Help needed

[mcrabb73]

Hi Everyone-

It has been awhile since I have posted but I need some help/advice. My first urologist did an in office cystoscopy said my bladder was fine but based on my symptoms I should have surgery to impant the interstim device.

I am now seeing a NEW urologist to get a second opinion. I feel totally lost. He did an internal exam, ultrasound, and urine tests to outrule cancer, etc. From the internal exam he said he feels that I have pelvic floor tension myalgia - which he said (I think) that is in the realm of IC, almost like another name for it (I could be wrong here). Anyway he put me on amitriptyline 2 days ago. He is also talking of possibly doing a hydrodistention. Would somebody please help??:help:

Have any of you heard of pelvic floor tension myalgia? My major symptoms are urgency and frequency. Should I be in physical therapy? I am terrified of a hyrdo... I don't know who to talk to...

Thank you.

[VickiB]

Your first uro seems to be moving a bit fast for me, wanting to implant an interstim device at this early stage! Of course I'm not a doctor, but it seems typically other less invasive methods are tried first.

I have heard of pelvic floor tension myalgia, and have the impression it can go along with IC. This is a link to a post where someone mentions having both (in post #7): http://www.ic-network.com/forum/showthread.php?t=50736&highlight=%22pelvic+floor+tension+myalgia%22 Physical therapy can help.

I can understand your reluctance to do a hydrodistension as I tend to shy away from any invasive procedures myself. But I do know that beyond the diagnosis aspect, there are some who find this procedure actually helps relieve their symptoms. My best suggestion is to read up on these procedures and continue to examine other's experiences (like you're doing with this thread), then go with your gut feeling.

I know this stage you're at right now is confusing! Take your time and soak up the information available here. Things will work themselves out in your mind.

Vicki

[mcrabb73]

Thanks Vicki!! :)

[MissMal]

Just to add to that last post... I too am quite scared of invasive procedures. However, I had a cystoscopy with hydrodistention last year and it was a piece of cake!

I was pretty nervous, but the time before I was under anesthesia was much worse than after (because I was working myself up for something much worse than was actually happening). Upon waking up from the procedure, I was able to use the restroom with about as much burning as I get from a mild UTI.

My bladder was a little spasmotic for the next couple of days, but no major problems. You just have to take it easy.

Overall, if your doctor is recommending it I would say go for it! An in office cystoscopy is not always as good of an indicator as one with hydrodistention. I wish you the best of luck, and feel free to message me any time!

[BT2008]

I agree with Vickie and find it extremely odd that your first uro went straight to suggesting the InterStim--especially since you had not tried anything else. There are quite a few non-invasive options out there for urgency and frequency, such as Amitriptylene, but there are others as well.

As far as the hydrodistention is concerned--it is a lot less invasive than an implantation of the InterStim, and if performed by a competent surgeon does not even come close to the risks and possible problems of an implant. You might flare for a few days after a hydro, but a lot of people get a lot of relief from the procedure and gladly have them repeated at certain future intervals. Our staff moderator, Donna, gets a lot of relief from them, so maybe she will chime in soon.

I suggest that you see if the Amitriptylene helps, and if it does not do so to your satisfaction then move on to some of the other treatment options for your symptoms. And it may require a combination of more than one. Then, as a last resort, research and start to consider an InterStim. I have never had the InterStim and out of everything I have read it oftentimes helps for a while, but in many of the cases I have read it ultimately causes more problems than the patients had to start with. There are quite a few people active on the forum right now who either have one now, or have had theirs removed, so look in the InterStim section of the forum and read, read, read all you can about it.

As far as your comment regarding "pelvic floor tension myalgia" being "almost like another name for [IC] (I could be wrong here)" I think you (or the uro) is most definitely mistaken! While a lot of IC sufferers also suffer with pelvic floor disorders as well, these are usually secondary to the IC--not the same thing as. I have no pelvic floor problems at all yet I have a severely diseased bladder because of IC.

Hopefully the Amitriptylene will work for you, because that would be a very simple and inexpensive solution! Good luck!

Hugs,
~Beth

[ICNDonna]

It is my firm opinion that an interstim should not be considered until all other available treatments have been tried without success --- even those who are happy with their interstims will agree.

I hope you get some relief soon.

Warm hugs,
Donna

[mcrabb73]

Thanks everyone for all of your help!! I really appreciate it. I know I can always come here and all of you understand what I am going through...and that means a lot.