Wetting myself

[Ncforthissss]

Hi,
NC for this as is embarrassing.

I started wetting myself about 6 months ago. Started occasionally and now happens very frequently multiple times a week. I am under a rheumatologist as have EDS but she thinks this is nothing to do with it.

My GP started me on a trial prescription which helped but then it started again and the frequency increased. They brought me in for some kind of neurological examination as they were worried I could have cord equina syndrome due to my history of trapped nerves but I didn’t have any of the symptoms. I have a diagnosis of sciatica which flares up every now and again but the nerve symptoms aren’t just in my legs. I wake up with bad pins and needles in my hands, feel like I’m being electric shocked down my spine and in my jaw. As I clearly have nerve pain all over I was wondering if my bladder could be trapped like a nerve or something.

GP was happy I didn’t have CES, upped my prescription and sent me on my way. Said he couldn’t order an MRI.

AIBU to really not be happy with this? I’m 28, have no kids and was completely wetting myself multiple times a week! The bigger prescription has worked but surely something is causing it? I’m going back today to see a different GP and was wondering if anyone could advise what to push for? I was thinking I need either a referral to the bladder clinic or a neurology referral?

Ask to be referred to urogynae at Imperial College healthcare trust. They see a lot of people with EDS and complex bladder issues, and you can go there for testing. Referral to your local hospital may be okay too but they likely won’t have as much experience with EDS patients.

Im sorry you’re going through this! It very likely is the EDS.

It’s not a bad idea to be seen by neuro too to rule out neurology stuff. Especially if you’ve never had a full neuro workup.

Btw you might want to report your own post and ask MNHQ to move it to General Health rather than AIBU. This board can be a little mean!

I have EDS and have the exact same issue!! Also have a lot of issues with pain down there too.
Im waiting to see urology. It seems a common thing with Ed’s.

Ask for a referral to Urodynamics; they specialise in continence/incontinence

Have they checked your vitamin B12 levels?

Yes! Currently sitting at around 600 but that’s because I had the loading dose a few months ago. I’m constantly in a battle with my b12 levels.

Drops to about 150, they give me the loading dose and one injection every 3 months for about 6 months and then they won’t give me any more. My B12 then drops despite me orally supplementing. Nobody is interested in this though, it’s been going on for around 10 years too.

This is very interesting and interesting to see another poster with EDS has the same thing, unfortunately. Thank you.

My rheumatologist is usually really good but assured me that it would be pelvic floor issues with EDS and not total loss of bladder control. I will mention this later.

Might sound obvious, but that the checked for a UTI? I had a really odd one once, none of the usual symptoms (burning etc), just the inability to stop myself from weeing - I was wetting myself all the time. It was a specific sort of UTI .. just thought it might be worth looking at.

I was a little bit younger than you when this happened to me. I don't have EDS but I do have a problem with the set up of the muscles and ligaments around my pelvis that means things that are meant to be tight are loose, if that makes sense.

I found pelvic physio really helpful. It took probably about 6 months to really kick in but it's been more than 20 years and 2 pregnancies since then and I've never had problems like that since. If I had to name one thing that made a difference it would be a the DVD by the physio Kari Bo. She's a wee bit scary but very effective.

I hope this gets better soon, OP x

Have you considered injections from a private pharmacy. Some people even self inject.
You're not getting enough. The spinal and neuropathy symptoms alone suggest that. Don't let them get away with fobbing you off. If you don't absorb B12 properly then you need injections for life or until symptoms are eliminated. It's in the NICE guidelines.

You’re definitely, definitely not alone. As posters are saying there could be multiple causes or issues contributing. But urinary problems are pretty common with EDS and it can definitely be up to and including full voids. I’ve known a few people suffering this. Push for them to refer you to wherever is convenient to get to geographically for you - the other poster was right that urodynamics testing is what you’ll likely need to have. That’s done via the urogynae team at Imperial but if you’re up north I’m sure there will be somewhere closer and more convenient you could go to. What Imperial does is, they ask your GP to refer you to a local pelvic floor physiotherapist service anyway (on top of the testing etc), so it’s definitely well worth asking about that too! Whack it from every direction until you have a clear answer.

Hang in there. Incontinence is super demoralising but it helps once you’re on the path to treatment, I think. I have quite bad bowel incontinence with my EDS and sometimes it gets me down but I’m also on treatment path for that now and that really has helped mentally. There are so many treatments for these issues nowadays, more than we tend to know about as laypeople.

Surprisingly, no! I did mention this as thought it could be the most obvious answer but GP said as it’s been going on so long it won’t be that.

I will push for a dip test today.

Thank you. This is a very nice and helpful message.

My appointment is in an hour and I’ve made a list of things to go through and ask for and hopefully this GP listens to me. I know it’s not normal at my age and I definitely need some investigations, even if those investigations conclude it’s just my EDS as surely this is going to be something that gets worse with age and after I have children.

I’m going to push for some kind of urology referral, ask them to check my urine just incase and again bring up a possible neurological/mri referral as all the GP did last time was check my reflexes. The nerve pain is quite possibly not related to this at all but I feel like it’s worth ruling out something more sinister.

Check out the ‘vitamin b12 wake up’ group on Facebook. It’s run by a nurse. Lots of people have issues getting enough b12 on nhs. I now self inject, they can advise where to order b12 from.

Hope it went okay, OP.

Went a lot better than last time. I was able to push back and ask a lot more questions. GP sent me home after an examination and said he wanted to consult with his other colleagues before he decided what to do. He’s just rang me and said he’s referred me for an urgent MRI to rule out anything sinister and then after that I will get a referral to urogynaecology. He also mentioned bladder training but I think they want to rule out anything before starting this.

He has however told me to stop taking the medication they’ve prescribed me to help, so now I’m terrified of going anywhere in the mean time. I hope the referral comes through fast!