, just emphasizing the thought going through my head!) Plus it's your body and your treatment, and DMSO might be harmful (I know it has helped some, but a "might" is enough reason for me not to try it!). Your doctor doesn't feel it! It's important to trust your instincts and and be able to direct your own healthcare!! The research keeps changing, and there's more current treatments. :smile tee

[LaurenEngland]

I'm really sorry you're hurting and I do hope everything gets sorted out.
it's awful to be in so much pain daily. It sounds like the nurse was not very sympathetic at all. I hope you feel better soon.

does anyone know how to post photos on here? as others have them in their signatures xx

[leelee88]

I hate that you have went through this.
I just want to say this. Please remember that this is YOUR BODY!! You are the one that has to go through this NOT anyone else! I know there is alot who have been helped by DMSO, but on the other hand there also has been alot that have not. It is your right to say enough is enough. What does it matter if you have tried 1 or 6 the fact is they hurt you and are putting your body in more stress and pain. If your Dr is not happy with your decision to quit them and cannot respect that, then I truly believe he is not the right Dr for you. And I would be looking for another Dr. There are so many other treatment options out there. I hope you do whatever you feel is right for you. ((((hugs))))

[ICNDonna]

My first few DMSO treatments were extremely painful and I was ready to say no more when one morning I woke up and realized that for the first time in many years I had slept all night.

It is absolutely your decision as to whether you have those last two instillations. If you plan to do them, I suggest you specifically ask to have someone other than that nurse perform the procedure. Her technique may not be very good.

Warm hugs,
Donna

[waterflow]

I gave up on it after the 3rd one. Told the nurse to tell the doc I was not doing it anymore. Plus I didn't have anything for pain back then. Do you? Is there another nurse that could do it next time or how about the doc? Maybe it is the way she does it too. If you really don't want to do it anymore jsut tell them so. Don't hold out htinking you have to please them. I did that in the beginning of the IC and learned the hard way to speak up and don't just do what everyone wants me to. Hope you get to feeling better.

[Claredale]

I was young and thought my doctor had to know what was best for me. I went through 3 sets of 6 week treatments over a period of about a year and a half. Each time I was steadily getting worse. I cried during the treatment, the trip home (with someone else driving, because I took pain meds to just get me through the treatment that I hated) and for the entire weekend after the treatment. I never saw any relief from the DMSOs, but like I said, I just kept thinking that he knew what was best. He did a 2nd hydro/cysto on me after that "horrible ordeal" and I was originally diagnosed with mild to moderate IC during my first hydro. My 2nd hydro showed Iwas now in the severe stage of IC after those treatments. I am not saying that the DMSO caused my IC to get worse, but it didn't help!) but after my 2nd hydro, I was diagnosed with severe IC and that he didn't have the expertise to help me anymore and sent me to a pelvic pain specialist, Dr. Ragi Doggweiler. Many on here know who she is and how wonderful of a doctor she is especially when it comes to IC. She worked under Dr. Brockoff for a few years. When I was going over my history with her, and I mentioned the DMSO treatments I went through, she said that in her experience, especially with severe IC, DMSO was "old school" and never used that as a treatment on her patients. When Dr. Ragi left my city, I went to another doctor that she recommended that also specializes in IC. He said that he doesn't do DMSO treatments either. The only time he even used the treatment was after a cysto to help with the healing, but he didnt' use DMSO for his IC patients. His practice used instills, which didn't help me either, but we learned that was because my urethra was too sensitive to caths.

I am just trying to say, just because they are doctors and have "been through this before" doesn't make all their treatments the best for us as an individual. My prior doctor and my current one treat me as an individual and they both listen to me since I am finally listening to my own body and I research everything!

T83

[windchaser]

i feel like the treatments make the pain 3x worse i get some pain meds i get 30 for a whole month nothing more which is really hard when i have pain all the time sometimes worse then others, but he wants to finish this treatment and after that i am saying absolutely no more!!!! I just called his office because i have 2 pain pills left until monday and i can not make it til i see him and i cant go to another doctor because we made an agreement that i would only get them from him.. so i begged the lady on the phone for him to please do something until i could see him on monday hope it works... please please please

[Claredale]

I know just the spot you were in. I am so glad that my doctor at least understood that and would give me more pain meds. What pain medication does he have you on. Lortab worked for me the majority of the time. He knew I had to take it right when I could feel the pain building up, so I needed to take it then for it to work most effectively. He would call in meds for me. It just gets to me that so many doctors don't get the pain level we endure on a daily basis. That is one of the main reasons I stuck to Lortab during the majority of my IC life is because I knew it was a med that could be called in

Hope your call is successful. I am praying for you!

Tracey