Hydro or no-no?

[HollyG040303]

Short version -
I have Endometriosis. My doc thinks I have IC also, and wants to do a hydrodystention procedure. Problem being - I don't have any urinary symptoms! None! I'm 20 years old and have been dealing with the Endo and this doctor for 5 years. I'd really rather not have to go to a new doc, but I don't think the procedure is the right step.
What are the risks? Does anyone have an opinion on what I should do - to have it done or not?
Any advice would be more than appreciated!

[Briza]

Hi and welcome! :)
I don't know what your doctor is thinking but would be good to ask him some very serious questions as to why he thinks the hydro would be something you need to do??? Is he planning to do the hydro himself ($$$) or refer you to a urologist (pretty standard protocol,unless your dr is a urogyn) for this procedure?
I have read here on the board in some cases that endo can grow thru the bladder wall and cause IC/bladder symptoms, but I don't have experience with that at all (endo), so I am sorry that I really don't know what to say regarding this except ask ask ask questions. And hopefully some of the other ladies will chime in with suggestions better than I am able to offer.
It may help to find and fill out the PUF survey...any urologist's office will have one, or you can take it online on the Elmiron website (Elmiron is a med for IC), and it's also in the back of the Elmiron pamphlet, which some gyn's and all urologists should have and show those results to your gyn. Maybe an appt with an urologist to figure this out?
Really, right now I'm at a loss, but wish you the best of luck in finding the answers you're looking for. Best wishes :)

[mbhbarb]

Hi Holly,

Did your doctor tell you why he thinks you have IC? If you don't have any urinary symptoms, how did it come up?

It never hurts to get a second opinion if you are feeling uneasy about what your doctor recommends. If you feel comfortable asking your doctor what urologist he recommends, that would be a good place to start. If you don't, maybe a friend or family member could recommend someone. If you have insurance, some insurance companies will even suggest a physician in your area for a second opinion.

Everyone is different but I sure wouldn't have a procedure like that done without understanding why I need it.

best of luck

barb

[Smokey]

I wouldnt go through a hydro if you do not have any bladder symtoms, I would be scared if it could bring on bladder symtoms if you do have one. I would ask for another opinion.

[HollyG040303]

Hi and welcome! :)
I don't know what your doctor is thinking but would be good to ask him some very serious questions as to why he thinks the hydro would be something you need to do??? Is he planning to do the hydro himself ($$$) or refer you to a urologist (pretty standard protocol,unless your dr is a urogyn) for this procedure?
I have read here on the board in some cases that endo can grow thru the bladder wall and cause IC/bladder symptoms, but I don't have experience with that at all (endo), so I am sorry that I really don't know what to say regarding this except ask ask ask questions. And hopefully some of the other ladies will chime in with suggestions better than I am able to offer.
It may help to find and fill out the PUF survey...any urologist's office will have one, or you can take it online on the Elmiron website (Elmiron is a med for IC), and it's also in the back of the Elmiron pamphlet, which some gyn's and all urologists should have and show those results to your gyn. Maybe an appt with an urologist to figure this out?
Really, right now I'm at a loss, but wish you the best of luck in finding the answers you're looking for. Best wishes :)

He told me about that medication if the pathology came back positive. He's going to do the surgery himself. He did both of my laparoscopies also. What's PUF? I'm really beginning to feel like he didn't tell me everything. lol. And the Endo thing is a possibility, but I'm not having any urinary symptoms! I think he's just at a loss that a 20-year-old could have the Endo as bad as I seem to so he's trying to make it something else.

[HollyG040303]

Hi Holly,

Did your doctor tell you why he thinks you have IC? If you don't have any urinary symptoms, how did it come up?

It never hurts to get a second opinion if you are feeling uneasy about what your doctor recommends. If you feel comfortable asking your doctor what urologist he recommends, that would be a good place to start. If you don't, maybe a friend or family member could recommend someone. If you have insurance, some insurance companies will even suggest a physician in your area for a second opinion.

Everyone is different but I sure wouldn't have a procedure like that done without understanding why I need it.

best of luck

barb

He's all about statistics. 60% of women who have Endo have IC. So he thinks I'm in that 60%. I do medical billing so I know a few urologists, but I was also thinking of seeing an Endo specialist - since I'm not having any urinary symptoms. Ugh! I'm so confused and frustrated!

[HollyG040303]

Thank you!

[GriffsMommy]

I can see what Briza is saying about possibly having endo grow into your bladder. This is how my endo was diagnoised and this when I had my first pain bladder issues. I had an in office cysto where they found the mast and then a couple days later knocked me out to remove it and have it biopsied.
I know that in my case when my gyn suggested IC I had never even thought of it and never realized that my pelvic pain could be bladder related. Once the dr pushed on my bladder and I went off the table then I was better able to tell where the pain was coming from and that it had been the bladder. I have ALWAYS peed more than other people so in regards to bladder symptoms I didn't think anything about them because I had always gone alot. Once I tried to get my normal 8 glasses of water a day I realized it made me pee non-stop and that really convinced me that I had IC.
BUT, if you really don't have any bladder symptoms then I would tell the dr you don't want to do a test that you don't think is nessecarry.

[Briza]

I know that in my case when my gyn suggested IC I had never even thought of it and never realized that my pelvic pain could be bladder related. Once the dr pushed on my bladder and I went off the table then I was better able to tell where the pain was coming from and that it had been the bladder.
BUT, if you really don't have any bladder symptoms then I would tell the dr you don't want to do a test that you don't think is nessecarry.

Same for me...I had NO idea the pain was coming from my bladder and this was going on almost a year b/f I was diagnosed...even when my current gyn felt my pelvic area the entire area was aching, burning, sharp pains, even my ovaries were sore, not just my bladder, and it took me even longer to correlate which pain was coming from where and that it was all originating in my bladder.

I'll post a link to the PUF survey...it helps determine if you are having possible IC symptoms...

[Briza]

http://www.orthoelmiron.com/orthoelmiron/prescreen.html?host=www.orthoelmiron.com

[ICNDonna]

If you have concerns, by all means get a second opinion.

Donna

[ABliske]

I hydro isn't as bad as a laparoscopy just to let you know, but it's not pleasant. I probably wouldn't do it if your symptoms don't seem to point to it.

Do your symptoms include really bad pelvic pain that doesn't revolve around your period? Maybe that could be IC, although I think you'd have urinary symptoms too. I thought for sure the doctors would say I had a UTI, then after several negative tests I went to 2 OBs. They thought it was endo. I almost even went on hormone therapy! Then, I saw a 3rd OB who saved me by referring me to a uro.
Were the results of the laps very severe? I'm assuming since you've had 2, he found a lot to clean out. I don't have bad endo. In fact, I think what they found was "normal" - just a few spots. However, I do know that it's really bad for some people. One woman my sister's friend knows has a category 4 case and even switched to a vegetarian diet because her endo caused bowel problems.
Best wishes for a good outcome! I hope that it's not IC for you!!!

[HollyG040303]

I hydro isn't as bad as a laparoscopy just to let you know, but it's not pleasant. I probably wouldn't do it if your symptoms don't seem to point to it.

Do your symptoms include really bad pelvic pain that doesn't revolve around your period? Maybe that could be IC, although I think you'd have urinary symptoms too. I thought for sure the doctors would say I had a UTI, then after several negative tests I went to 2 OBs. They thought it was endo. I almost even went on hormone therapy! Then, I saw a 3rd OB who saved me by referring me to a uro.
Were the results of the laps very severe? I'm assuming since you've had 2, he found a lot to clean out. I don't have bad endo. In fact, I think what they found was "normal" - just a few spots. However, I do know that it's really bad for some people. One woman my sister's friend knows has a category 4 case and even switched to a vegetarian diet because her endo caused bowel problems.
Best wishes for a good outcome! I hope that it's not IC for you!!!

Mine was stage 4. Both times.
And I don't have a period, so the pain is just all the time. I'm on Lybrel (birth control that stops your period.)
I don't know if I'm going to have the hyrdo done.
It seems painful, and I don't think I have IC, so I don't see the point. I think I'm going to get a second opinion.
Thank you very much!