Anyone Had Fulgeration>>

[KC_24]

I just found out less then a week ago that I have IC. I have been in a lot of pain over the last few years, and they could never figure it out. Less than a month ago they did a procedure (dilation of the urethra) which they never should have done. It didnt work because I had IC, and it made the pain 10 times worse. When they finally figured out that I had IC I was almost relieved. It was nice to have an answer, and some hope that this pain might go away.
The doctor started me on Elmiron 100mg three times a day, and 50mg of Amitriptyline. I am scheduled to go in for a cystoscopy hydro-distension fulgeration + DMSO instillation on the 20th of November. I am curious to know if anyone has had this procedure done, or if you think this medication might help. I am feeling really discouraged right now since I have been on these meds for a few days now, and I am still in a lot of pain Has anyone had a similiar procedure? any advise for the pain? Please help?

[ICNDonna]

I've had the hydrodistention with fulgeration, but my uro always waited about two weeks before doing a DMSO instillation. I suggest you be sure your doctor will prescribe pain medication for a few days after the procedure.

Donna

[KC_24]

Thanks for sharing that with me. I am worried because my Uro doesnt have rights to give narcotics for the pain. Last time I had something done he only gave me T3's. I dont have a family doctor, and I am having a hard time as it is for the pain, and I am so worried about this procedure because I know there wont be anything to help with pain. I dont know what to do.

[Nonna]

I can totally relate. I just sent you a long Private Message which came back undeliverable because I needed to create more room and after deleting a bunch of messages, it turned out that the one I'd written to you was gone. So it's late now, and I've run out of steam, but if you'd like to talk send me a PM and I'll give you my phone number and I can go into more details about possible suggestions. I know how lonely and scary it can be dealing with all of these procedures for the first time. It really helps to have some support. Send me a note, Nancy

[Claredale]

KC, read everything you can about DMSO. Make sure it's not the 50% solution like they did for me over 10 years ago. I hope that information has been given to all the doctors now because I know for me, it made my IC worse, but I didn't just have it during my hydro. I went through 3 six weekly treatments over about a years time.

After I was diagnosed with severe IC, my first uro referred me to Dr. Ragi Doggweiler. I was in absolute tears the first time I saw her because I was so afraid of "starting over" plus a huge fear of DMSO. Dr. Doggweiler assured me that she didn't use DMSO in her treatment of IC. Even though it didn't work on me, I do know several people with IC that it made a huge difference in their symptoms which is why I always suggest that DMSO be completely discussed.

Also I am very concerned that your doctor can't give pain meds. I have a very high tolerance to pain and believe me I would not have been able to tolerate the pain after my hydro without pain meds. T3s would be like eating an M&M for me. Although I don't require long acting pain meds, my doctor after I saw Dr. Conrad was a pelvic pain specialist and when I was so scared of knowing that I could possibly be on some sort of pain mgmt for the rest of my life, I was quite upset. But she made me understand the theory of pain meds and IC having pain as one of it's symptoms as very important. Pain meds allow our bodies to use it energy to help us heal instead of being worn out by being in pain 24/7.

Normally GP's don't give pain meds at least in my area, especially if they aren't trained regarding IC. I am lucky in that I have gone to the same practice for my general health care, that they are very aware of my IC and how severe it is. There have only been a few occasions that they have given me pain meds. I only take Lortab for the times that my doctor at the time was unavailable due to being out of the country, or she was at a seminar.

Please keep us posted on how your surgery and I pray that you receive the appropriate pain mgmt that you need. If you do find a GP, be sure to have your records with you as well as information regarding IC.

Hugs, Tracey

[ICNDonna]

Tylenol 3 can be very effective for pain control. I have a problem with codeine, but before I developed that problem, the T3s were great.

Donna

[KC_24]

Thank you all for you advise, I will look into the DMSO. I was also thinking that maybe my uro could refer me to someone who specializes in IC. I dont really have a family doctor so I have been going to walk ins, seems like they just dismiss the pain I am in, and they make me feel like I am just some drug addict that walked in off of the streets. Its ashame that they make you feel like that! I dont think this will be easy, but I feel so much better knowing that there are other people going through the same thing, people that understand and can give me advise of what they are going through. Thank you everyone! I will keep you posted on the sugery.

[KC_24]

I just wanted to let you all know that I had my surgery yesterday. I am obviously in some pain, but I was in a lot of pain before I went in, and I have to say that I almost feel better already. Thank you all for your support. I know its not over yet, but I am hoping this will be a good start.