I’ve been having lower right sided pelvic pain for many years, I’ve had scans and blood tests before and nothing found. I’m just about to have more scans as the pain is getting worse. It’s worse at night and I’m woken up every hour or two with it, I then have a wee (tiny dribble and my bladder takes a while to release it) that relieves it slightly but not completely. The pain continues during the day but not as bad.
I’m wondering if this is an MS thing. I have spasticity in my legs which is worse at night, so could this be spasticity in my pelvis somewhere? Has anyone experienced similar? I don’t have other urinary symptoms apart from being a bit frequent. How can I find out if it’s an MS symptom or something else?
I wake up with lower back and pelvic pain most mornings, doing physiotherapy exercises can help alleviate the spacticity/stiffness, I do mine every morning and it does help.
I found cutting out alcohol/caffeine/fizzy drinks (bladder irritants) has stopped my bladder leakage completely.
Regards,
JP
Thank you for your reply. I have tried cutting those things out (don’t consume much of them anyway) and it made no difference to the pain. I’ve tried pelvic stretches too and stretch every day. If I knew it was an MS symptom I could cope with it but I can’t find out for sure!
Hi perky
Have you been seen by Urology?
No, I haven’t seen urology. I have an appointment to see a community continence person in January but I don’t have any other bladder issues apart from waking several times in the night with pain and then needing to wee. It’s not the pain of a full bladder, and I only do a tiny wee, but having a wee eases the pain enough for me to go back to sleep.
It’s probably a good idea to run it by your MS nurse/Physiotherapist, I’ve found you can attribute a lot of symptoms solely down to multiple sclerosis but, then again there are some symptoms that may actually be caused by another medical problem/s.
It would be worth getting it checked out with your local Urology team; my experience involved waking several times a night to squeeze out the tiniest dribble, going to the toilet almost hourly to try and squeeze out a bit more - X amount of water in should equal Y amount of pee out, and it wasn’t. I didn’t and still don’t have any sensation/pain of a full bladder. Urology found out I had severe urine retention, because of MS damage I couldn’t feel it properly and I could not empty my bladder properly - hence multiple trips to the loo day and night to try to offload the pee.
Oh goodness that sounds scarily like me. What did urology do about it? I thought urine retention would mean other symptoms, like infections and pain and burning when peeing?
Due to my MS, I couldn’t feel it when I had a UTI, first signs- cloudy pee with an awful whiff! Despite needing antibiotics for the multiple UTIs I had over the space of 3 years, my GP was reluctant to refer me to Urology - took me having a bit of a meltdown over my 4th lot of antibiotics for UTI in a year to get them to refer me.
Not feeling the peeing of razorblades is one of very few upsides to having MS.
The Urology appointment involved the usual medical history talk, then having to pee into their special container that measures how much and at what rate you pee; then they do an ultrasound to assess how much pee is left in your bladder - the plan was then to introduce saline solution into the bladder and pee again with another ultrasound.
I peed in the special container and the nurse noted how (little) I had managed; she then did an ultrasound of my bladder, looked a bit shocked, and re-scanned my bladder - there was still 700 ml in there (should be less than 100 ml after peeing). The Dr checked everything again, then rushed me down to the renal unit to get my kidneys scanned to check if they were OK (luckily they were fine).
I was then catheterized to empty my bladder - that had to stay in for a week to help my bladder shrink back to a normal size - not the best, but far from the worse thing I’ve had to put up with.
I then had to learn how to self catheterize - nowhere near as bad as it sounds; to start with its a bit awkward and fiddly, but once you get the hang of it, it is easy. I have a supply of catheters, wipes etc. in a pouch in my bag, just like having a supply of pads or tampons.
To start with I was catheterizing 6 times a day, now I usually do it 2 - 3 times a day - and definitely before going to bed - knowing that my bladder is empty.
I’ve only had one UTI since I started the ISC (intermittent self catheterization) - my own fault, I didn’t pack enough ISCs for a trip, ran out and ended up with a UTI because of retention.
Ask your GP for a referral to Urology - they can check that your bladder is doing what it is supposed to be doing.
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Thank you so much for your reply Theresa, I am going to ask my GP to refer me to urology. My lower stomach is really sore and bloated today. I’m sorry you’ve had to go through all that, I’ve never been catheterised and have always dreaded it for some reason!