Going to the loo all the time

[EllieCharlie52]

So I have ME/CFS, chronic migraine and have just added Fibromyalgia to the collection though I think it’s been there for a long time. One of the symptoms probably belonging to the former or the latter is needing to go to the loo often and in the last couple of years this has definitely worsened. Early last year I was waking up 2+3 times a night for the loo and they tried me on solifenacin which did help but stopped being effective a few months ago and did an ultrasound which was fine. I was and still am waking six times a night which is flipping ridiculous so they tried tolterodine which did nothing over 3-4 weeks except give me dry mouth. I’ve now been on Mirabegron for just over 5 weeks and still nothing. This is playing havoc with my sleep which was already not great. Has anyone had any joy with this? If so how long did it take? They gave me a two month supply and then will revisit it but I’m tearing my hair out here. Or I would if I had the energy. I get an hour to an hour and a half max before needing to get up for the loo again. I’m wondering if more needs to be done to look at the root of this somehow or if further diagnosis is needed too? I've wondered about it being interstitial cystitis possibly which seems to fit but no medics have ever mentioned that. Would be grateful for any thoughts or similar shared experiences, thank you.

When this happens to me (2 or 3 a year), it is a UTI and sometimes OTC meds help and other times I need an antibiotic. It's been like this for about 4 years for me (I am early 50s and peri). I put it down to age and just sigh when it starts again. Good luck. I hope you get it sorted but I know how bloody frustrating it is.

Ugh that sounds annoying. I wish it was a UTI as at least they're generally easy to solve. I'm 40 so I don't think it's anything menopausal, more likely to be a part of chronic illness stuff which has just got worse...

At 40 it could be menopause related. I was well into peri-menopause by 41, and being up in the night to wee multiple times was one of the symptoms. Also the first one to be alleviated by HRT.

I was tested for diabetes insipidus as I pee more than I take in but it was negative. Have you kept a diary of intake vs output?

I cut out all caffeine, didn't drink fizz anyway or artificial sweeteners but those need to go too. I do religious pelvic floor exercises and take daily d mannose. Whether these help with the weeing, I don't know as I originally took d mannose to prevent utis but I do t get up in the night so much since taking it.

None of the prescription drugs helped

As an aside have you been tested for everything before being given a diagnosis of fibro and me? There are lots of other diseases and conditions that have similar symptoms and some can also cause urinary issues.

Mines related to an autoimmune condition that they originally wanted to diagnose as fibro but more tests showed what it actually is.

I hope not for various reasons. The going to the loo often has been a thing for a long time just has worsened in the last year and a bit. I hadn't realised until fairly recently that it was a common symptom of both ME and Fibromyalgia, I'd always thought of it separately to those for some reason.

I had this and it was a problem with the urethra being too narrow. I had a small operation where they cut it and it is much better. Do you go much? Is the feeling of needing to go in the bladder or lower down - if you know what I mean.

Hi,

Sorry for taking ages to get back to you. It feels like all the flipping time - roughly every hour and a half day and night. I get abdominal discomfort on my right side and the usual kind of pressure lower down.

I haven't kept a diary no but that sounds like a good idea, just not sure, forgive me if I'm being dim here, how you would measure it. I'm negative for diabetes.

I've cut down on caffeine to one cup of tea in the morning and rooibos the rest of the time. I don't generally drink fizzy drinks though do on occasion as weirdly coke helps my migraines sometimes.

I've had so many blood tests over the years and nothing much ever shows up apart from vitamin D being low but it is for a lot of people, I've been taking a supplement for a while now though. If you don't mind me asking how did you get your diagnosis?

I've wondered about it being interstitial cystitis possibly which seems to fit but no medics have ever mentioned that.

I know someone who has that and they have had quite a few medics who didn't know anything about it. I would suggest it as a possibility next time you're seeing your doctor. I'm sorry you're going through this, it's not nice

I wouldn't dismiss the possibility of a UTI they are absolutely NOT easy to solve in a lot of cases. Google embedded UTI

Thank you, that's good to know, I will definitely mention it. It's pretty frustrating. I'm just beginning to wonder whether it's worth making another GP appointment to discuss meds and next options as I've been on the Mirabegron for six and a half weeks I think and no change. It says it can take up to eight weeks but honestly I'm struggling to see how it might magically kick in when there's been no difference so far.

I will do that, thanks, I've not heard of embedded/long term UTIs.

Just to say GP decided and I agreed that I need to see a specialist. I’ve now got a phone appointment with a nurse in August. To be honest I don’t think this is great as I was expecting to see a doctorbut the appointment letter gave me very little info about the appointment pretty much nothing other than when it was. Has anyone else seen a nurse in similar circumstances and if so what was it like please? I say seen, my appointment is a telephone one.

So far, admittedly it’s only been just over a week, new drug doing nothing except possibly giving me dry mouth. I basically feel like I’ve got the beginnings of a sore throat all the time which doesn’t develop further but it’s enough to make me croaky and need to drink at least a little most times I wake up in the night which is kinda fine but also potentially self defeating somewhat. I can increase it myself by 5mg per week for up to 4 weeks but will the side effects increase proportionally?
I need to nap most days and I can rarely fall asleep quickly so it often takes 20-30 minutes of reading by which time I either need the loo again or I only get to sleep for not that long, less than an hour which isn’t really long enough, before my bladder wakes me up. I hate this and try not to get frustrated by it but that’s hard too. Argh!

So on a slightly separate but very related note - my brother's wedding is coming up and I've been invited to stay the night before and after. The accommodation is lodges on a country estate but the lodges themselves do not have toilets, there is only a separate toilet and shower block. Personally I think this is ridiculous, I wouldn't expect an ensuite or anything but a shared toilet. Anyway I've confirmed this with the venue but I'd like to write back about this being a serious lack of accessibility. It's going to be a nightmare going to a separate block up to six times in one night though someone's suggested a shewee type arrangement. I don't want to talk to my brother about it because it would be weird and he's got enough on his plate. Any ideas or tips for writing back to them?