Has anyone been to a pelvic floor therapist for urge incontinence?

[JacknDiane]

How did it go? I've got a doctors referral but just found out its a 52 week wait on the NHS!!!

I've been using vagifem for years. Also taking Jude tablets. Tried solefenacin and another one i forget its name...now trying micrabegron. Been on it a few months. Have had a urine test, no infection. I have urge incontinence and its worse at night in bed, I need to use tena lady maxi night and even then I can still leak onto my bedsheets.
This is really awful and getting me down. I've cut out caffeine, sweeteners and fizzy drinks. I try to not drink after 6. So much so I often get a dehydration headache at 5am the next day.

Im really at my wits end. Im not on hrt, Tried the patches and they didn't help. Am nearly 60 and don't know if I should try hrt again (they started me bleeding my boobs were enormous)...or a private pelvic floor physio...or what?

I really dont know where else to turn.
Any advice would be really appreciated.

Had my ( one ) appointment last year . My NHS trust will only send you appointment if you agree to a group appointment first . I think there was about 15 / 20 ladies and the appointment lasted about 2.5 hrs .
The instructor went through the types of incontinence and lots of symptoms / strategies to cope . She also talked us through pelvic floor exercises and gave us handouts .
She also suggested the nhs squeezy app ( there was a cost , I'm sure it's less than £5 )
Then after a few months I got my 1 to 1 appointment . She went through how to do the exercises and asked if I had downloaded the app .
I had and was doing them religiously .
Then she said it was completely optional but could check if I was doing them correctly and the strength of them .
This was done on an examination couch where she inserted a finger whilst she ran me through a series of pelvic floor exercises and then that was that . The appointment was probably 30/40 minutes .
I've been continuing the pelvic floor app ( you do it 3 times a day and total 60 squeezes of various lengths a day ) and have only missed / forgot I session so have a 99% record !😂
Tbh it's now 2nd nature to do them and I do it more often daily than on the app so more than likely 100 a day .
My last consultant appointment they said I had very good pelvic muscles and there is an improvement .
Having said all that I was told I could have an op to repair the prolapse if I wanted.
I have a bladder and a bowel prolapse .

Sorry for the long post but I wanted to give you the full info of my experience .

Thank you @WinterBerry40, that was very helpful to me. Im glad you have found the exercises to be helping you. Im not sure im actually doing them correctly and I haven't got into a habit of doing them yet. I wasted time before doing the wrongly and now im unclear if im actually doing them right. I would welcome an examination to see if im doing them correctly. But waiting 52 weeks for it seems ridiculous. I will probably end up going private, but im not sure the best way to find someone and I dont have money to waste on someone who can't help me.

I just feel its all a bit of a minefield and the waiting list of a year here is really bad.

Have you seen a urologist? A good urology clinic will refer you to a pelvic floor physio pretty quickly for a pelvic floor exam to determine whether it’s your pelvic floor that is part of the issue. or at least the ones I know of would

a Urologist may also check if you are a candidate for Botox if that’s something you think you would consider?

My Pilates teacher periodically teaches a six week pelvic floor strengthening course that she developed with the input of her daughter who is a physio specialising in women's health. She runs it over Zoom so your location is irrelevant. PM me if you'd be interested.

I did it a couple of years ago -- in the pilot class; I want to say she charged about £150, but it definitely helped me needing to get up so often in the night. There are a series of short exercise demo videos too so you can be reminded.

Hi @Papyrophile, I can't PM people, im not sure how that's done? I would be interested in that though. Although I haven't seen anyone and I dont know if this is related to my pelvic floor.

Im not sure how id see a urologist? My gp has never mentioned this, and I've seen a few gps at my practice about my bladder. The visit where I was referred to woman's physio actually came about as I just said I dont know what to try anymore but id heard of woman's physio so thought maybe that? And the gp said they either have that or the incontinence team, so what one would i prefer?? But I hadn't a clue what either one does so I don't know why she was asking me???

This is the problem, no one I've seen at my surgery seems to have a clue who to refer me to. I've never heard them mention urology.

Hi JacknDiane I have been through very similar over a period of many years and the problem - which is mainly urge incontinence but with a good wallop of stress incontinence thrown in - has just got worse despite following all the advice and cycling through Solifenacin, Tolteridine, Mirabegron and at least one other med I can't remember the name of over and over.

I recently had a second appointment (after an 18 month wait) as I was getting so distressed about the deterioration. The new doctor has upped my Tolteridine (now on 2 x 2mg daily), which I take along with Mirabegron, where previously it was one or the other. I also have Estriol 1mg internally. I have noticed a huge difference in the 3 months I have been on the new meds. I'm still very careful and follow all the advice but can now go 2 - 3 hours without 'emergency', and one day went 5 hours without panicking. I honestly can't believe the difference. The stress still causes leakage but it's much more manageable and I'm basically on one Tena daily and one at lnight.

I am still being monitored and of course I would prefer not to have to take medication but without that magic bullet, it's a much better situation. Your GP doesn't need to wait on a specialist to try this so please do ask. I absolutely hear you and empathise completely. Good luck.

Thank you @inmyheadimthequeen.
Do you think the tolderadine is the magic bullet? I already take mirabegron and i use vagifem pessaries twice a week. Maybe im not using enough?

Vaginal oestrogen (vagifem) helped mine enormously. And cutting out sparkiling water.

I was prescribed the vagifem every day for 3 months then cut back to 4 times a week.

@JacknDiane You've had lots of replies but most of them are about stress incontinence, not URGE and that's different.

Stress incontinence can be improved with pelvic floor strength and by using vaginal estrogen.

But urge incontinence is like over active bladder and won't always respond to pelvic floor exercises. It can be helped by vaginal estrogen and yes, you may need to use vagifem more (it can be used 5 x a week.)

I assume by urge you mean you lose control and the urge to wee is so great you can't stop? And it happens suddenly?

Stress incontinence is when you increase pelvic floor pressure by jumping, dancing, running or lifting something heavy .

The usual treatment for urge incontinence is drugs to relax the bladder.

I'd suggest you seek a female pelvic floor physio for an assessment and take it from there. They can advise on what's best.

Also if that doesn't help you should see a gynaecologist who specialises in pelvic floor because you may have an element of prolapse where the urethra has dropped and the urine just flows out.

Help is there- you just need to find it and it may mean privately as this isn't considered a priority with NHS gynae stuff.

Hi again JacknDiane, I'm afraid I don't know if Tolteridine is the 'magic' solution - in fact I thought I did slightly better on Propiverine for quite a long time but the effects became less after a year or two which is when I switched to Tolteridine. What I think had made the bigger difference is taking the Tolteridine and Mirabegron TOGETHER. I had previously had less success with each of Tolteridine, Mirabegron and Estriol separately - they all helped to some extent but nothing life-changing. It's the combination that has been transformative.

I agree that urge and stress are different problems and need different approaches - in my own case it's the urge that I am focused on as it is the more distressing problem. I have not gone private but have had to rely on the NHS to date.

Yes its definitely urge incontinence. I can sneeze and cough and I've never had urine leak. Its the sudden urge and also the fact urine does just leak out at night. I didn't think I had a prolapse as nothing is hanging out but I can feel something inside me close to the opening. I've never been examined, although this has gone on for years. Im currently waiting on an NHS waiting list to see a pelvic floor physio and the waiting list is a year long.

Im in despair actually.

If you possibly can you need to see someone privately and be examined. A women's physio may be okay - look at the website of your local private hospital for this service or google with the search terms as some physios work privately.

You may have a mixture of urge, stress and a possible mild prolapse. Nothing will 'hang out' if the outlet from your bladder has dropped but you may feel a slight bulge as if something is there. You can have a very simple test to check the angle of this and if it's out of position.

Drugs to relax the bladder can help as well as bladder training where you train your bladder how to 'hang on'.

A private physio may charge anything from £60-£70 for the appt so that's a guide.

I'd start with that and if it's not helpful, you may have to look at seeing a gynaecologist who specialises in this again, paying if that's an option.

Meanwhile why not increase the Vagifem? Medical guidance is you can now use it 5 days a week (because the current formulation is only half the strength of the old version when it was used 2 x a week.)

Im taking medication but I might try getting examined. As I said im getting nowhere fast on the NHS so I might need to go private. I was recommended a good physio but she seems to specialise in pelvic floor after childbirth. Im nearly 60 and this started in menopause so I know its related but htt didn't help.
Would a pelvic floor therapist be able to advise me if I have a prolapse?

Would a pelvic floor therapist be able to advise me if I have a prolapse?
Possibly. They are likely to be able to identify a uterine or bladder prolapse but urethral may need more expertise.

Some regions have incontinence clinics - have you looked for one of those?

My advice FWIW is that you get a proper diagnosis because sometimes doing LOADS of pelvic floor exercises if you have an over active bladder can make things worse.
They also say that doing more than 30 a day doesn't help any more, and in fact can make the PF weaker or 'tighter' but not in a good way.

If you want advice on how to do PF exercises, google Elaine Miller women's physio who does 'amusing' videos on how to do them.

My gp asked me if I wanted to see the incontinence team or the pelvic floor physio? She actually asked me and I said I dont know, as I dont know what they both do, but maybe the physio? The gp didn't seem to have a clue and the wait for the physio is a year. I think i will go back and ask to see the incontinence team too. I just wish my gps had more of a clue. They are both younger women than myself and really don't seem able to understand this problem at all.

Thanks everyone for the advice here. Im on minimum wage but im willing to pay to see someone to tell me what's wrong. But I don't know in what direction to go, should I pay to see a pelvic floor physio first? Or are urologist? Or are gynecologist? That's assuming I can actually get an appointment with the last 2? What i can't do is pay for something that won't examine/scan me and tell me what's wrong. I haven't the money to pay various private appointments, I just need to go to someone who could properly tell me what's wrong and set up a treatment plan. But I honestly dont know who I should go to, what their title would be?

Take up the offer of the incontinence team (NHS free). I am sure you can refer yourself- have you googled for the one in your area?

If that doesn't work out, pay for a private physio . Worth the cost of around £70. Don't rule out ones who work with women after childbirth because they will also know more about bladders than just post- childbirth.

Increase the Vagifem to 4-5 times a week.

If you have no actual weakness, or they can't find prolapse, you may need to see a gynaecologist but I'd wait and see how the other appts go first, as that would cost you around £300.

Be positive- you'll find someone to help.

A specialist pelvic physio can be really helpful in working with you to understand what’s going on and management tactics.

On where to find - the POGP website and squeezey app both have lists of specialists. A single private appointment can be really helpful
so you’re not committing to long term.

Worth making some enquiries with them rather than just booking, see if they think Theyre the appropriate person to see. There’s a lot of overlap with post natal so that’s not a red flag but you probably want someone who does a range not just post natal.

Hi OP. Most pelvic physios work with women of all ages.

Mine is wonderful. A warm comfortable room, twinkly spa music. Internal exams, assessed all my muscles. Told me about my prolapses (I have them all).

This would be a good and economical start.

But if you decide to go further, a uro-gynae privately. I can recommend one in the far south if you are in that area.

Roughly £250 for an initial appointment.

Thank you all again, you are making me feel much more positive. I feel with all your advice I may actually get somewhere here. I will get onto this and try to see the incontinence team first, though god knows what their waiting list is like. I will also contact the woman's physio again I was recommended. Unfortunately im not in the SE, but thank you!
I really need to get somewhere with this. Its really affecting my life and confidence. I dread going to be at night as im scared I'll wake up soaking. I dont sleep with dh anymore due to this. Im so embarrassed and ashamed to be like this, it just feels shameful to wet the bed. And I dont go anywhere as I'm scared I wet their beds!!
Im not even 60, surely im too young to be like this? My mum didn't suffer this way and she died at 85.

I just want to sleep all night and not panic about waking up wet. Again.

Hi OP, I really wouldn't wait for the incontinence clinic. By all means get on their list, but in the meantime a private pelvic physio could really help you.

I’ve had years of urge incontinence, cut out caffeine, and various other foods and drinks, have been on various drugs, saw a brilliant women’s physio at a continence clinic and did all the pelvic floor exercises and bladder training but without much improvement.
I ended up getting Botox privately as the nhs waiting list where I am is 6-9 months. It was amazing! I went from going through 3 or 4 normal tenas a day to one mini tena a day, which I mostly didn’t need but didn’t quite trust going without any protection. Unfortunately it wore off more quickly than I hoped and I’m now on the nhs waiting list again.

The consultant told me that having a strong pelvic floor won’t necessarily stop urge incontinence as the bladder gets a message to empty which overides the tightening of the pelvic floor.

Can you get a referral to a continence clinic?

Thank you! That’s helped me a lot because I’ve never been clear which my problem is and now I know it’s urge incontinence.

I’d really recommend seeing a private pelvic physio. Do some research and see someone experienced; there’s a lot of physios tacking on “and pelvic” to their remit but it’s quite a specialised area. The POGP website is a good starting point.

Contrary to the advice above, urge incontinence is more often caused by a too-tight pelvic floor and in this case, things like the NHS Squeezy app could make it worse. If your pelvic floor is too tight it can send “false alarms” to your bladder which results in the urge to go. This triggers reactivity in your bladder and the cycle ensues.

I’ve seen a pelvic floor physio pretty extensively for UTIs and I’m yet to do a kegel exercise because it’s contraindicated for my overly tight pelvic floor.

But would a too tight pelvic floor allow involuntary leaking? That's my main issue, although the urge to go is awful too.