[acouch]

Hello, I am a 25 year old that has been suffering from IC for about 3 years. I had hydrodistention surgery a year ago to diagnose my IC and found that it gave me great relief. I am thinking about asking my urologist if it is possible to do the surgery again. Do any of you use the hydrodistention as a form of therapy? I have been on elmiron for a year and haven't found it to be that helpful. Any information you have would be greatly appreciated!

[UroDoc]

I have several patients that find hydrodistention therapeutic and have it done several times a year, It is definitely something worth while discussing with your doctor, good luck

[JenJ]

I have had ic since I was 5 years old. I am now 32 years old. I have been through virtually every surgery, and commercial item, thought to be the next cure. I have had two distensions, and the first one worked, but after the second one it did not work. After years of instillations, tests, numerous drugs, medtronic devices, I finally found that physical therapy and chiropractic therapy worked. I now go to the gym 2 to 3 times for the therapy exercises. I also use the precor machine that was recommended by my therapist. This therapist herself had this dibilating problem, and gave her heart soul and nearly all of her money to find a relief. I went for a year, and it has been 7 years, and only get a problem if I do not do my exercises for a couple of weeks. I like the chiropractor, because after time my healing also was to have your body learn where it should be, instead of constantly walking funny because your hips are out. I go to him monthly maintenance only now. I am no longer on any medicines like elmiron, and dozens either. I do however have a mild muscle relaxer if I need it at night, which relieves urgency, frequency and pain if I need it. I went back to school, and have a normal life now. What I am trying to say is there is hope, you just have to find what works for you. I have found out though the hard way, that surgery and invasive types of procedures are not always the first way to go, because something simple like what I did could help you, but with the pain we are in we sometimes keep thinking we want instant relief, and sometimes it takes time to have a lifetime of freedom. Dont give up!

[acouch]

Thanks for the support!

[tobybabs70]

Hello:

I am new to this forum and have recenlty been diagnosed with IC (in June). I have had hydrodistention twice now. The first time it provided no relief, the second time was about 4 weeks ago and it has provided with some relief as far as frequency. My Uroligist says we can do it every three months if I so choose. I hope this is helpful to you.

[zipnjulie]

I have had IC for about 13 years. My doctor and I definitely use hydrodistention as a form of treatment. When the pain gets bad, or I have to go to the bathroom more frequently than I should normally (keeping IC in mind), I have the surgery. I have had to ask for it a couple of times, but usually my doctor says it is time. Sometimes I find that there is a lot of hemorraging in my bladder that I was unaware of. The Dr takes pics, and shows me what the lining of my bladder looks like. He shows me where it is bleeding, or where the worst places are. Occasionally, he will tell me, well it wasn't that bad, but usually it is. I have the surgery about once every 12 to 14 months. If I have a bad bout of kidney infections, I may need to have it more frequently. My Dr usually does an RPG to check my kidneys at the same time, along with a cystoscopy. Since it is out patient, I usually take about 4 days off, and I try not to tell many people about it. I don't want to get a reputation of Munchausen's!

[drwenski]

I found it helped the first time I had it done and I had relief for about a month.The second time it didn't help at all.I also tried the elmiron for 18 months with no help what so ever.The bladder instillations of heparin and DMSO helped a lot the first round too but no relief the next time.The only thing that brought me immediate and continued relief was a suprapubic catheter and I have had it for 6 and 1/2 years without 1 infection. I change the catheter myself once a month. In retrospect I wish I would have insisted on this in the beginning instead of enduring the painful so called standard treatments for IC.

My urologist reluctantly agreed to placing the catheter as it is a surgical procedure done in the office whereby the catheter enters the bladder through the lower abdomen above the pubic area.He said it wouldn't help and it took him two years to admit he was wrong.

[ICJP]

I've only had hydrodistention once (last winter), but my doctor told me that it could be a treatment option if I felt I needed it. She said some of her patients haven't responded to it until they've had it a couple times. Luckily, that first hydrodistention and my medication worked for me, but I would consider doing it again if my symptoms got worse or I stopped responding to elmiron.

[STEFFI43]

Hi,

I am a 64 yr. old woman and I have had a bladder problem for years. I was originally diagnosed with Urethral Stenosis and had dilatations done every three months. This treatment really didn't help much.
I saw a new Urologist last year and he performed a Hydrodistention and diagnosed IC which I believe was the correct diagnosis all of the years prior. I just had a Hydrodistention done last month for therapeutic reasons and it helped tremendously, as did the one last year. Ask your doctor to perform one for therapeutic reasons. The treatment helps me for almost a year. Instillation of medication into the bllader did not help and I have never been on Elmiron. By the way, do you have Fibromyalgia, also?

Steffi

[chippewas]

Yes, you can use hydrodistention as a form of therapy. I found it to be really helpful, too.
Simply ask your physician.