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Original poster

Bladder and bowel probs - doctor's appointment?

198 replies

ScarletFaced · 15/08/2021 11:48

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 Blush

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!

OP posts:
MojoJojo71 · 19/08/2021 13:54

Thinking of you OP. My mum has MS and I’ve had some symptoms recently that I’ve been putting off making a GP appt but I’m going to call in the morning. I totally understand where you’re coming from in terms of worrying your family. Telling my mum is the thing I’m most frightened of if I got diagnosed. I keep reminding myself though that there are great treatments around these days and having a diagnosis means you can start treatment early and hopefully fend off further relapses.

Take care of yourself Flowers

Reallybadidea · 19/08/2021 14:14

Sending you love and strength. My sister has had MS for around 10 years now (well probably longer than this, but diagnosed 10 years). The disease modifying treatments do make a difference. She has found online MS forums very helpful and gets lots of tips and support from there. She also has an MS nurse who is a point of contact for questions and advice between routine appointments and who can also get her back in to see her consultant if necessary. Has this been mentioned to you at all?

Dsis finds her most debilitating symptom is tiredness and fatigue and that part of this is having very low levels of vitamin B12. She now has injections every couple of months which makes a big difference to her energy levels, so might be worth asking about. Vitamin D and sunshine also helps.

Obviously you know your work situation better than us, but I so wonder whether you could consider getting signed off for a bit to enable you to rest, come to terms with your diagnosis and current symptoms without worrying about work? Remember that with your diagnosis comes legal protection.

I know it's easy to say and less easy to do, but try and take one day at a time. You will get through this FlowersCakeBrew

DollieBantrysPantry · 19/08/2021 14:20

Have been following your thread OP and was shocked to see your latest update, sending my best wishes to you 💐💐💐

Interested in this thread?

Then you might like threads about this subject:

General health
AntiSocialDistancer · 19/08/2021 14:58

I know two people with relapsing and remitting MS. I wish I knew them well enough to send you lots of positive words but I only know how theyre getting on via social media and it seems like they're managing it very well once it all settled. Flowers

It sounds very distressing but I'm pleased the diagnosis was so clear and comprehensive so at least you can come to terms with it rather than waiting and second guessing. And lots of medication to assist you too Wine

Cocolapew · 19/08/2021 15:01

Sending you best wishes, good luck with your treatment Flowers

Pericombobulations · 19/08/2021 15:04

Sorry tp hear it is MS, but at least you can now be treated and can get more knowledge going forward.

I would love to say you will be fine but with MS everyone is different. I still work and only have minor adjustments, but do need a blue badge as I cant walk long distances, and get fatigued very easily from shorter, but you may well be completely different.

You will get an MS Nurse contact and they are a godsend, I email mine with questions, particularly when I cant get a response from my Dr. They are also the ones who referred me to the bladder nurse and physio (for dodgy knees maybe from the MS but more likely to my being overweight).

Take care, its a lot to take in particularly to start with. Take things one step at a time.

Btw DMT's, I went for a lowest option as I am terrified of medicines, but they offered me all options. The MS nurse afterwards helped me decide which one suited me best, you wont have to decide now but do consider the options when you are offered them and pick the one that suits you best.

Notavegan · 19/08/2021 15:10

So sorry to hear this, do get signed off work for now won't you.

QueenStromba · 19/08/2021 15:28

I'm sorry to hear that. It's good though that you've got a diagnosis so quickly and can start on some treatment. You've had some amazing care so far so it seems that you've got an excellent hospital and hopefully they'll continue to be so on the ball.

YukoandHiro · 19/08/2021 16:10

Sorry to hear your diagnosis OP, but it's really great that you've got to the bottom of it so quickly. At least now you'll have the right support and medications. Are you going to take some time off work to digest what's happening?
Don't worry about telling your family - they will only want to support you.
Good luck with everything x

cricketball · 19/08/2021 16:13

Sorry to hear this, but hopefully you have got your diagnosis at a relatively early stage, and now you can get appropriate, focussed treatment.

Take some time off work in order to get used to any drug regime and to give yourself time to adapt. Be kind to yourself. 🤗

Rainallnight · 19/08/2021 16:18

I’m so sorry to hear your news, OP. A good friend of mine was diagnosed about five years ago and is doing brilliantly. They really do have such good treatments now and her NHS care is so brilliant.

I’ve just noticed this other thread where another MN-er has been diagnosed with MS today. I’m posting the link to it here in case it would be at all useful to be in touch with her. www.mumsnet.com/Talk/_chat/4324155-help-i-can-t-pee

Original poster
ScarletFaced · 19/08/2021 16:24

Thanks for being so supportive and positive! I actually don't feel overwhelmingly negative or distressed, the focus of the appointments today was really how much can be done and how much better the medical situation is now for people who have MS than it was 25 or even 20 years ago.

The nurse - who was lovely and extremely helpful - thought it quite funny that I had assumed that everyone had pins and needles and numb fingers, but agreed that some of the earliest symptoms can be so mild that it's easy to overlook and normalise them (which is apparently what I did).

The hospital generally have been fab. I honestly always assumed that MS would be a very lengthy and vague thing to diagnose, but apparently if certain things are obvious (like the lesions on the MRI) it is quite "straightforward".

The nurse suggested I take a few weeks off work to get used to meds regime, come to terms with the diagnosis and learn ways of managing the bladder and bowel symptoms. It seems pretty positive that there a lot of ways to improve the bladder issues even if the first line meds don't work too well. The bowel urgency and incontinence is more of an issue because the specific problem that I have is not so easy to treat - in other words, it's more about managing and hoping that it gets better when I am not in the relapse.

I've talked to a few people about it tonight, going to talk to my mum on the phone tonight - dreading it!!!

OP posts:
ElizabethTudor · 19/08/2021 17:13

I’m glad you’ve got a diagnosis, and that the hospital / nurses have been good.
Hopefully they will continue to be supportive over the coming months, and you get the treatment you need.
Good luck with the call to your Mum later.

LadyEloise1 · 19/08/2021 17:32

@ScarletFaced
Thinking of you and sending you a hug. Thanks
I am sorry that you have been diagnosed with MS and so wished that it was just some minor ailment causing your symptoms.

Chocciebiscuit · 19/08/2021 18:13

Flowers I am sorry to learn about your diagnosis. It is good that there are meds etc and support to help your symptoms, you sound like you have had really good NHS support so far. I am sure your family will be supportive, yes they will be shocked but they will want to help you feel better. Take care Flowers

Tempusfudgeit · 19/08/2021 18:44

Sending you love, OP. My sister was diagnosed with RRMS when she was 19. She's now 42. Give yourself some time initially - it's a big shock. An OT told her immediately after diagnosis that she'd 'be in a wheelchair in 5 years'. 23 years later she's still walking, albeit with a frame. The main thing I've learned watching her managing it over the years is that the mindset and keeping healthy are absolutely as important as the drug therapy in terms of quality of life. I'm here if you need a chat/vent xx

Applesandpears23 · 19/08/2021 20:22

I am glad you got a diagnosis and there are some treatments for your symptoms. I am sure it is a big shock. I hope you are able to share the news with some of your friends now. Take care.

RampantIvy · 19/08/2021 20:26

I'm so pleased you were seen and diagnosed so quickly.

Original poster
ScarletFaced · 19/08/2021 20:33

My friends and family have all been great - really supportive and not too much drama, shock, horror! And I am feeling not too bad about it so far. I was so ready to be told that it was all in my head, psychosomatic symptoms or whatever. In a way it's good to know it is something they can treat, and I had never realised that there are such effective MS drugs these days. The bladder and bowel probs are still getting me down a bit - but at least I know that they may spontaneously go away or improve. The nurse was very keen that I should make an appointment with OH at work to discuss things before I go back, which is probably a sensible idea.

OP posts:
pudseypie · 19/08/2021 20:37

I was just reading your thread and thought it sounded like my DH who has MS and now have seen your update today. As others have said, MS treatments have moved on massively. My DH was diagnosed at 21 and is now 46. Full mobility, some symptoms, but generally is very well. He has a weekly injection of beta interferon which has helped massively slow the progression of the symptoms. He was told when he was diagnosed he had 5 years before a wheelchair, and that was 25 years ago now and he still runs after our kids. He is keen on helping himself through diet as well, oily fish, gingko and ginseng, selenium. The MS nurse should be a great source of support for you too.

Mischance · 19/08/2021 21:54

It sounds as though your neurologist has been very thorough and very clear - although it is hard to take things in at first, I know, and I can understand you feeling numb.

You need time to let it all sink in, and to find the right support for you - online or via friends or MS nurse. The help is out there. I am sending good wishes for the future.

HeartvsBrain · 19/08/2021 22:46

Thank you for your update OP, I am so sorry that it is MS, but as you have been told, it's treatment has improved so much in the last 20 years, and will almost certainly continue to improve.
I am sure that your bowel and bladder problems will be addressed if they don't clear up spontaneously, so do keep your GP and your MS nurse updated on how that is going. Please know we are here for you, which includes pming me if you just need/want someone to talk to - I don't have any personal knowledge of MS, but I do about other disabilities (I have Parkinson's and I am in a wheelchair due to severe arthritis in my lower back, and I need to pee every two to three hours, 24 hours a day, but I don't have to manage a job on top of that!). Anyway, I am often awake during the night.... I am sending you a big gentle hug and lots of 💐 x

Original poster
ScarletFaced · 19/08/2021 23:13

It's really helpful to read other peoples' experiences and thoughts. Definitely positive to know that various people didn't end up in wheelchairs after 5 years as predicted (although no one actually said that to me today, thankfully!) and that many are doing well such a long time later.

I thought the neurologist was great - he explained everything so clearly and in layman's terms, but without being at all patronising. And I felt it was thoughtful the way he took time to explain, for instance, that the reason I'm having bowel symptoms (which doesn't so often apparently happen in "early" MS) is because of where the lesions are situated.

OP posts:
coastergirl · 19/08/2021 23:34

I've been following your thread. I'm so sorry about your diagnosis, but I just wanted to add to what others have said. I had a boyfriend when I was a bit younger whose mum had MS. When I first met him his mum had been told she would be in a wheelchair within 6 months, and a while later was told she was losing her vision. I was with him for 4 years and neither of those things happened, she was pretty stable. I have friends who are still close to him, and still not much has changed. Treatments can be really effective. You seem to have such a positive attitude. I really hope things go well for you.

LOLeater · 20/08/2021 00:46

Sending hugs OP and hoping that you’ll have time in the days and weeks to come to take on board all of the information: I’m sure there will be lots.

When I’ve had bad news it has taken a while to sink in. Take the time you need and do let us know how you’re doing. I’m sending positive thoughts your way….