I wanted to ask if anyone else has the same issue, my assumption is that there is probably zero link between the two with TN. I have some issues that are similar to MS but TN was the only thing diagnosed at this time.
Shanna13, could you elaborate on the symptoms with your bladder ?
1 Like
Shanna, since you haven’t mentioned what issues you are having with your bladder I will just tell you my own experiences. Besides TN, I also have Lupus, Sjogrens, Raynauds, etc. Many years ago my bladder just stopped functioning and I had to have nurses come to my home to catheterize me, this went on for almost a year…until one day it just started working again. I saw a urologist who I believe at the time said it was something neurological, I don’t remember the terminology…it’s been so long. My bladder still has a mind of its own and many times I have to wait patiently for the flow of urine to begin or it will come in small amounts or I do not feel like I have emptied completely. As with all of my health issues, it is what it is and I have just learned to deal with it. Please let me know what bladder issue you are having.
1 Like
Sorry for the delay in responding. To be fair, I had bladder surgery around the bladder neck 4 years ago. I have incontinence urge, stress, and possible overflow or reflex. I have done every medical test available and my urologist gave up. I have access to catheters and sometimes do intermittent ones. Some examples are frequency going probably 20X a day, sometimes more, sometimes less, not feeling my bladder at all especially sitting down/days where I am less active, bladder spasms, and leaks. I currently wear incontinence pads because any time I am more active or away from home it is guaranteed to happen. The urologist has stated they did all they could.
You asked if others with Facial pain also have bladder issues if I understand correctly
Many years ago I started down a path of multiple neuropathies, immunity issues , chronic pain and Bowel and Bladder issues .
Facial Pain has been the most onerous issue . For years the pain was so severe the only reason I did not commit suicide was my religious beliefs . For many years I also suffered with Interstitial Cystitis . Elmiron helped but I also had to follow a strict , boring IC diet which did not help my immunity issues as it limited my nutrient intake .
I stopped Elmiron and now have Eye issues that may or may not be linked to its use .
I have Pelvic Floor dyssenergia which affects Bowel and Bladder function . I no longer have normal bladder sensation when it comes to Volume but surely can still feel pain
The one Hope I can offer is things have not stayed static . Some serious issues just improved on their own. New ones may develop. But the fact that things can change brings Hope .
You said you have had many medical tests. I would suggest seeing another Urologist —specifically one who sees a lot of Women— if possible . And perhaps evaluation by a GI doc for Pelvic Floor Dyssenergia if you have not had that
There is also Pelvic PT. Some Urologists scoff at it .
That is why I suggested seeing an Urologist who has a large female patient population—perhaps they will know the Good Pelvic Floor PT people
Pelvic PT can help men as well as women. Skill levels vary so if you do not benefit the first go round try another PT . I have been surprised by the difference in approach between different Pelvic PT practitioners . Some are Gung- ho for Biofeedback . Others say they think it is not that helpful ( I have been to many ).
By all means skip the docs who say to just get use to a pad …that may be true but I would not give up yet . Keep searching if you are able.
1 Like
I found that my frequency and wetting was cause by a medication. Once I stopped the RX Lexapro, my symptoms went away. At first I thought it was the Gabapentin but apparently not. I Had alot of kidney infections ( 8 in one Year) when I was on Lyrica. These were not bladder infection but all were kidney infections - severe back pain, fever, and blood in urine. Do you think your meds for TN could be part of the problems?
1 Like
Sidenote: if anyone wants to talk about their bladder issues or TN feel free to message me.
Its entirely possible but I had bladder surgery a few years ago and it’s possible since the doctor did not warn me about side effects this is part of it. I’d say its urge and stress combined but it usually happens at work under more stress. I have always had these issues but I feel on Gabapentin my body is more reactive or perhaps I’m drinking more water on it. I never thought about kidney issues but I will consider seeing/visiting the urologist. My other option which makes me cringe is doing indwelling catheters at this point.
I have stress and urge incontinence that has been quite annoying (along with ATN). I do think that the two can be related though I also have a history of injury to the area. I have found that foods that irritate my mouth and stir up ATN, are the same ones that are listed as bladder irritants. Makes sense if you think about it.
I’ve managed to get some control by–cutting back on bladder irritants (no coffee at all, even decaf, very little chocolate, careful with citrus, tomatoes, carbonation). Quitting dairy has also helped. I use pads at all times, and follow a voiding schedule. Poise removable pessaries have been a godsend for me. I have a regime to make sure I’ve completely emptied the bladder before bed, and I rarely have to get up at night with that.
I hope you can find ways to adapt and deal with it successfully. Doctors don’t always have great solutions.
1 Like
Hi Shanna13, I too have similar bladder issues and I believe it is caused by my TN and I have been to my Eurolgist over 6 times, she had put a cocktail of 5 different medications into my bladder to try and calm it down, but with little did it work. Im still on Lyrica which I just started at a low dose 25mg 3x a day. I also use lidocaine on my gums and hemp oil to rub on my tempo and behind my ears. Other than that im waiting to get my surgery MVD but due to covid were waiting on the hospitals here…
1 Like