DMSO installations for urethra irritation?

[MelindaP]

HI all!

I wanted to get some opionions on the DMSO installations. I developed IC symptoms about 2 years ago, right before I became pregnant through IVF. For the IVF I had to take the hormones Estrace & progestrone for the first 12 weeks of my pregnancy which I feel greatly worsened my bladder. I did some installations of heprain/marcain/kenollog (a series of 7 I think) after my first trimester. I do not feel they helped that much & in the beginning it felt like all my pain was in my urethra 24/7. It was horrible! I have been on Elmiron now for almost 2 years & 30mg of nortrypyline wich I think helps greatly. I noticed about a year ago I began to have on & off discomfort in my bladder. I have a feeling it might have been there all along, but the horrible burning in my urethra masked it. Now I have mild to moderate discomfort in my urethra 24/7 & on & off discomfort in my bladder. My uro is suggesting DMSO type of installation. But here is the thing. I have never really had urgency/frequency. Just this horrible irritation way up in my urethra/bladder base. Has anyone had this symptom & felt it improved with the installations?
Thanks!
Melinda

[ABliske]

I wouldn't get them in that case. The catherter will probably irritate your urethra even more!! In fact, my doctor said with all the DMSOs, Elmiron, and every other solution he has inserted into peoples bladders throughout the years, he doens't really think they've done a lot to help.
I feel that diet and painkillers have helped me the most. Maybe the DMSO would help if you have A LOT of bladder pain all over. I had Elmiron installs and was supposed to lie down for 15 minutes on all sides for it to really coat it. I did get a little relief until I urinated afterward. Then, the urethra was so irritated it burned and the pain lasted for several hours.

[ngazerro]

I was dx with IC about 6 weeks ago. I have had three installations since then. I also do not have any urgency or frequency, just alot of pain all over. I get pain in my bladder, hips, and feels like my kidneys. I have mild pain in my urethra only since I started the installs. My first I hurt worse, second one was a little better, third still hurts. They say it takes about four before you see the effects. The verdict is still out on them for me.

[humpieumpumkin]

I will never ever do that instill due to the risk of permanent bladder damage. I guess it can help some people.

ERika

[glassd18]

I developed IC after Estrace & prometrium too. I wish I never took the stuff. I don't know much about instills as I've never had one and my uro has never suggested doing them.

[mhilliard]

DMSO Cocktails

Hi there. I am new and just wanted to give a positive story because I think we all need to hear some good stories every once in a while to give us all hope!

I have had 5 DMSO cocktails. The first 4 were weekly and the last one was just about 2 weeks apart. The first 3 were painful ( not too much that I couldn't handle) from the catheder, but AZO helped. The burning went away the next day. My 5th one, yesterday, was much better for me. Today I have some minor pressure (like we all have). I go for my next one in 2 weeks. My doctor has me starting with 8 installs and then we will go from there. I am managing well without any other meds. other then an occasional AZO. I have been dealing with this for a year and for the first time I feel there is hope. I am down to going to the bathroom to about 6 times a day! I was diagnosed in Jan. of 2007. I think I have a mild case of this.

The nurses who do my installs tell me they have had good success. They told me that many of their patients come in monthly, 6 months or even up to a year for treatments. The practice I go to is great. They told me that whenever I feel I need a treatment just call or just come in. I think what is also helping is the kindness and honesty of the nurses and doctor that I have. It has made a huge difference and for that I am very greatful as I was really getting very upset about this.

We all react differently to all the tratments that are out there. My doctor kept telling me what works for one might not work for another, but together we will find something.

I hope that after my 8 treatments I might go into remission. Since dealing with this since last March and not knowing what I had, I know my body can go into remissions and be symptom free.

I wish all of you the best and much happiness! Thanks for all your support!
Melissa:

[humpieumpumkin]

I am so happy you have found something that worked for you. I know the cocktails can really be a blessing for some!

Erika

[mhilliard]

Dmso cocktail

Thank you. I just hope it someday will get me into a remission. I am trying to be positive!

[MelindaP]

Thankyou all for your input. I am just afraid of doing something that could make me worse. yet I wonder if it would help put me into a remission?

Melissa, that is great that they are starting to work for you! Did you ever have urethra/bladder base pain or was it all in your bladder?

Thanks!
Melinda

[mhilliard]

Dmso cocktail

Hi... I have I would say pressure right above my pubic bone. So yes, the base of my bladder. It basically feels like I have to go to the bathroom all the time. More annoying I would say then pain. The nurse told me that these are spasms from my bladder lining being irritated over time. They told me to give this time and as my bladder heals, so should the spasms. Detrol LA and Vesicare only seemed to make it worse. I just hope it goes away, as that is basically what I am dealing with at this point. Frequency is down, so that is good!

GOOD LUCK!!!

[MelindaP]

I would say mine is in my bladder base, but it is more at top of my urethra where I feel it. I know it is not at the bottom, near the opening of my urethra. In the beginning I thought it was just my urethra, but I wonder if the sensation is really at the base of my bladder. I also consider doing a urethral dialation to see if that helps. I have heard women with similar problems have found relief with that. But with anything, I am so afraid of making things worse. I also have that sensation of needing to void, but I just try to ignore it. The longer I agnore it, the less intense it feels.

I just want it to go away! Ugh!

Keep me posted!

Melinda

[mhilliard]

Dmso cocktail

I know if my mind is busy on other things my spasms don't seem to bother me as much as well. I am trying to ignore it. That is a GREAT idea! I do find the more I read about all the pain that people are in the more it upsets me that I am trapped in this and the worse I feel. I keep asking, WHY ME, why my family. I know I have no right saying that. Sometimes we really do need to hear good stories to give us hope!

I know in my heart that I can not let this run my life. I have come a long way in the past month about not letting this run my life. After my diagnosis I get very mad and somewhat depressed. I can not let myself get that way again. I hae a loving husband and 3 small children to care for! That is why I am trying to stay positive, stick with my diet and trust my doctors. Make sense?

I am glad I found this support group.

[bunnykinb]

My problem with IC is the continual urethral burning. I started weekly DMSO instills July 2006, then every 2 weeks, then monthly. April 2007 was my last monthly instill but the uro told the nurse that he doesn't want to stop cold turkey. I have to go back again in 2 weeks, then another month after that. I don't think the DMSO have helped at all.

[MelindaP]

Bunnykinb,

Sorry to hear the instills have not helped. I just feel there MUST be something out there that can help- us! I noticed you have frequency. I do not have frequency or urgency, just the continual urerthral irritation. I drink alot of water & that does help. I noticed you are only on 5mg of Elavil. That is a pretty low dose. I was on 20mg of Elavil & Dr. Moldwin (my uro) switched me to Nortryptilyn, 30mg. It works the same as Elavil, but without all the side effects. I have not had any weight gain on it either. Is your urethral burn near the top of your urethra like mine? I know others have said there is located more near the opening of their urethra.

I know there must be something out there for us! I don't want to stop trying things until I can find something that works!

Melinda

[glassd18]

Melinda,

Does the NOrtryptilyn help for your IC symptoms? In other words would you have frequency or urgency if you weren't on it? Does it help your urethral burning? Did you have weight gain on the Elavil, and is that why you switched. Just trying to determine if it's something I'd like to try.

Thanks Di