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Can anyone tell me if they get a hydro every few months for their IC symptoms, and what to expect?? My 6 week cycle of DMSO ends next week and the uro suggested trying a hydro if I am still feeling severe urgency/pain.
Thanks for any replies!
Beth
IC diagnosis 1999
Meds: Elmiron
hydroxyzine hcl
DMSO as needed
valium as needed
librax 3x day
TENS therapy
Thanks to all on the boards - YOU have helped more than I can say!
A person's true wealth is the good he or she does in the world.
I had a hydro about a month ago to diagnois my IC. It didn't help my symptoms any but I know there are many that are helped by it. I'm sure they will chime in with their experiences, I can tell you how mine went even though it didn't help
Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
Thanks Christine - btw I LOVE the sick sick sick of peeing parody
I had the hydro to diagnose too, years ago, but haven't heard about having it every few months to treat the IC symptoms....looking for some advice and getting nervous that old stand by remedies are not helping the flares<BIG SIGH>...time to get off the pity pot! Thanks again,
BETH
IC diagnosis 1999
Meds: Elmiron
hydroxyzine hcl
DMSO as needed
valium as needed
librax 3x day
TENS therapy
Thanks to all on the boards - YOU have helped more than I can say!
A person's true wealth is the good he or she does in the world.
Yea, I know some people have them every 6 months to a year to help with their symptoms. I was really hoping that it would helping mine, it didn't, but the Elavil that he put me on when I went back for my biopsy results helped BIG time. Have you tried it? It's making me want to eat like a horse but it really did help with my everyday base line pain and freq. Now I'm in a flare so it's like I never took the Elavil but before the flare I was doing MUCH better.
Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
I have had 11 hydros in the past 15 years and they really help my symptoms. I had 2 done within one year back in 1995 but I usually have one about every 15 months - 2 years. I am also helped by DMSO. When the DMSO stops working for me I have a hydro. I have been using DMSO every 3 weeks for the past 15 years and it has been a lifesaver for me.
IC Donna has really good results from these. I however became alot worse. So it's hard to tell unless you try it, if you are going to be helped by this.
I'm one of the ones that have hydros done every 6 months or so -- it does help my symptoms of pain -- I think I have had 8 or 9 in the last 4 years when my doctor suggested it since there really is much else he can do for me.
(when the pain gets too much and pain medication doesn't help I just call his nurse and tell them its time). As to frequency and urgency my family doctor has put me on Vesicare (5mg) started that a few months ago and that works wonders. (nothing else has worked for me medication wise; and I can't have the interstem put in due to my heart valve. (I have to be off of my Coumadin on and off for this and my Cardio doctor has said NO in a big way.
As to what to expect,there is pain,not going to lie to you especially when you first go to the bathroom,(razor blade like) you might need some pain medication, (unless you go to a pain management doctor then they won't as they know you will break your contract--but they will give you something for pain while you are there); also some doctors will give you antibotics, but some won't they figure you get enough though your IV's.
I work full time, I usually have these done on Thursdays and take off Friday and am able to return to work on Mondays; however; I work in an office job; and my pain is usually pretty much gone by Sunday. However, we
are all different and you might have pain longer. It might help you or it might not. I know ICNDonna has had over 40 and she said it helps her quite abit, has them anywhere from 6months to a year. Hopefully, she will come and answer your questions. I hope this helps you.
Hydrodistention does help my symptoms substantially. I actually feel better the day after a hydro than I do just before. There are many who are helped, probably just as many who don't see any difference at all, and a very few who feel it made them worse.
I hope it will do the trick for you.
Donna
Stay safe
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool
Thanks for your replies...I actually found the thread where MANY people were discussing the hydro and more seemed dead set against it b/c of the risks involved. I feel, nothing ventured, nothing gained. I am trying to be very proactive with my treatments....I also have the utmost confidence in my uro, so if the DMSO is not doing the trick this time around, I will probably try the hydro.
It's nice to read so many opinions and stories from the group. They keep me grounded - at least for the time being!
Thanks again!
Regards,
BETH
IC diagnosis 1999
Meds: Elmiron
hydroxyzine hcl
DMSO as needed
valium as needed
librax 3x day
TENS therapy
Thanks to all on the boards - YOU have helped more than I can say!
A person's true wealth is the good he or she does in the world.
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