Hi all I had optic neuritis last October. I have had numerous blood tests and ultimately had to have a brain MRI. The MRI showed several suspicious lesions. There is nothing else to do at the moment really as didn’t have many symptoms so the neuro discharged me in December and said I should return to GP for referral if there were any drastic changes. I have been experiencing some urinary frequency and urgency for the past month or two. I am now peeing every half an hour to an hour. And I have to get up in the night. Sometimes during the day, I go to go to the loo and realise there is also a patch of urine already in my underwear. By the afternoon there is a noticeable smell of urine. I am only 28 and I am terrified. I am going to have to by some Tena lady and it makes me feel horrible. I can’t bring myself to tell my husband. I am so embarrassed. I am absolutely mortified. I’m going to see my GP this week, I just wondered if anyone else had experienced anything similar. I feel alone and frightened. Thank you for reading and for any replies anyone is willing to offer
Hi there, I haven’t but I know my brother who is diagnosed with RRMS has periods where he has frequent toilet visits. Not saying it is related to MS as it could be other things too but definitely worth seeing the GP Let us know how you go on Mick
Hello anon
Try not to panic, which I know is not easy. You may need to have a MRI of your spine, to see if there are any lesions. Lesions in certain areas of the spine can cause incontinence.
It could be something more simple though, which can be easily sorted.
I’m sorry this is happening to you…your only young. I hope its down to a bladder infection and you just need antibiotics.
Do try and talk to your husband about it, you really need his support.
Take care
Let me know how you get on x
I have bladder urgency issues. I simply can’t feel when I need to go before I’m near weeing my pants. It’s taken a lot of getting used to, but I live with it now. I’m only 23 and my issues started when I was 17.
I haven’t been diagnosed with MS, but just wanted you to know that you’re not alone and hopefully it’s just an infection and nothing untowards.
Best of luck and wishes
Tsuki xxx
I have the same problem and use tena pads which make me feel horrible but im starting to come to terms with it now. I have only recently told my GP and my Mum as I was too upset by it but it wasnt as bad as I thought it would be. Try to talk to your husband about it, im sure he will understand and chances are he already knows there is something wrong and it will be a relief to him when you do tell him what is bothering you. Good luck!
Sharon x
I get this too although i can go and then 5 mins later need to go again getting used to it, not diagnosed yet with ms waiting for neuro appointment.
Good Luck
Hi anon, I have had urinary problems for many years and it is awful to have the loss of control and embarrassing lovely so please know you are not alone in having this. I wear the small mini tena ladies and they are more than adequate for the urinary leakage I experience and really no different to panty pads that women without this prob wear every day. You are so young lovely I can well imagine how you must feel about this, it was difficult enough for me to accept and I was in my early 40’s. like so many others I can spend lots of time in a day making friends with the loo and yet other days It doesn’t pose a problem. I am prone to peeing myself if I laugh so Im always popping to loo if im in a situation where I may be laughing more than usual. Urgency comes and goes depending on reflection on my health on the day. On a personal note I agree totally with Sharon have that talk with your husband, I have had two intimate relationships in the past and explained to both partners, Its not that we should have too but for me it was important that they understood about some of the things that I have to do in order to remain comfortable in my femininity, and wearing a pad is one. They understood and it was never an issue. Take heart and remember that you are still the beautiful woman you have always been. And that there is always someone on this forum who understands and can help you at this time. Joy x
I can’t thank you all enough for your replies. You are all very kind and have certainly made me feel a bit better about things and certainly less alone. I am going to go and see my GP this week and see what she says. I would like to see her before I mention anything to my husband. I can’t really explain it, but I just would feel better if he didn’t know anything about the appointment before I go. I just don’t want the pressure of having to talk about the appointment as soon as I have been. I will talk to him this week, I know he wouldn’t want to think of me being upset or feeling ashamed or embarrassed all by myself. I will update once I have been to GP. Thank you all again for sharing your advice and experiences x
Hi anon, you are never alone as long as you have this forum lovely, I feel you are trying to protect your husband from your distress and I admire that and im sure in going to see your gp before you discuss it with him will prepare you better in what you want to say to him. Please let us know how things work out and I will keep you in my thoughts. Joy xx
Hi all
Just wanted to update. I went to the GP this morning and she was very kind. She has taken a urine sample which she tested with a dipstick and there was nothing untoward. She has sent it off for analysis anyway and I should get results on Monday.
She is also referring me back to neuro as we both agreed a urine infection was unlikely to have lasted so long/cause incontinence etc etc.
Told my husband this morning. He was a little hurt that I kept it from him, but once I explained my reasons etc, he understood and was very understanding and kind.
So now I just have to wait for the neuro appointment to come through. I feel better about everything and at least now it’s out in the open.
Thank you all again for your advice and kind words x
Hello anon Good to hear you have a understanding gp. Really glad you’ve shared things with your husband but that’s helped ypu feel lots better 
Take care and good luck with Neuro appointment. Xx
Hi , I’m glad your feeling better about this now. I have seen many people in a work capacity with continence issues, some who has MS, Some not, of all ages. Many people often say they don’t want to go out or tell others, it’s worth speaking to continence nurse specialists or district nurses who might be able to help with certain products or advice, services may vary depending where you live. I had Uro-dynamic tests 10yrs ago due to frequency; outcome was over stimulated bladder. I still go a lot more that is usual and broken sleep at night, can’t empty without a stimulation such as rubbing skin on leg lightly or humming - may sound crazy, was a tip from cont. nurse and works for me! Thank you
Hi Anon, Really embarrassing awful undignified situation. However not one that can’t be treated and managed. I had all of this before being diagnosed with MS. I had to keep a frequency chart I.e how often I weed and how much - yes I used to measure it in a jug. Tried a variety of tablets - the newest one that has come out is called something like Betmiga. Went to see a lovely continence nurse - you can phone your local hospital ask to be put through to the continence clinic and ask for an appointment I.e self refer. I,had a painless bladder scan done. Where I drank before maybe 1/2 before then go to the loo then they pass a scanner over your tummy which measures how much wee you have left in your bladder so didn’t manage to wee out. If the volume is over 100mls left in your bladder there’s a problem. I also take a tablet called desmopressin. This is my best tablet as it stops me getting up at night to wee. I used to,get up about 4 times. Really hop you get sorted and so pleased your husband is being supportive Good luck and hugs Min xx
My MS started last year, I didn’t tell anyone for months including my husband. I thought it was middle age women’s bladder, trapped nerves or just in my mind. My husband was really angry with me for not telling him but I just wanted to protect him and find out more facts before worrying him. Now we’re coping together and he’s being my rock.
How wonderful to hear of the positive reactions from your partners. I have always been to scared to share with mine, in case he see’s it as a weakness.
I just wanted to say that I did have a problem with night time weeing, retention (weeing and needing to go 5 minutes later) and hesitation (needing a wee but having problems getting started).
My MS nurse suggested cutting out all caffeine. I didn’t really think it would work but it did. I used to need a wee at least once an hour and get up twice in the night for a wee. Now I can go all morning at work and get right through the night. I still wear a panty liner for security really just in case I have a coughing fit or laugh a lot but it is soooo much better than it was.
I have decaf teabags, decaf coffee and I never did like cola so didn’t have to worry about that.
Tracey x
,i have this problem was dia over a year ago first and foremost you need to make sure its not an infection , myself i have lesions on brain and spine i self cath twice a day and take med it can be controlled so try not to panic , make sure you keep fluids up AVOID caffeine at all costs this seriously intensifies the problem nothing acidic either this causes the bladder to contract to much giving you that need to pee also look up pelvic excercises this helped me imensly but as i said make sure its not a uti as this would give these sym .