Will Cystoscopy with hydrodistention make me worse?

[cindy123]

I have issues with pelvic pain and frequently urinate for years. I'm having amitriptyline 10mg every night which helps great for the pain. I'm taking Elmiron for 9 months which doesn't help. I had instillation which doesn't help either. Now I'm fine with pain, but need to go to bathroom every 40 minutes. I scheduled Cystoscopy with hydrodistention next month but I'm very hesitating if I should have it. While I still can manage my condition mostly now, I'm afraid that Cystoscopy with hydrodistention will make me worse, has this ever happened? Also my Doc said that if it helps it will only helps for 3 months, so is this worth the pain and risk to have the procedure?

I'm new here and have read some of the threads, it sounds that the procedure is really painful. I hope to get more advice and thanks in advance.

[Landish]

It wasn’t painful for me. It was with general anesthesia. When I awoke I felt pain in my urethra to urinate the first time but they gave me a painkiller and this worked immediately. The next day I was like a new women, I felt almost normal. This is what helped me most but for a small period of time.

Risk? I think there are always risks with anesthesia general in all procedures.

Good luck

[ICPrincess]

Cindy I just posted my whole experience earlier today in a thread called "My Hydro" so maybe that will help shed some light for you. I know you are scared and trust me I've been there. I really believe that it's a worthwhile procedure. It really can help. My first one put me in remission for many years and then it came back in 2005. The one I had done Thursday has already made my bladder feel better which is amazing for me since I am usually worse for a few weeks (I really think my taking an antibiotic has helped to cut down the pain and inflammation and any infection that might have otherwise sprung up so you might want to consider that and discuss it with your doctor). I really do believe that a lot of the pain comes from infection afterwards as we are so super sensitive to bacteria.

My Uro also gently stretched my urethra which he felt would help me enormously and he was right. It has! At first the idea sounded medieval, but it really has helped ease the pain! He said it also releases a lot of toxins. All I know is that I do feel better and so for me it was well worth it (also they can get in and assess your bladder better than any other method and can take a biopsy to see if there is anything serious going on). When they stretch the bladder by doing a hydro, it helps to desensitize it and therefore the theory is that you will feel less pain and maybe even go into remission for a while.

Good luck to you. Just hang in there and realize that the first day peeing will hurt, but it really does pass. It was gone for me after 24 hours but that first day was not fun. You just gotta get over that initial hurtle. Don't be afraid to ask for pain meds and antibiotics if you want that added protection. You have to be your own advocate. Hang in there. :)

[leelee88]

You might find this link interesting..

http://www.ic-network.com/forum/showthread.php?t=39310

[Uzes]

Did I read correctly that your 2006 hydro/cysto made your bladder rupture???

[ICNDonna]

A rupture in a bladder during hydrodistention is extremely rare, but it can happen. I have had this procedure over 40 times and it has helped me each and every time for anywhere from six to 22 months. It has now been 15 months since my last one. If/when my symptoms become severe again, I will call my uro and schedule another.

Warm hugs,
Donna

[cindy123]

Thank you all for the information.

While I'm reading more, I'm more uncertain. So I decide to cancel my cysto. with hydro. next month and postpone to when I know more about it.

Thanks all again, I'll read more about your stories. And I feel supported to see so many people have the same issue as me here.

[mary124]

I usually have a hydro every 6 months or so; depending on pain levels.
I have had quite a few, enough to be known at the outpatient center as the "Hydro Queen" as most all of the nurses/doctors know who I am when the see my chart.
I work full time, and schedule these either on a Thursday or Friday so that I have the weekend to rest, usually feel better in a day or 2 and am able to return to work that Monday.

[Snowden1]

Mary,
Just wondering how long these last for you and what kind of relief you experience. Do you still follow the diet or can you eat more? Does this get rid of the pain?
Teresa

[Snowden1]

Mary,
Just wondering how long these last for you and what kind of relief you experience. Do you still follow the diet or can you eat more? Does this get rid of the pain?
Teresa

[leelee88]

Some people have success with the Cysto/hydro but yes my bladder did rupture during the procedure.. But just like with ANY surgery it comes with risk..You just have to talk with your dr and read and get all the facts..I am NOT glad it ruptured my no means. But I am glad that I got a diagnoses out of it..And like Donna said this is VERY rare for it to happen..

[skye321]

I had one about a week ago. I was in extreme pain that day and a couple days after. Latly I have been feeling better :) well it still hurts more when I pee but my urgency and frequency are better yah. I hope it lasts a long time. I am even concidering asking my uro if I can keep getting them.

[serinity]

:hi: I've had 2 cysto/hydro's an both were compleatly differnt experinces. The thought of any procedure is scary so many things cross your mind. You should have a uro you feel compleatly comfortable with, someome you feel listens to you and respect your body to treat you delicatly. My procedures were done by 2 diff doc's one I trusted and one I had just met and he ony got to do the procedure because i knew it was nessesary so i took what i could afford. But he wasnt gental even after I told him my backgroung and how much my bladder can hold.
Basicly, take your tyme and ask all the questions you have, make sure you get you answers. Dont cheat yourself or mistreat yourself by lettin any docter you cant trust or that wont listen to you do your procedure because that can be your first signs of how he will treat you while you under.
The procedure can have many good outcomes but it would be a lie if i said you would wake up and feel amazing. No matter if you have a remission or not there will probly be at least two days of recovery. Mines has not been that good but all of us react diff to every treatment & every procedure so you cant go by what we went through but weigh your opptions and research as well as askin questions to your docter. I wish you luck & will be praying for you.:angel: