I'm 44, female and official diagnosis of OAB with constant wetting. Need some advice

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 last week I had 2nd lot of Botox injections and both haven't worked.  I have no feeling when my bladder is full or wetting until it's too late. I wear massive incontinence pads and I can still wet my clothes. This has been going on for a year. Since last Tuesday I use about 18 pads every 24 hours. Prior to Tuesday I had a long term indwelling catheter for 3 months which have caused urethral pain. I have been treated with uti's and since Botox I have sometimes have pain before I urinat.  I am now having the indwelling catheter put back in in 1 week as I feel there is no option.

i am on the list for a sacral nerve stimulation device but this can take up to 4 years.

 I feel so alone with all this and get really depressed and at times thoughts of suicide. Is there anyone that can give me advice or are going through similar stuff?

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  • Posted

    Hi Nic,

    It sounds absolutely awful what you are going through. I know it can be hard to stay positive when procedures and treatments do not work and you have an ongoing problem. Whereabouts are you? I do not have the exact same problem as you, but I have been catheterised since Oct 2015 and do not have an appointment to see a urologist until May. I am also fed up of the uncomfortable indwelling catheters and endless UTIs.

    I imagine you are already monitoring your trips to the loo to reduce the chance of accidents. I have no idea if this can help in the long term or what to suggest. How long has this being happening? When you have the catheter, do you use a flipflo valve or a legbag? The valve might give you a better sense of controlling when you go to loo.

    Do you have any family near you for emotional support?

    Gina

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    • Posted

      Hi Gina

      thank you for replying so quickly. I had a fall a year ago which effected the lower part of my back and then 3 weeks later I lost the connection between my brain and my bladder. I have been constantly wet since other than when I have the indwelling catheter. I've tended to use a leg bag cos using the flipflo valve causes a lot of pain.

      i live in Suffolk and have been under a urologist in Cambridge for a while now. i feel the specialists have no understanding how this has a huge impact on everyday life as well as family. I try and talk with my family but they don't know how it feels.  

      I came across this website by mistake and it's a huge relief to talk to someone who have an understanding.

      thanks once again Nic

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    • Posted

      Yes, it's difficult for family to understand how it feels to lose such a basic function and have to deal with it on a daily basis. It does affect all aspects of everyday life as you say - the fear of leaks. My valve slipped off the end of the catherter only yesterday. Luckily I was at a very good  friend's house and it was not so embarrassing or a big deal. But I worry this could happen anywhere at anytime. Are you back at work?
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    • Posted

      I sort of returned back to work in October but have been in hospital due to pain a few times since.

      Luckily I have a job where I spend time in the office, on visits as well as from home. Yesterday I was on a visit and spent the whole time worrying whether my clothes were wet!

      hope you don't mind me asking but how old are you?  Have you had a problem for long?

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  • Posted

    Hi Nic, I'm so sorry that you are suffering too. I am like you female and in my forties and don't expect to have these types of problems at our age. My urologist has said that he can't do any more for me now and referred me up to London. I've got to undergo all the tests again, like urodynamics etc. Ask them about self catheterising as it will give you more control. There is definitely things that they can do to help in your situation. My situation is that I have the urgency and I self catheterise, I have a reoccurring UTI and am allergic to nearly all oral antibiotics. I have no GAD layer in my bladder so feel the most horrendous pain when I get an infection. The pain makes me feel like ending it all, as I cannot take any more. The pain is a hundred per cent worse than child birth or anything I've ever experienced. I'm surprised that Botox hasn't worked for you. Sounds like your problem is the opposite to mine. My bladder won't empty and yours is emptying too much. My urologist won't do sacrel nerve stimulation, as he said it can cause other problems with the spine, so I suggest you do your research first. Have you been in touch with COB uk charity? They are amazing for offering support. I was so grateful to come across them.

    Good Luck and really hope you can get some help. X

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    • Posted

      Thank you all for replying and all your quick responses.  

      Last time I had Botox I self catheterised but they told me not to do it this time as my bladder empties itself, although I am wondering whether it is emptying completely.

      I have tried loads of different types of medications which so far have not worked. 

      I also have reflux which causes pain in my left kidney.

      i try desperately to stay positive but really struggle at times.

      i will look up the cob charity, so thank you for that

      Nic

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  • Posted

    Although lve intersticial cystitus lve not had those sort of problems, but it took years of pain poor health to get diagnoses and treatment,which did help, l read that the bladder is one of if not the most sensative organ. l was put in touch with c.o.b. by urologist, and found them very supportive, whether on forum or expert advice, l think you can also ring them up if need be.  The founder of `wee ray of hope` which was taken over by c.o.b. also a friend penpal who l met through them had terrible times and didnt respond to anything, and did decide as last resort to go for urostomy, often only done for cancer, but if no other way to help its there, but rarely done, my friend went private to consultant and had to battle for it, years on she,s no regrets. But check out c.o.b speak to others on forum whove had same problem, ring them up if desperate any time. Hope you can get advice and support to help you cope till improvement. 
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