Hello everyone! I’m new here! I am 32 years old and have been dealing with ms since 2012. Over the last two years, I’ve been struggling with a challenging symptom—constant urge to urinate, 24/7, even right after using the toilet. Although I haven’t experienced leakages, this symptom significantly affects my quality of life.
In the past five months, I transitioned from Gilenya to Tysabri. Despite consulting various urologists and trying medications like Betmiga and Solifenacin, I’ve seen no improvement. Even during moments when the urge to pee is milder, I also experience peculiar sensations in the perigenital area—for example, cold sensations in warm water, a constant wet feeling in the area and pressure.
I really want to know if anyone faces the same symptoms. Noone in my environment understands what i am facing and noone believes me. Everyone thinks it’ s all in my head.
Thank you very much, a desperate ms patient
(I come from Greece, so I am sorry if my English is not very good)
I haven’t had the peculiar sensations you mention, but I have had the same bladder difficulties (urgency, constantly needing to go etc.). A physiotherapist told me to imagine the bladder as a jug where the nerves at the bottom don’t work, but the nerves at the top do. As the bladder is filling up, you don’t know it is because the lower nerves are not working. Then when the urine gets near the top, where the nerves are working, the bladder recognises that it’s full and you need to rush to the toilet.
I was able to manage that by using an intermittent catheter. These catheters are small and can be easily carried around in a bag (like you would a tampon). I would use one throughout the day, emptying my bladder first thing in the morning, maybe mid morning, lunchtime, mid afternoon, evening and at night. I don’t do it now for other reasons, but self catheterised for over ten years without issue. Your MS nurse should be able to pass you to a continence advisor who can show you what to do.
Hi Georgia, I am a man but yes, I do go through times when I frequently feel the need to pee ( this used to be a major inconvenience when I used to drive several hundred miles to see my Dad and had to stop at every service station to use the toilets but would find that in fact i didn’t pee). In some strange way I have found that relaxing can help reduce the feeling that I need to pee even when I have just emptied my bladder. ( I thought it might all be caused by prostate problems but I’ve had that checked).
If I may say, your English is good and I wouldn’t have known that you are not English!
The daily bladder leakage is the bane of my life: every cough or sneeze results in a dribble.
I did have an appointment with Urologist scheduled but, that got scrubbed after latest NHS walkout.
Good job there are incontinence products, for convenience.
Hi, yes. I go through periods of time when I have some near misses! And then moments later need to go again. And recently, i keep looking at my clothes and wondering where the water has come from. But - no water. It just feels wet. Weird!
Thank you all for your responses! I am now trying Lyrica, to see if the strange sensations are neuropathic. I hope to have good news soon!