I’ve endured an over active bladder for a long time. I saw a continence nurse, I’ve tried three different meds, and as my bladder doesn’t empty fully I’ve been self catheterising since last summer. Despite all of this I still suffer from urge incontinence, which is as bad as it ever was. My GP has tweaked the meds and I’ve to try that and go back in two weeks. To be honest I’m not optimistic that it’s going to improve, so apparently the next step is a referral to a urologist for Botox. To be honest I’d rather that happened sooner rather than later, this is really getting me down and makes going anywhere really difficult, not to mention the embarrassment factor.
I’ve consulted Dr Google on Botox for over active bladder, so I understand the procedure and theory, but I don’t know anyone who’s had it, so I’d be interested in the experiences, good and bad, of anyone here.
I can’t take much more of soggy pads and damp knickers, not to mention the expense, and the amount of pads I have to carry when we go anywhere. The suitcase is almost empty when we come home having used up numerous packs of tena.
Absolutely brilliant!!
I’ve had it done twice now. The first time was done under a general anaesthetic so they could have a check for any other problems while they were there. The first day things were worse than they had been but great after that. I do self catheterise all the time but I don’t find it a problem.
Six months later I had it redone but under a local and I was a bit scared! However, it was fine, a little uncomfortable but not unbearable by any means. As its effectiveness hadn’t totally worn off it was decided to leave it 9 months this time. We’re at the nine month stage now and I’m definitely ready for it to be done again. I’m going to ring the hospital next week to see when I can expect the appointment.
IAt its best I’ve been able to last 10 hours overnight without needing to get up to go to the loo which is great. During the day it has made outings so much easier. Quality of life is so much better and cheaper too!
Sarah
Hi Flower!
Sarah tale is one of positivity and great results, despite a few niggling teething ones.
I did discuss it with my uro, for if my spc didnt work well.
I`m unable to self catheter, but cope well the majority of the time.
Go for it girl!
pollx
Hi, I self catherterise but have just had Botox injections in my inner thighs and calf muscles. For the first few days I didn’t feel well and was stiffer than ever but now just over a week in, I have to say I don’t have leg spasms at night and very few in the day but my walking is no better so will have to wait and see.
Good luck
Polly x
Hi Flowerpot
I’m waiting for bladder Botox. I don’t have the same leakage problems as you but I have bladder spasms that are making life a misery, I just want to go all the time. And it gets worse every time we’re out in the car. In spite of the spasms, I can’t empty my bladder at all, without catheters I can’t wee whatsoever now.
I’ve seen a urologist, who says he uses British Botox, which should last for 2 years rather than the 6 months of American Botox. He still has to apply for funding to the CCG (like everything it’s a poxy postcode lottery!). There are a few things you have to have tried before the funding is agreed, like drugs and you also have to have a test on your bladder to see the capacity or something. Which I’ve had.
So all I’m waiting for now is hopefully, an appointment for the treatment. Btw I’ve tried oxybutynin years ago and don’t want the dry mouth, tried Vesicare, which gave me swollen feet like you wouldn’t believe, and recently Betmiga, which caused my liver enzymes to react rather badly.
I am really looking forward to having the Botox. Am hoping so much that it is effective for my problems. I asked one of the nurses if there’s any downside, ie if it doesn’t work, can it make matters worse? She said if it doesn’t work then you are no worse off than at present. So it all seems positive.
Sue
Thanks everyone. It’s very reassuring. I’m on oxybutynin, I’ve had vesicare and Tolterdine to no avail. I’ll definitely ask for referral to urologist and hope our good old NHS doesn’t keep me waiting too long.
Let me know how it goes Sue.
Eve xx
Hi
i have urgencey to go to the toilet it’s not to bad and no leakage as of yet (fingers crossed) and I can go althoughI am not confinced I am emptying completely. However it not effecting me to much should I mentions this to my Doctor at this stage? or should I waiting and see? (only diagnosed a week ago all new to me). advice appreciated. Thanks
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Hi
Well, I was due for my bladder botox yesterday. Got to the hospital, everything was fine, except that the surgeon didn’t turn up! Eventually it seems there was some kind of administration snafu with his diary. So the procedure was postponed. Today I’ve found out it will hopefully only be two weeks before it’s rescheduled. I’ll keep you posted.
Tenacious (good choice of user name btw), if you feel like your bladder isn’t emptying, try to get a referral to a continence nurse or a bladder and bowel nurse. They can do a scan of your bladder before and after you’ve emptied as much as you can. There’s a portable ultra sound scanner that means they can do it in your home. (My MS nurse can do it so ask yours if you have one yet.)
If you’re not emptying properly, there are things you can do to improve the emptying, first there’s the position to adopt when sitting on the loo. Ideally you should try raising your feet a bit (maybe on a small stool or a box, even a thick hard backed book?) so your bladder gets a bit compressed. Or you can try a rocking motion, or pressing your lower abdomen with your hand. There’s also devices you can get that sort of vibrate over your bladder. I bought one but it didn’t do much for me (think of it as like a vibrator that you push against the outside of your lower abdomen, the idea being that the vibrations stimulate the emptying!)
Making sure you drink plenty of water is also essential. What you need to aim for is any wee that’s left in your bladder is as weak as possible to avoid UTIs.
Ultimately, if you are being left with a large residue in the bladder, there’s intermittent self catheterising (ISC). But in the early days try all the other options first.
Your other problem being urgency, is very common. It’s especially so when you’re not emptying properly. If you can’t get the emptying sorted, and are plagued by urgency, there are drugs you can take to help. Your neurologist can prescribe things like Betmiga, Vesicare or Oxybutynin.
Have a look at the MS Trust information Bladder problems | MS Trust or of course the info on this site. Or ask on this forum. Those of us who’ve gone through almost every possible bladder problem will do what we can.
Sue
I’m not very happy. I thought my GP was referring me to Urology. Instead today I’ve had a message to say he’s referred me back to the continence clinic and I’ve got a appointment on 4th July. The continence nurse discharged me last July. My bladder doesn’t empty fully and I’ve been self catheterising since last July. My GP has tried different meds. I’m currently on oxybutynin, the max dose, it gives me a very dry mouth, which I could cope with if it actually cured the problem. Frequency issues are a bit better, but I still have urge incontinence, pretty much every time I go. I’m dealing with soggy pads several times a day, and two or three times during the night. It’s manageable at home, but makes going anywhere problematic. I feel the doctor is simply fobbing me off, by getting someone else to tell me it’s just something I’ve got to put up with. I’m 60 years old next month. No doubt he sees me as one of the ageing population who are deemed to be such a terrible drain on NHS resources.
Hi
Could you ask your neurologist for either a referral to urology or if that’s not possible, ask your neuro to write asking your GP to refer you to urology. Or get the continence clinic to refer you back to your GP with a request to refer you to urology.
You’re absolutely right, it’s not on that you are suffering like this. And there’s no good reason for it. It sounds to me like botox is exactly the right treatment for you and it should be a simple matter.
However, thinking about it, my urologist had to ‘make the case’ for funding of the botox to the local CCG. It apparently costs £950. That’s for this new kind of botox which can last for up to 2 years. And when he told me this I thought there was no way the CCG should refuse the funding since it’s probably cheaper than the alternatives (drugs, catheters, continence pads etc). Is it possible that in your local area, funding for botox is normally refused unless it’s an ‘exceptional’ case? This is the case in my area for FES, which is why I had to self fund it. Might be worth asking the continence clinic?
But in the short term, perhaps you should gather some information about bladder botox to give to your GP. Maybe they don’t understand the value of it? I’m sure you could get some help and / or advice from the continence clinic.
It’s crazy in this day to have to go through all these hoops to get something that would be more than likely exactly the treatment you need and which would change your life.
Sue
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Thanks for this. I’ll keep the appointment on 4th July with the continence nurse. I’m due to see the neurologist in August. I doubt that I could get a referral from him any earlier than that if I tried. I buy my own pads, so there’s no money saving incentive there for the NHS. I’ve had to accept there’s no cure or treatment for the MS, but hoped they’d at least offer me this.
Your GP doesn’t seem to be doing a very good job so pursuing lines of action with the continence nurse or neurologist as your doing seems a good idea. My continence nurse offered me pads on the NHS while I got sorted out with meds - luckily for me Betmiga did the trick. … from ProfG on the Barts blog MSers really shouldn’t be on oxybutnin
http://multiple-sclerosis-research.blogspot.com/2016/06/clinicspeak-oxybutynin-and-brick-walls.html
more reason to push for botox.
Good luck.
I agree with Vithfari, if you’re using continence pads every day, you should be able to get them on the NHS. Your continence nurse should be able to sort this out for you. Otherwise, keep pushing for more help. Betmiga didn’t work for me (plus it gave my liver a bit of a problem - raised LFTs - but my liver has a habit of doing this when given drugs it doesn’t like much), but it is a miracle worker for many people. Otherwise, there are other drugs that cause less dry mouth and/or work better than Oxybutynin.
I’ve just got my new appointment for my botox. 30th June, so at least they’ve accepted responsibility for the screw up of this weeks appointment and rescheduled pretty fast. Will keep you informed as to what it’s like and how it works.
Sue
I know exactly how you feel. I’ve been suffering with the same problems as you.
I’m having a Supra Pubic Catheter fitted on Monday and I’m looking forward to not having to worry about embarrassing myself in public and missing special days because of the fear of wetting myself.
I hope you get your appointment fast.
Tke care
Shazzie xx
I’m back again with the continuing saga of my bladder. I’m still not very happy with my GP. I spoke to the continence nurse by phone and explained the sorry saga. She knows me well, and she can do no more for me, I already knew that though. So she’s written to my doctor suggesting referral to urology, urodynamics test, the possibility of betmiga, the other three meds having failed and possibly Botox. I have a copy of the letter. So what happens next, a receptionist from the surgery rang on Wednesday to tell me I need to make an appointment to see my GP, the earliest I can see him is next Friday. So, what’s going to happen I wonder.
I can’t tell him any more, or any different that I’ve been telling him for months.
Is he going to refer me or not.
Being one of life’s glass half empty women (expect the worst, then anything any better is a bonus and that way I’m never disappointed!) I suspect he’s going to tell me this is something I just have to put up with and that the NHS can’t afford, or don’t consider it cost effective to offer anything else.
I say this because I’ve already had a run in with the pharmacist attached to the surgery because I self catheterise six times a day. He says this is too many and I shouldn’t be using more than four catheters a day because it’s costing too much money. I resisted the temptation to ask how often he empties his bladder. The surgery doesn’t dispense drugs. He is employed to check the doctors are prescribing properly apparently. I believe his remit is to look for savings. He needs to find a lot of savings because he’ll need to more than cover the cost of paying him.
Rant over …for now. I’ll be back!
Hiya
It does sound like you are being given the run around.
I had my bladder botox yesterday. It’s not the most pleasant procedure, but it doesn’t really hurt, just left me feeling a bit sore afterwards. It apparently takes up to 2 weeks to take full effect so I’m not expecting miracles in the next few days. They showed what was happening ‘down below’ on a tv screen as they use a camera to guide the needle. I think if/when I have it again I’ll probably go for the blissful ignorance option rather than watching the proceedings live and magnified many times. The needle looks like a javelin and each time it comes out there’s a small cloud of blood. Plus, the inside of ones bladder is not the prettiest of things (and I though botox was a cosmetic procedure!) I asked the doctor if it looked normal, there was such a crisscrossing of blood vessels. Apparently it looked absolutely normal.
It sounds to me that you need a referral to a urologist. If your GP is reluctant, then ask your neurologist to either refer you, or get him/her to write to your GP requesting that they refer you.
In terms of the pharmacist telling you that you use too many catheters, that’s sheer nonsense. I’ve been using 6 per day for a long time. It’s quite reasonable. Maybe you should start using one of the delivery companies, they then get your prescription straight from the GP and it bypasses your pharmacist entirely (have I said this before? If so, sorry, my brain is Swiss cheese!) There are several companies, I use Scripteasy, but there’s several others. If your doctor wrote a prescription for pads they could deliver those too I think.
I suggested to the urologist that a cost of £950 for Botox that lasts 2 years is cost effective when measured against the cost of catheters, drugs, pads, etc. He agreed. Unfortunately he still had to make the case for botox to the CCG. But he didn’t have any trouble getting their agreement.
Btw, if Betmiga is the only drug you’ve not tried yet, even when you get the prescription, keep in mind that although some people think it’s fantastic and it does the job for them, it doesn’t suit everyone. It made no difference to me, plus it elevated my LFTS (this is an unusual occurrence but my liver is a law unto itself).
Good luck with it. And let us know how you get on.
Sue
Thanks Sue. I’ve taken heed of all you’ve said!
I do use a delivery service for the catheters, and I cleared the increase from 120 per script to 210 with my GP, several months before the pharmacist interfered. He seemed to be accusing me of having altered the number myself, which is not possible, and said I was ordering hundreds every two weeks, which was not true. I order every five weeks.
I’m due to see the neurologist next month, if I don’t get any joy with the GP shall I wait till then or try ringing him do you think.
Eve xx
Hi Eve
I would probably write to the neurologist if you get no joy with the GP. The problem is that even when you get a referral to a urologist there’ll be a delay in getting an appointment. And you are experiencing miserable bladder problems now. The urologist I saw (who did the botox) was brilliant, I described the bladder spasms, the constant wanting to go, my inability to pass urine without a catheter in spite of the spasms, and I don’t even have the leakage problems you have. He said it was all typical of a neurogenic bladder caused by MS and he prescribed Betmiga in the short term whilst waiting for the funding decision for the botox.
I know that GPs never want to be told that another person with almost identical symptoms had such and such treatment, they only want to look at your symptoms and act according to their experience and knowledge. However, if you go into your GP appointment armed with the information you can find about both Betmiga and botox and directly request a referral to a urologist, I can’t see why they’d refuse it. Although if they did, as I said, I’d contact the neurologist rather than wait for the appointment. Before now, I’ve phoned the neurologists secretary and asked if I could email them something to pass on to the neurologist. That way quite often works.
Obviously I can’t tell you as yet that the botox is the end of my bladder frequency, urgency, spasms etc. But I’m really hopeful that within a couple of weeks I’ll be able to sit in a moving car without wanting a wee; I’ll be able to go out shopping or for lunch without needing to know in advance that there’s an accessible loo within easy reach; that I’ll be able to visit friends (who don’t have accessible loos), etc etc. And of course these are the kinds of things you need to be able to tell the GP.
I hope it all goes better than you’ve found in the past. I’d also mention the fact that you cannot manage without using a catheter 6 times a day (and don’t forget that for infection control, there are times when you have to throw one away because you’ve accidentally touched it, or dropped it!) it’s utterly ridiculous to limit the number you use. With my delivery company I have to stop them sending me catheters too early, I currently have loads of catheters because they’ve delivered early!!
Bladders are a flipping nuisance and if you have to fight and argue to get the right treatment it just makes it all worse.
Sue
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I’d mention it to your GP and/or get a referral to the continence clinic. I regret putting it off, and it just kept getting worse. An ultrasound scan will show if you are retaining urine. You’ll probably have to fill in a bladder diary, measuring everything in and out for three days, which isn’t as bad as it sounds. One of the reasons I put it off was that I had a hysterectomy 21 years ago, and thought it might have been because I hadn’t done my pelvic floor exercises. Retaining urine puts you at risk of infection. I’ve been lucky in that I’ve never had an urine infection, and my kidney function is normal, but I think it’s definitely worth mentioning to your GP or MS nurse if you are lucky enough to have one.
And so the saga continues. I’ve today been prescribed Betmiga. I’ve to give it six to eight weeks. If that fails then I’ll get a referral to Urology for urodynamics test. Fingers crossed the Betmiga does it. I’m at the end of my tether with all this waiting.