Bladder and bowel probs - doctor's appointment?

[ScarletFaced]

Name changed for this because I am too embarrassed!

For about the last 2 weeks I've been having big issues with bladder and bowel control. I haven't experienced this previously and at first I thought maybe I had a stomach upset, but I don't actually feel that it is.

I don't get any warning when I need to "go", have to dash to the toilet and sometimes haven't been able to make it in time.

Very occasionally I don't feel properly till it happens - like this morning, I didn't feel the urge until it was already happening

I was kind of putting up with it till I realised I've been getting up in the night 5+ times to go, constantly having to run to the loo at work, etc. And it is getting me down.

Is it silly to book a doctor's appointment for this? The next one I can get is in 4 weeks anyway, so it will probably have stopped by then!

Is there something I can do? I'm so embarrassed and I feel like I can't tell anyone!

I have had a week in hospital, a few in patients appointments and a trip to A&E then the children ward during the pandemic. They are very good at distancing and cleaning so its probably safer than most other public places right now

Dont worry if it is MS, I'm 5 years on from diagnosis this month, the cellist Jacqueline du Pré is by no means indicative of how you will progress. Whilst I have some similar symptoms, the neurologist was clear that whilst MS is one possibility, there are many other possible reasons. So it may not be MS but they are taking things seriously and you will get help.

I've just been referred to a bladder nurse due to my MS, but my issues are slightly different but they have a range of things they can offer and help with.

Good luck with your appointments, and hope the news is positive for you.

@Pericombobulations

Dont worry if it is MS, I'm 5 years on from diagnosis this month, the cellist Jacqueline du Pré is by no means indicative of how you will progress. Whilst I have some similar symptoms, the neurologist was clear that whilst MS is one possibility, there are many other possible reasons. So it may not be MS but they are taking things seriously and you will get help.

I've just been referred to a bladder nurse due to my MS, but my issues are slightly different but they have a range of things they can offer and help with.

Good luck with your appointments, and hope the news is positive for you.

That's actually really reassuring - thank you! Although they haven't yet said what it is or isn't - I expect it may yet be nothing!

I've been told that my bladder and bowel are issues are due to "faulty nerve signals" - my bladder is getting signals to contract when is doesn't need to which is causing spasms, which then cause the sudden accidents. The bowel thing is due to a similar thing (like, basically everything going through too fast) but I do have decreased sensation and muscle tone too. I had a not particularly pleasant examination which felt like it went on for an hour (it was probably actually 10 mins).

Anyway, they've loaded me up with meds and I'm also having some fluids because I was a little dehydrated.

Sadly thats an MS issue. Basically our spinal cord is being chewed like an electric cable and messages are not correctly received at the destination. This can cause many different symptoms, and they may spontaniously get better and may not. This link explains it in more detail (dont worry about the different routes for diagnosis, I just had an MRI and the Evoked Potentials but not a lumbar puncture):

www.brainandspine.org.uk/our-publications/our-fact-sheets/multiple-sclerosis/

If you want to read more if it is MS, then both MS Trust and MS Society webpages are very good and trustworthy.

@Pericombobulations

Sadly thats an MS issue. Basically our spinal cord is being chewed like an electric cable and messages are not correctly received at the destination. This can cause many different symptoms, and they may spontaniously get better and may not. This link explains it in more detail (dont worry about the different routes for diagnosis, I just had an MRI and the Evoked Potentials but not a lumbar puncture):

www.brainandspine.org.uk/our-publications/our-fact-sheets/multiple-sclerosis/

If you want to read more if it is MS, then both MS Trust and MS Society webpages are very good and trustworthy.

Thanks for this! They haven't said what it is or isn't yet but I hope I will get a clearer picture of what they're looking at when I have the appointment tomorrow.

The thing which makes me doubt MS is that I don't have any other symptoms. But then the neurologist and the doctor I spoke to today seemed to think other things they asked me about were relevant - like the random cramps and jerks my legs do at night and the fact that I'm always getting pins and needles and numb fingers and feet. But I don't know if those kind of things can signify anything - it just seems so mundane and normal!

My initial referral was solely due to pins and needles in my hand, which had been preceded by strange sensations in my opposite leg, which had been diagnosed as sciatica at the the time. My leg since stopped those sensations but my hand has continued. The drs since prescribed something to control that. So something as innocent as that can trigger investigation which can be nothing or could be MS.

Trust me, they wouldn't be putting you through those tests if they didn't think it important to rule MS out if possible. Whilst it isn't the most likely cause it is worth their checking just in case.

It sounds as if hospital staff are taking this seriously and are being helpful, OP. Best of luck with tomorrow’s appointment and I hope that you get some sleep tonight.

@ScarletFaced I've just read this thread and have nothing to add except to wish you the very best during this very difficult time for you.

Thank you for all the support. I wish it were tomorrow already - feel like my mind is tying itself in knots and I just want to know what's happening. My bladder is still going crazy and keeps sort of twitching and spasming constantly - not painful and not even leaking all the time, but it isn't really the best when you're trying to get to sleep! I'm definitely having a moment of stupid self-pity.

I hope you managed to get some sleep. What time is your appointment?

Thanks! It's "arrive for 10"!

I've been following your thread and wanted to wish you the best of luck for today. I am glad the doctors took you seriously and it seems like they've been very thorough so I really hope your symptoms ease soon.

Oh Scarlet you're neither stupid or self pitying . You seem to be facing this horrible situation with a total absence of self pity and a great deal of courage .
Today will be another step towards finding out what's going on and how it can be treated and managed.
I hope that soon you'll be able to talk to a friend or relative .I hope that you're not fearing that they will think you silly (!) ,I'm 100% certain that if the position were reversed ,you would be nothing but supportive .And surely there's no reason to expect less from them .

I hope you get some answers today. I think not knowing can be the worst thing and once you have a diagnosis then you can hopefully get some treatment in place, rather than being stuck in limbo. It sounds as though you're getting really excellent care from the hospital so far, so likely that will continue going forward with treatments and support. I wonder whether it's worth identifying one or two people irl who you can share with initially? Lots of good wishes for today xx

Another one wishing you luck for today Op.

Sending you luck for today. Sorry you have not been well, totally sympathise with you, I have experience of overactive bladder & have some bowel issues (more laziness so have meds for that) but it was the overactive bladder the main problem. I thought I had sciatica but had a benign tumour causing spinal cord compression,hence overactive bladder (night time/day time) back pain, mobility problems etc.

I am glad you are being looked after and hopefully you will get some more help soon.
The Continence nurse I had was very helpful, initially after I had my op I was supplied with some pads/disposable pants. I did have to push a bit, they do not provide enough but if you are eligible they should help, but they will do an assessment, mine was fill in a bladder/bowel/food/drink diary then a phone call due to it being covid times. I do remember having to weigh the pads at some point, ridiculous really but sometimes you do have to jump through the necessary hoops. The continence nurse could not have been nicer on the phone they will help. They also gave me the details for supplier so I could purchase more supplies. Brand was ID expert, they are also sold on amazon, I had to use ID expert slips at night for bladder (pads were no use at night as I would wake but no time to get to bathroom) contiplan wipes are good + plus some dry wipes, extra large disposable nappy sacks for disposal (on amazon), disposable bed protectors. During day as I was emptying bladder I used pads ID expert form extra plus pads (not for full bladder leakage in my case). Thankfully things have improved since op & meds. But it is hard when you don’t know what to use to help etc.plus you are tired !!! There was a point after my op when I was still on a catheter that they did say I might need to self catheter to manage my bladder so there are other option to reduce accidents, not emptying properly etc.
Re bowel before I came home I did have to use a glycerine suppository each morning which ok not really what you want but needs must, then once I came home have managed just with laxatives & this is fine. I hope you get some help soon and sorry for my long ramble hope it helps in some small way and you are definitely not alone in your struggles x

@Reallybadidea

I hope you get some answers today. I think not knowing can be the worst thing and once you have a diagnosis then you can hopefully get some treatment in place, rather than being stuck in limbo. It sounds as though you're getting really excellent care from the hospital so far, so likely that will continue going forward with treatments and support. I wonder whether it's worth identifying one or two people irl who you can share with initially? Lots of good wishes for today xx

Yeah, knowing is definitely better than not knowing.

God luck. I hope you get more answers today. I know you must be apprehensive of them all the same.

Better to know what your dealing with

Just wanted to update as everyone here has been so kind and supportive.

I had the appointment with the neurologist and now I'm waiting as I will see a nurse and also set up some future appointments. The neurologist said it was a very straightforward diagnosis of MS: the MRI showed lesions which indicate MS and show that I have already had a number of "relapses". (It seems strange to say relapse about something you've only just been diagnosed with, but I understand that is the language!) There was also some kind of antibody in my spinal fluid from the lumbar puncture which essentially confirms it.

The consultant emphasised that there are very good treatments now. They will start me on steroids to address the current relapse and also medications to treat the symptoms, but as everything indicates I have the relapsing type, we can look at disease modifying therapy options which have better outcomes the sooner they are started. (I didn't really fully understand the difference but he seemed to say that they can reduce the relapses and help you recover from them more fully and quicker.)

The reason my bladder and bowel are so much affected is because some of the lesions are in the lower part of the spinal cord. It is also more likely that I would have mobility issues but despite having some stiffness and spasms (I think he called it spasticity) it isn't affecting my walking (although I will also have a fuller assessment at some point). Hopefully the bladder and bowel symptoms might naturally go away as things improve but there are a lot of options for treating the bladder issues. The specific bowel issues I am having are harder to treat "conservatively" so some extent it's going to be managing and hoping for improvement.

Anyway just writing because I'm sitting around and waiting a lot and it keeps me occupied. I don't know how I feel about it, I feel a bit numb to be honest! My immediate worries are about family (worrying my family and not being able to do things for them) and if it is going to cause difficulties at work.

Very hastily but sending you all my love and strength .You will get through this ,one day at a time [flower] [flower]

I wish I could reach through the screen and hug you. I'm sorry it was something they give a pill for for it to totally disappear.

But as you say, lots of positive news too. You can manage it. You can treat it and if it happens again you can be ready.

I think now is a good time to talk to people IRL but only when you feel ready. They might have lots of questions you cant answer, but that's ok. You could write the helpful questions down for future appointments.

Lots of strength for the rest of the day

Good luck with your treatments OP

Just wanted to send hugs and support. Getting a big diagnosis is a trauma - be very gentle on yourself. It's not nice having to tell family things that you know will hurt them but it's better once it is done - it's not something they would want you to protect them from. It's good you have had lots of positives too. You've coped with this admirably, so give yourself credit for that x

I have beenfollowing your thread and just wanted to wish you all the best and that the treatment helps resolve the main issues

Sending my best wishes OP💐