I’m 36, had MS since I was 26. Have been lucky to have had it fairly mild, bad first episode optic neuritis and vertigo. Second episode 3 years later not too bad, slightly drooped mouth went within a few days. This was my last proper episode, in 2009. I have, like many newly diagnosed, been very anxious about having MS (and it took 3 years to get diagnosed), but I’ve learnt to accept it and always been grateful my most regular symptoms are a bit of numbness and tingling and vertigo if I haven’t slept well for a period of time. I have mild relapse remitting and always hoped I could be diagnosed with benign. I always thought thank god I don’t have any symtpoms relating to bladder or muscles.
Last few months I’ve had very painful UTIs back to back. Took anitbiotics but kept coming back. Always been prone to them but, maybe once a year. Went to MS Clinic today and they did a scan and told me my bladder is not empying itself fully. They suggested a intermittent catheter, using it about once and day. I just burst out crying, I’m 36, newly single and feel like an old lady. I’ve had extra bad numbness in one hand hit me and stayed for a month now which they said wasn’t a new relapse but recurring symptoms, brought on by UTIs. I’ve also had everything go wrong in my personal life since xmas eve (new boyfriend of six months turned physically and emotionally abusive, ended very painfully, then lost my job, then my gran, my only family member, is about to die, discovered potential fertility probs and haven’t had children yet, now all this!). Been to see a gyno and got fibroids and a cyst on my ovary which appears to be endometriosis. MS nurse said these growths may be pushing on my bladder.
Sorry for the woe is me post! MS nurse tried to reassure me this won’t be permanent and I can retrain my bladder. I’d be keen to hear about anyone who’s had this bladder problem and has seen an improvement? At least for a few years etc? I’m sorry but I’d be grateful to only hear positive stories right now, not tales of it getting worse and worse please!
I am a fella so a touch different regarding the plumbing. However, the MS and ‘bladder’ nurse said I was retaining and suggested ISC. Ok so I followed their advice and promptly got 8 UTIs in a year.
Right I’ll stop then and use a bend forward bottom out technique. I have had no UTIs since I stopped ISC 3 years ago.
Everyone is different but that’s my little bit of light for you.
Firstly, I must say how sorry I am to hear of your situation.
With PPMS, I’ve had a worsening case of weak bladder and all it’s problems. I’ve always resisted a catheter because of the likelihood of infection; even the smallest chance is not acceptable. On the other hand, I know of people it’s worked for. Try looking up the appropriate section on this site.
As a bloke, it’s easy to carry and use a convenience bottle. I have to and it really helps at home due to poor mobility. Outdoors I will arm myself with an incontinence pad and a discreet cleanser. It’s not perfect but it minimises the inconvenience.
As a result of making such provisions, it has removed the anxiety from getting out and about. I’ve actually started doing long train journeys to see friends and relatives in my wheelchair.
If I were to think about it closely I might become depressed thinking about what I used to be like but now is now and it’s what I have to do. MS is a powerful beast but we’re the ones with the brains and there are so many ways of dealing with things.
Hi Sorry you are feeling so low. Ovarian cysts will most certainly press on your bladder. My continence nurse found mine last November, I was bloated, couldnt pee properly & wasn’t emptying my bladder. I had thought it was to do with my MS, problem still ongoing but I feel better knowing what it is to be honest. My MS nurse didn’t find it though, & I don’t mean to sound awful, but the MS nurse I’ve got is lovely, but does seem to be almost obsessive about bladder problems, chances are the ovarian cyst will clear up on its own, they can treat fibroids & my sis who had Endometriosis has had 3 children since. Gyni will be best 1 to sort it, sometimes MS is used to cover our illnesses, but its not down to it all the time. Hope you feel better very soon Tracey x
Thank you Tracey for that info, that has given me some hope. I think I’ll tell myself my bladder probs are being caused by my gyno probs and try minimise the anxiety I feel about MS-related bladder problems and it getting worse. I’ll be getting treatment for gyno stuff (got to choose between meds to shrink or medina coil) and I’ll be going back in 2 months to see if they’ve all grown and if surgery is needed. Guess I should do this catheter thing too, I just hate the idea of it at 36 it really freaks me out. That’s good to know about your sister. Comforting reply, just what I needed, thank you! x
Hi Steve, you sound like you have a great positive approach to these challenges. It’s all any of us can do, get on with it and smile as much as you can!
Keep the faith lovely, sure it will work out, like I say, not everything is MS related, I turned down the catheter, sure the MS nurse is on commission! Anyway, there is always hope, Im having bloody bowel probs at mo, nightmare these toilet things, ah well, we,ll cope, you take care Tracey x
Hi Claudia, I’ve been using catheters since I was 32 (43 now) and I’m so glad I’ve been able to. It’s allowed me to empty my bladder instead of having that constant feeling of needing to go because you never empty properly. I do get infections from time to time but not emptying properly will also cause that. I felt a bit upset at first too but they’re really discreet and you will soon get the hang of them. Good luck xx
Hi Claudia,I’m new on here was d x last year it only took them years before they found out about the m s and so the damage is done I feel that we can’t turn the clock back so as I say
The next chapter in our lives is evolving.coming on here has helped me to deal with
My m s in a better way.it really opens your eyes and mind to the actual realities that m s can and does affect each and everyone of us in our little way.sorry things have been a bit of a $&#! For you all I can say is keep your chin up and soar above it all take care xx
Claudia,I meant to say that my granddaughter has been self catheter for last 3 years.
She is now just 16 she had to have 2 large tumours removed from her pelvis so if she can do this at her age then I feel that there is age and experience on your side.
Hi Claudia, I’m so sorry to hear of your problems.
I had almost 2 years of back to back UTI’s they knocked me off my feet. Along with not emptying… I leaked all day… I was like a mouse.
After test after test I was told I needed Botox. OK I’ll try anything to to stop the infections and get me out of pads… thank you.
Had my Botox in October. Not had one UTI. I’m bone dry. I’m back in my nice panties.
And the best part… I can pee like a man, so if I’m out and have to use a public toilet I don’t have to hovver ( I’ve never put my botty or clothes near public loo seats )
I use a compact catheter, bit like a mascara applicator. ( I keep one in my makeup bag ) Only takes a second to insert, no dribbles when finished. Its my new BF and it’s given me part of my life back. I was horrified at the thought of using one, but, it’s quick, easy and I don’t feel any older for having to make a small change to toilet routine.
That’s an impressive list of crap you had landed on your plate within a few months. There is anecdotal evidence that stress creates or increases the symptoms of MS. However the word ‘stress’ doesn’t seem adequate sometimes. At the very least you have got out of a parasitic relationship.
I’m afraid I can’t tell you something positive about bladder weakness but I wanted you to know that I read your post and can understand how you feel.
Yes I suppose it’s just the initial shock of it! Glad you find relief. Hoping mine is a temporary one off thing but like all MSers if it becomes regular then I’ll just have to put on my big girl panties and deal with it, like you!
Thanks Rosie. Sorry to hear it took so long for you to be diagnosed, that’s tough. It’s never too late to improve your diet and exercise etc, take vitamin D to slow/halt progression. Take care.
Thanks John that’s very sweet. Yes I’ve found MS flaring up and stress is very interlinked. If something is bothering me and I lose sleep over it for a few days, it can bring on my old symptoms of vertigo until I get plenty of sleep and rest and get myself feeling more peaceful. You can’t always avoid stress but it makes you realise you should avoid it as much as you can (I.e. Avoid toxic relationships). Your own mental health has to come first above a job, relationships etc. I’ll be fine, we’re tough cookies us MS warriors!
I have been suffering with bladder and bowel problems since I was 18, I am 24 now and my best years have been taken away from me because of it, I self catheterise now which helps but I still have the occasional accident, so you are no alone