Urethral dilation anyone??

[Onfire]

So my new dr has run lots of tests and he does not think I have ic. He thinks I may benefit from urethral dilation and is doing his own cystoscopy to determine what is going on. I had an MRI that said I have slight urethral thickening and bladder looks normal.

I started the IC diet the same time I started Myrbetriq. I've had a good 3 months bladder wise with symptoms greatly reduced. Unfortunately the myrbetriq is now not agreeing with me. Hopefully once I stop, these horrid side effects will leave and I'll find that it's the diet that has helped. Or if it is just my urethra than would the diet help that?

My question is would this urethral thickening be the cause of my symptoms? Would dilating it rid me of this? Is it safe?

I see him in a couple of weeks and it's all just weighing on my mind.

Thanks.

[icnmgrjill]

Re: Urethral dilation anyone??

Interestingly, I've been working with another patient who had a urethral diverticulum that basically covered the exterior of her urethra. It was a long skinny pocket of infection that they found on an MRI. She suffered for ten years with this urethral pain with no explanation until they discovered it late last spring. She's now through surgery and feeling amazing and so much better.

Sometimes muscles thicken... especially if you are straining. They can get contracted and hard, like when you pop a muscle in your arm. So the other thing that I would ask for is a pelvic floor assessment to see if that could be involved.

Back twenty plus years ago, dilations were done routinely but today they are considered quite aggressive and are really only used when the urethra is very very narrow. I had many as a child with my early symptoms and my urethra was so narrow it was like peeing through a needle. But today, rather than forcing it open, they usually ask "why is it tight"... and that usually points back to pelvic floor muscle issues. They then recommend pelvic floor therapy.

Lastly, it's worth considering hormones... estrogen causes the mucosal layer to thicken... so are you taking birth control? estrogen or other hormones?? I think he pretty much needs to take a look at it to see if any surface variations are present.

It's a puzzle!!! I would ask him "What can make it thicken?" and also ask for a pelvic floor assessment. Make sure you watch our video "The Five Subtypes of IC"

Jill

[Onfire]

Re: Urethral dilation anyone??

Interestingly, I've been working with another patient who had a urethral diverticulum that basically covered the exterior of her urethra. It was a long skinny pocket of infection that they found on an MRI. She suffered for ten years with this urethral pain with no explanation until they discovered it late last spring. She's now through surgery and feeling amazing and so much better.

That's what they suspected I had. But not the case. They found cysts in my vagina & my 2 hips have labral tearing. I'm not even 40 but I feel 80!

Sometimes muscles thicken... especially if you are straining. They can get contracted and hard, like when you pop a muscle in your arm. So the other thing that I would ask for is a pelvic floor assessment to see if that could be involved.

I've had a pelvic floor assessment. My muscles are tight. I did physio before my hysterectomy and then they cancelled my physio as they thought they had fixed the problem by separating my bladder from uterus etc. I definitely strain to urinate. It just doesn't want to come out at the end. He may not do the dilation seeing as its only slight.

Back twenty plus years ago, dilations were done routinely but today they are considered quite aggressive and are really only used when the urethra is very very narrow. I had many as a child with my early symptoms and my urethra was so narrow it was like peeing through a needle. But today, rather than forcing it open, they usually ask "why is it tight"... and that usually points back to pelvic floor muscle issues. They then recommend pelvic floor therapy.

Aggressive? I don't like the sound of that. So its not something routine that will fix this issue. Do you think I should consider more physio? All she got me to is when I'm sitting imagine my pelvis is like melting chocolate. Then she would just stretch me out down there. Is there more they should be doing? If so I'll ask for a different phsyio and start again.

Lastly, it's worth considering hormones... estrogen causes the mucosal layer to thicken... so are you taking birth control? estrogen or other hormones?? I think he pretty much needs to take a look at it to see if any surface variations are present.

I definitely am estrogen dominant as my breasts get unbelievably sore. I am not taking anything for hormones other than a tablespoon of flaxseed daily. I thought my hyster in Feb would have helped with this but no. It's definitely been worth it though as my poor bladder was twisted in there.


It's a puzzle!!! I would ask him "What can make it thicken?" and also ask for a pelvic floor assessment. Make sure you watch our video "The Five Subtypes of IC"

I've read that repeated infections can make it thicken. That's definitely the case for me previously.

I guess I'll have to wait to see him now.

[ICNDonna]

Re: Urethral dilation anyone??

Back in 1975, when I was in the process of being diagnosed, I had a series of urethral dilations --- my urine stream was compared to a pencil lead. I have to say that I am one of the lucky ones --- I haven't had to have the procedure repeated. I will never know for sure if the dilations were necessary or if it was my IC that was the problem.

Jill has given you some excellent information and advice. I will just add that if you have a cystoscopy, it helps if you can relax. What I do when I have one is to concentrate on breathing slowly and deeply and consciously relaxing my muscles.

Sending healing thoughts,
Donna

[Onfire]

Re: Urethral dilation anyone??

Thanks Donna. I've already had a cystoscopy under general anaesthetic 4 years ago and they said I had an infection. That didn't clear for a year. I've also had to urodynamic studies. I have slight voiding issues. They couldn't find anything else so said IC.

I'll keep praying thanks

[Trei6y1952]

Re: Urethral dilation anyone??

I had horrible voiding issues, with 10 dialations icluding a urethroplasty. It made my voiding issues worse.

[Onfire]

Re: Urethral dilation anyone??

Hi Trei
I had my dilation done back in October 2017. It definitely made my stream/flow a lot better. They burnt all the scar tissue off the bottom of my bladder as they found I have trigonitis. My bladder gets to 200ml and it starts to hurt as it thinks its full.

They've told me there is nothing more they can do for me but to give me pain killers to help me to stretch my bladder. I only take them when its really bad.

I've resorted to an extreme diet which has helped a lot. I am hoping that I will continue to heal.

[icnmgrjill]

Re: Urethral dilation anyone??

Yeah... dilations are very old school and rarely done now unless the urethra has narrowed to the point that a patient simply can't pee. Rather than forcing the urethra open, doctors are asking "why is it tight?" and, often times, it's due to tight, hypertonic pelvic floor muscles. Thus, rather than being dilated over and over and over which can hurt like hell (I had about 100 of these as a kid), they send patients to physical therapy to address the muscles instead. Yikes!!!

Jill