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Lulu

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Posts: 214
Reply with quote  #16 
Hi Nan

I use Uva Ursi for my bladder pain when Im in a flare, you can only use for one week, 5 times a year hence I only use when pain is really bad. But it really helps with my burning.
Hope this helps

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Lulu
Pearl

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Posts: 9
Reply with quote  #17 
Hi everyone!  Ive just joined!

I have been taking Betmiga for about 6 weeks now (previously I took Vesicare which didnt really help).  Betmiga (which I take in the mornings) helps to some extent in that I do not get up in the night to use the loo, but with the urge incontinence has been very little help.  I went back to the specialist today and he has prescribed me Vesicare again to take with the Betmiga, so I will see how that works!

He also suggested that I might have Botox injections in my bladder, which doesnt really appeal to me and he didnt really sell it either because he said that some people couldnt urinate after this procedure for up to 3 months! and they had to be catheterised.  He said "its ok though as we can teach you how to self catheterise...."

I thought "no thanks!"
ModeratorKate

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Posts: 1,650
Reply with quote  #18 
Hello Pearl
Welcome and thank you for updating us, do please keep posting as this always helps when someone is looking for information.

You will find we are a friendly bunch, with everyone trying to help each other, you will find so much valuable trusted information.

Also if you become a Member of COB they will send you some more information with lots more links.There is also much much more over on the website.

Do hope things work for you and you begin to feel some relief soon.

Regards
Kate

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http://bladderhealthuk.org/membership/membership-benefits
Pearl

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Posts: 9
Reply with quote  #19 
I havent had time to have a really good look around the forum yet, so there may be something about this technique, but I will tell you anyway! I have had this problem off and on since my children were born (25 years ago).  I have had two bladder repairs, the last one was about 3 years ago.  I am 51 years of age.  About 6 months ago I saw the continence nurse (I have never seen one before) and she was a lovely lady, just about to retire.  She asked me to try this :  When you feel the urge to wee, clench your pelvic floor muscles quickly about 10 times and see if it takes the urge away.  At the time I thought well, thats not going to work because I cant hold my wee if I clench my muscles! but when I got home I tried it and it does actually work! It has to be quick "pulses" though.   For me it actually (randomly) depends what position I am in.  If I have (for example) bent down to fill the washing machine, as I straighten up I will either feel the urge to wee or I will leak slightly.  Then the exercises dont work so well, but they have certainly helped. 

I have also started doing pilates and yoga.  I do pilates 3 times a week and yoga once.  There is a lot of pelvic floor work which Im hoping will help me.  Fingers crossed.


lou49

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Posts: 8
Reply with quote  #20 
Hi everyone.  Still following this thread with great interest.  No improvement from Betmiga yet (well, it's only about a week!) and in fact it's been worse for the past three days or so - but maybe that's the after-effect of the cystoscopy nine days ago.

Pearl - I was interested to read your postings - especially the tip from the continence nurse about the pelvic muscles.  I had a leak yesterday and was trying to relax and breathe my way through it but it didn't work so will certainly try your/her tip!

At the moment i feel a bit 'taken-over' by the bladder problem.  We're off to Lisbon for three days next week and i feel a bit worried about it.  But on the two occasions this year when we were away for short breaks my bladder issues were quite a lot better.  The urologist said that this is because bladder and autonomic nervous system are all connected, so a change of food/routine/reduction of stress (boy, do get stressed, lol!)

Got my membership pack yesterday and there's lots to read in it so will be studying the OAB handbook.  Have booked seats on the plane near the loo and will wave my 'Can't Wait' card around if there's a queue.  Bit embarrassing, but tbh at 61 I'm past caring!

Louise

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Louise
Pearl

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Posts: 9
Reply with quote  #21 
Louise - hope it works for you!  I find the urge incontinence is a lot worse when Im at home.  I dont quite understand why.  When I am at work I never have any problems (well, hardly ever).   At home i.e. when I am walking my dogs, coming home from shopping, engrossed in housework it is a daily problem.

Having said that I have been taking Vesicare + Betmiga for approximately 3 days now and I have had no issues (touch wood!).

Also, I am quite overweight at the moment.  I am trying very hard to lose some weight.  Maybe this will help.[thumb]
lou49

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Posts: 8
Reply with quote  #22 
Ooh, that's very interesting Pearl.  I didn't know you could take Vesicare and Betmiga together.

Went to GP's yesterday afternoon and saw very nice GP (not 'mine' as she's on hols).  Explained that they can't prescribe Betmiga because it's so new, don't know if it works, monitoring for side effects and so on.  She's relatively new to the practice so am hoping that 'my' GP will be able to override this and in meantime trying to get another week's private prescription until I can see her, which is v annoying.

In the meantime a kind member called 'Ice' replied to my other posting about diet, in the overactive bladder section.  Need to study this as all rather depressing as I like the way I eat now!

So flustered last night that actually forgot to take the Betmiga!

Am having a back MRI at 5pm today and am going to take 5mg of diazepam (which GP said was OK) as am concerned about lying absolutely still.  Can hardly wait (to take the diazepam I mean!) but will be interesting to see if it helps with bladder stuff - am quite worried about not being able to get up from it to go the loo as it makes me anxious.  Well, you can, but I think that they have to scrap it and start it again (which NHS facility won't be too thrilled about!)

Louise

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Louise
totpotpink

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Posts: 36
Reply with quote  #23 
Hi everyone,

I haven't been on the forum for a long time now but am having problems with my urologist and problems getting the drug that he wants me to try - Betmiga/ Mirabegron because he is in a different PCT to where I live.  He keeps dishing out initial prescriptions for drugs such as Toviaz, pregablin and this new one and is totally disinterested in the fact that Bucks will not prescribe them to me.  I need to find a Bucks based urologist who will actually take the time to listen to me.  Every time I have seen my consultant at hospital, he has no notes, keeps asking the same questions which are mostly not pertinent to my case and has his own agenda.  I come away feeling total despair and isolation - IC is so poorly understood by most GP's and I feel anxious most of the time which in turn triggers flare ups and unbearable pain.

So sorry to sound such a pessimist but I am sure many of you will sadly know that sense of frustration and not being listened to.  If anyone in Bucks can recommend a good, caring urologist, please message me.

Thank you so much for reading my post and hope everyone is having a relatively good day.

Angela
x

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Hello, my name is Angela, I am 52 years old and have suffered with IC, stress and urge incontinence for 6 years. I have had to give up work and despite numerous and varied treatments, my symptoms and the horrendous pain and bladder irritation continue. COB is a lifeline and I have met some lovely friends through membership. Thanks for reading my profile x
Pearl

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Posts: 9
Reply with quote  #24 
So sorry you are struggling with it all [frown]   Honestly, I'm not sure that Betmiga is the "wonder drug" that it is being billed as but time will tell I guess.

Since starting the Vesicare with the Betmiga I have had no incidents with the urge incontinence at all.  No leakages.  [eek]  Its only been 6 days so I am not too excited as I remember with just the Vesicare things got better and then got worse again.

I hope by the time you read this you are feeling much better.  It sucks that you are getting no support from your specialists and GP.  [frown]
totpotpink

Registered:
Posts: 36
Reply with quote  #25 
Quote:
Originally Posted by Lulu

Hi Angela
I also cannot get toviaz here in Leicester, the urologist prescribed it yet I cannot get it as the PCT have denied this pill here. I cant even get it privately. Its so frustrating
Im being passed from urologist to urologist, I have to have another procedure next week despite having it only 4 weeks ago and I had to be admitted overnite because of the pain, Im still getting over a very bad flare which I needed morphine for and I have to go thru the procedure again.
And if anyone says its a UTI again I will scream[rolleyes]

Thank goodness for cob and its members


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Hello, my name is Angela, I am 52 years old and have suffered with IC, stress and urge incontinence for 6 years. I have had to give up work and despite numerous and varied treatments, my symptoms and the horrendous pain and bladder irritation continue. COB is a lifeline and I have met some lovely friends through membership. Thanks for reading my profile x
totpotpink

Registered:
Posts: 36
Reply with quote  #26 
Hi Lulu and Pearl

Thank you both for your replies to my post.  Lulu I am sorry that you are being passed from pillar to post and in so much pain and discomfort.  Sadly I feel there is too little known about IC amongst family doctors and I do feel that they cannot understand why we feel such pain when often the urine test comes back clear!  It is also frankly disgraceful that dependant on where you live in the country, treatment available is selective!  It is called the NATIONAL health system but should be renamed REGIONAL health system!

Wishing you well in your fight against this wretched illness and try and keep smiling[biggrin]

Angela

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Hello, my name is Angela, I am 52 years old and have suffered with IC, stress and urge incontinence for 6 years. I have had to give up work and despite numerous and varied treatments, my symptoms and the horrendous pain and bladder irritation continue. COB is a lifeline and I have met some lovely friends through membership. Thanks for reading my profile x
lou49

Registered:
Posts: 8
Reply with quote  #27 
Hi everyone.  Came back from our mini-break to Lisbon (brilliant destination BTW, can't recommend it too highly, and fab weather) and as I suspected.....things with the overactive bladder were a lot better.  So either I need to be on holiday all the time (chance would be a fine thing....) or the Betmiga is starting to help (but only had two weeks worth) or it's just a coincidence.

One thing I just wanted to share though - couple of years ago I was prescribed Amitryptiline for IBS - only took 5mg (splitting a 10mg tablet) which one doctor (a psychiatrist actually, who  said it was used in low doses for pain, IBS etc) told me wasn't enough to knock out a fly!  Haven't taken it for ages but thought I would have a go again to see if it helps with the incessant loo visits during the night.  Does seem to help - have only been having it for the past six nights, but have only been up twice which is a big improvement. Of course, it may just be a fluke, and now I'm back to everyday lie and the attendant stresses, it'll all start acting up again.....

I suspect that I might have to do some kind of a multipronged approach here, and that this is only the beginning..... Talking of stress, off to do a ton of laundry, lol....

Here's the link:-

 http://www.drsusanevans.com.au/amitriptyline-and-how-to-use-it/



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Louise
Sel

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Posts: 162
Reply with quote  #28 

Hi All!

Any news anyone?

Finally Betigma has become available in my country too. Have just spoken  with my uro over the phone, he recommended the 50mg dose, he said I can it every other day, not necessarily every day, perhaps I do that to start with. And I don't have to discontinue Diazepam, which so far has helped me to get some sleep at night. I suffer from very high frequency but, at least not yet, not incontinence, on the contrary as a side effects of some medications I suffer from retention, for instance can't take Tramadol. Have to be very careful with that as I suffer from BC too. Whatever I do it always seems a no-win situation. :-(    He suggested taking it in the evening at the same time. Will see my GP and ask her to prescribe it,  will keep you posted.

EDIT:

How long were you told you it would take for some improvement to show? I was told possibly a week. 
 


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Suffers from IC, BC and overactive bladder.
CQ84

Registered:
Posts: 26
Reply with quote  #29 
Hi Sel,

I have been taking mine for about 4 weeks now, started when I had my first cystistat instills. I've seen some improvement and although I still go very frequently and have urgency I haven't had any full on accidents since I started. I've been having some issues with the actual cystistats but its nice to be able to do a car/train journey that is more than 30 minutes without having an accident.. Although I still wear my tenner lady knickers just to be on the safe side.

I take 50mg at night before I go to bed.. I don't get up half as much as what I used to, so although at the moment its only a small improvement I'm happy with that but I'm not sure of its a combination of the instills and tablets that are helping.

Let's us know how you get on and good luck, fingers crossed.

Caroline x

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Keeping positive..
maryellen

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Posts: 7
Reply with quote  #30 
Hi everyone,

Re Betmiga;
Had a couple of weeks on 50mg Betmiga with not very good control of my OAB. As we were due to go on holiday walking in the Lake District (short walks only) on the 16th September I asked my GP if I could go back on ditropan for a week or so. Within a couple of days of going back on ditropan my symptoms improved and I was able to enjoy our holiday. I should have gone back on to Betmiga when we got back but I didn't. I am due to see my consulant today so he probably won't be too happy that I didn't continue to take Betmiga! Will let you know what he says.

Like others I have also noticed that OAB is much less of a problem when I am on holiday, presumably because I am more relaxed. I once said to a urologist that I thought that was a "psychological" aspect to the problem but he dismissed this out of hand.

Maryellen
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