Hydro every other month????

[RAS6]

Hello Everyone! :hi:
I went to my post-op visit yesterday and was a bit confused when the Doctor said perhaps I should consider having the Hydrodistension done everyother month if needed. I told him that I respected his opinion, but felt it was too invasive of a procedure for me to consider that often. Recovery took me a week before I was off of Vicadin and back to real life and working part time, and I still don't feel painfree, though I do feel better than I did before the procedure. While following the diet and taking a few extra strength Tylenol and occasionally using my heating pad I have now had three pain free days, and my pain has gone from 5-8 to a 0-4 (but it has only been a little over a week since the procedure).
Still, we have no idea how long this will last.
Has anyone had hydordistentions done this often, or even more than twice a year? Is this helpful or even safe?
I declined yesterday and said I would be willing to consider 1-2 times a year, but I wanted to continue on the Elmiron and try Pelvic floor therepy before considering any more surgical procedures.
-Rachel

[blendno14]

Hi,

I would take into consideration, than a hydro ist basically an overstreching of the muscles in the bladder. Although I know that some patient have hydros alot, I would be cautious. My muscles - in the bladder or elsewhere - do not like invasive treatments. I know some doc over here who refuse do to hydros even for diagnosis, as there is always a risk to overstrech and damage the bladder. As I just said, I know it's a good treamment for some, but nobody (no doctor in the world) can take the risk for you....

Over here hydros are not considered for treatments any more....

[patricia1]

I think ICDonna can help you alot with this question. You have to take alot into considerations when choosing this. For me hydro's never help as a therapy. You have to remember it is a surgery, there is recovery time, and it is stretching out your bladder muscle (all that you mention). If they help you and reduce your symptoms I would considering doing it when I starting feeling my symptoms coming back. I personnally think every other month is alot though. But only my opinion...:smile tee

[hoping4acure]

I have been able to stay in remission due to HYDRO's. Most doctors only recommend getting them 2-3 times a year.

My remission is due to the IC diet and HYDRO's. I get one HYDRO done a year. I wouldn't do one every month, I think that is a lot. I would consider getting a second opinion.

Good luck, and let us know how you make out.

[Trishann]

I never heard a doctor doing so many of them but doctors aren't alike. Donna did say she had 40 of them but not for sure the time span in it.

I would be checking it out with the ones that have them more often and do research before you make a decision on this.

Hugs, Trishann

[Sarojini]

I believe Donna has had 40 distentions in something like 30 years; she can give you the specifics, but she has them done once or twice a year or so.

I have never heard of having hydros that often... I am not sure that that would be a good idea, but it is something you will need to research carefully and decide for yourself. Personally, I think doing them that often would be detrimental in the long run, and wouldn't do it, but you need to discuss with your doctor, and perhaps even get second and third opinions.

[RAS6]

Thanks for the responses!
When my Doctor first brought the hydrodistention up, he mentioned he had patients who benifited from 1-2 a year.
That's why I was so taken back when he said maybe this was something we should do every two months. The only research I have done was in the IC Survival Guide, and that siad the Hydrodistention should be used sparingly for treatment (I'm assuming once or twice a year)
I am really struggling to figure out what to do about this Doctor situation. There are only 2 I can see at that office, and my experience with the first (the PA) was pretty bad. Seeing the other 3 means driving over an hour to the city. There are other urologist's within 1/2 hour or so of my house, but I will have to wait 2 months for a referall. Right now I am just going to continue the diet and Elmiron and start Pelivic floor therepy in November (about half of my pain is pelvic floor dysfunction related)
I am not even sure if this is a remission or not, I am so confused. I told the Doctor I was only getting up 2-3 times a night now as opposed to 6+ and that I am going about 15 times a day instead of over 20 and he and the nurse acted like this was a miracle. I honestly thought I would be feeling better and going less before everyone starting sining the Hydrodistention's praises!! Again, I am hoping I will continue seeing relief every day as it has only been a little over a week, but I am wondering if this is as much as I'll get from this.

[mary124]

I have one twice a year. (every 6 months) however, I'll be having one done this Thursday--2 months earlier than normal due to severe pain. My doctor will only do these 2 times a year.

[Emma's Mommy]

it took me a good 3 weeks before i started seeing the positive results of my hyrdo.....but you are headed in the right direction and that is a very good sign!!

[RAS6]

Erika, thanks for letting me know your experience! I had a bad flare (no clue why though) and ended up yesterday at the office getting a rescue treatment. I am so lucky to be able to get treatment from compassionate and informed nurses. They have more time to talk to me than the doctor. The nurse yesterday said that having a rough patch doesn't mean I won't get benefits from the Hydrodistention. She said it would take a few more weeks before we could really determine either way.
Thanks again for your response! It's nice to see other mom's my age on this board! I am 24 also and have two little girls.
-Rachel