Cystro/Hyro DMSO to come....scared

[TXP28]

Hi Everyone,
I've been fighting a battle for the last 3 months. I won't go into my spill of everything I've tried but it's a lot. This all started w/ an infection that cleared but symptoms never got better.

Done PT, allergic to elmiron, on diet, on cystoprotek. My Uro wants me to do a cysto/hyrdro along w/ a DMSO instill next week. I'm going to be under general of course but after reading all these posts I'm freaking out and considering canceling due to some saying they got worse.

My symptoms are frequency/urgency only. No pain. I go about every hour but the fullness feeling is always there. If this makes me worse I don't know what I'll do.

I asked the Uro about it making me worse and she said, she hasn't had anyone say they've gotten worse but some haven't gotten better. She said about 50/50 chance.

Also, what exactly is DMSO, what does it do when it's in the bladder?

[nottoc4]

DMSO is a chemical that can penetrate the bladder lining and carry other medicines with it. I have had the instills and it really helps me. I'm glad I didn't know about DMSO before my treatments because I would probably declined to have the treatments. If you have faith in your Dr.I would recommend that you put yourself in her hands for awhile.

[Lovetoread]

I had a cysto/hydro/DMSO done about 1.5 years ago. It has been very successful for me. During the last 1.5 years I have had 2 flareups. One because I got too brave and started eating many things I shouldn't and the other due to an actual UTI. Be sure to ask for an antibiotic and pain pills after the procedure.

[Mothergoose]

I went to a new uro in the spring and he said he wanted to do his own cysto/hydo and while he was at it he wanted to try a DMSO treatment, I had read a lot of mixed feelings about DMSO but I quite liked this uro and he said he had good success with it so I agreed. He did this all under anastetic. Well to be completely truthful when I woke up I wondered what I had agreed too because it hurt like h*** but i don't do well with being cathed so that was probably most of the problem, the other thing I was had the feeling I had to go so bad and of course I was not allowed to empty my bladder, so I didn't like that feeling. Once i was in the daycare part they then wanted me to empty my bladder but i couldn't, but this is ussall for me I have urinary retention and being cathed puts me over the edge.

I was quite sore for a few days and stunk really bad for about 5 days. After a few days the pain got better, and then I was in quite a bit less pain for about 3 weeks. this is exactly what my uro told me to expect. I have not had another treatment , my uro is quite away from where I live, he said with a bit of difficulty he could set it up for me to get treatments of it in my home town but I have not needed it yet but it is nice to know if I feel I need it I can.

All in all I am glad I did this for a few reason and this is just my opinion, I think it told my new uro that IC really is a problem for me and I am will to do most anything to find something to help with my symptoms, that I was not just Dr. shopping for someone who saw things my way. I told him I had read not such good things about DMSO and he just stated I treat a lot of IC people and I have good success with it. And i now know how I react to it and for me it is not a scary thing, i know if things get bad I can call him and get it again, like something up my sleeve, it is good for your mind to know if things get bad there is help.

But from what I have read you need to decided what is right for you, and if you have ? please ask your Dr. about them, people here have such a wide variety of reaction to DMSO, they all mean well but if you decided not to try it from someone else's bad experience you may be denieing yourself a helpful treatment. Also different Dr.s have different thoughts on it's use so you need to ask lots of ? and decided what is right for you and your Dr.

Right before this treatment i almost canceled it, but decided I would try it once, I didn't think I my symptoms could get much worse anyways.

Good luck MG

[swimbabe1992]

Hi everyone.
I went to a new Urologist last summer because I had a bad I.C. flareup.
He recommended that I go into the hospital and get a hydrodistention. He said that it would probably really help me for awhile. He couldn't promise for how long.
Well, the I was under anasthesia (sp) so I couldn't feel anything. I was sore when I woke up, but the doctors and nurses made sure I peed and everything before I left the hospital that night. He sent me home with some Lortabs and some pyridium. I was a little sore the next day, but the third day I returned to work. I probably should have stayed home that day because I was still tired out from the anasthesia. But after that I started feeling great and have felt that way until this last weekend right after New Year's Day. Like others I had been brave and had been drinking regular coffee, etc. and then with the stress of the holidays it brought on a pretty big flareup.

Well, I went straight into my doctor on Monday, January 4, talked to him, and he recommended a DMSO treatment that day. Well, I felt crummy until about Thursday of this week, but then started feeling better. He schduled for another treatment this next week, and I am going to take it because even though I do not like to have a catheter put into me the medicine does help my bladder.

Sometimes you have to put with a little discomfort to get better. Both treatments have been worth it to me along with my Elmiron and not eating spicy foods, etc.

Hope this helps!

Sandy :)

[Snowden1]

May I ask how severe your symptoms were before the treatments? Did you have severe pain?

[swimbabe1992]

:smile tee
Before I got my DMSO treatment last Monday on the 4th, I was feeling lousy.
Last Sunday on the 3rd I didn't even get dressed. I stayed in my recliner and my bladder was hurting, I had bladder spasms, and it burned. Plus I had a lot of pain in my pelvic region which is always a mystery to me.

But, I am always straight with my doctor on how I feel. I have learned to be pretty assertive when talking to doctors and just ask for things to make me feel better. I also asked for a few pain pills because I was still trying to work. He gave me just a few until the treatment started helping.

So, in other words, I don't go very long feeling crummy. I have had I.C. for 20 years, and I have had enough pain with it to last me a lifetime. So, anytime I can get a treatment, or try something new when I have a flareup I am willing to try it. And I am ready to go in this next Wednesday for another treatment. I have a very busy job, and I don't want to be off sick unless I really have to.

Good luck to all with I.C. Please talk to your doctors and ask for things that will make you feel better and help with the pain. There are too many things nowadays for us so we don't have to suffer.

Thanks.
Sandy

[mmd2187]

I had my first hydrodistention last Friday and I was really scared and skeptical going in. I did have a lot of pain when I first woke up but since then I have been completely pain free. I can't believe it. Before this I was always aware of my bladder. I don't know any other way to put it other than that. My bladder always burned, ached, I had to pee every half hour. Not now, its like I don't even have a bladder! No pain when I pee and now I can go longer without the urge to go. I don't know how long this will last but I am enjoying every minute of it. Even if you have a 50/50 chance of getting success from this procedure, to me it was completely worth the risk. I feel great!!! So happy!

[nottoc4]

So happy to hear about treatments that work for IC'ers.I won't be afraid to get one if my Dr. ever suggests it. Right now I am in a good place and healing.

[Snowden1]

This has been such a positive post.:) Thank you ladies, for sharing.:)
Teresa

[TXP28]

Well, after much turmoil and skeptisism I went ahead with the procedure yesterday. I am of course exhausted from the anesthesia and pain medication but no pain! I just have to pee a lot and I assume this is normal since my bladder was stretched on top of doing a biopsy.

My uro who performed if said my bladder lining looked miraculous. No scaring, no bleeding, no tumors, no glomulerations. She said that my bladder was very contracted and small. Since I had my UTI a few months ago, the PFD has gotten worse which probably played into my bladder contracting so small.

It's actually hard for me to believe that someone doesn't think I have IC when for so long I've been telling myself that is what it has to be.

I pray this frequency/urgency gets better from this procedure. If not, I don't know what is left to do. Only time will tell.

[Mothergoose]

I think it is a good sign you are not in more pain form this, as that seems to be the norm after this procedure, so hopefully this will give you the relief you seek.

Sending you well wishes MG