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lisacornwall

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Posts: 21
Reply with quote  #1 
Hi all, me again. I have overactive bladder and a cystodistention two months ago has made the symptoms horrendous. I am only 26 and really struggling with life at the moment, I was under the impression that the procedure might not make my symptoms better but I didn't realise it could make them worse. Since the op I have also had extreme anxiety and have been suffering from panic attacks, triggered by my bladder being irritated. I'm trying so hard to get back to normality and my work have been really good, but I'm still struggling to do a full day, my bladder is either irritated making me anxious or I'm just too scared to drink, making me feel unwell.
I have an an appointment with my consultant on Thursday and am going to write a list of things I need to ask him, most importantly how I can stop this hell at the moment. I know that my bladder had a very low capacity of 200ml when under anaesthetic and when I'm awake I can't even hold 100ml, sometimes it's so irritated that I feel the urge to go even when there's virtually nothing in it.
Does anyone have any suggestions of things I might be able to ask him about, medications to try etc.

I feel like my life is on hold at the moment and no matter what I do nothing helps. It scares me to feel this way, no one really understands the level of fear and anxiety that I'm suffering from, and I've never felt this bad in my life, I'm dreading the consultant telling me this is it for me now, this is my life, I cannot deal with it. I dread waking up in the mornings for fear of how my bladder will be and sometimes I'm scared to go to bed. I don't know how much longer I can keep fighting this, I'm exhausted and I need help, but I just don't seem to be getting it.

Please someone tell me where to go for help, I'm trying my hardest. As much as it hurts me to even say it, I keep thinking there's only one way out of the hell, and I dismiss these horrible thoughts, but I find they keep returning. From an outsiders perspective it sounds ridiculous, it's only going to the loo, but I think I've reached breaking point. I'm sorry to be so dramatic but I can't say this to anyone so typing it seems better,

Please help [frown]
LeanneL

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Posts: 2
Reply with quote  #2 
Hi Lisa, I am 24 and suffer with oab. Ever since giving birth to my daughter I have suffered with bad oab for over a year now. I can completely relate to everything your going through! The anxiety, the sleepless nights and the burning stinging pain! Even though your anxious, always aim to drink 2 litres a day that way your stopping the risk of a uti. My consultant has put me on vesicare 10mg which works really well, I can go for weeks with no pain and not running to the toilet as much then I will get a flare up due to stress or anxiety which can always make things worse. At night try a hot water bottle on your bladder, it takes the sensation of needing to go away so that you can relax.
Here if you need a chat as I can 100% relate and I hope you get the help you need to get to the bottom of it and the right meds!

Leanne.
lisacornwall

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Posts: 21
Reply with quote  #3 
Hi Leanne, thank you for replying. I find it so hard talking to my friends or boyfriend about it as they all seem to have the most amazing bladders and I just get bladder envy, I'm also dreading the thought of having children for fear of what it might do to my bladder. I only suffer with frequency, never any pain or burning (touch wood) other than after my op, but the anxiety is crippling me at the moment and it's hard to tell if my bladder is worse because of that aswell. What is vesicare actually for? I have tried several medications that haven't worked and vesicare is one I don't recognise but keep seeing being mentioned. Even a 20% improvement would be amazing.

Thanks, Lisa x
ModeratorKate

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Posts: 1,651
Reply with quote  #4 
Hello Lisa

"Please someone tell me where to go for help"

Do telephone our Advice line, they will ALWAYS return your call, also on a Wednesday we have our Nurse on line, who will offer you some advice.

As a Member of BHUK you will have access to much more support., we have special advisors on hand, and Susannah is especially able to support re pregnancy. 

@ Leanne Welcome to our Forum, Thank you for replying to Lisa, this is what,the Forum aims,  for everyone to help each other, as it is so comforting to know, there are others with similar symptoms and understand.

Please do keep posting, you all make the Forum a success.

Kind regards
Kate



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lisacornwall

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Posts: 21
Reply with quote  #5 
Thanks Kate. I have become a member recently, I received a welcome pack yesterday, what do I do now to access the extra support?
ModeratorKate

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Posts: 1,651
Reply with quote  #6 
Hi Lisa
Well done, ring the Office tomorrow, they are very small office and very understanding. ask to speak with Susannah Fraser, not sure which days she will be in, but as I say anyone will be able to assist and direct you.Also remember Karen the Nurse is in the office on a wednesday,that you can speak with.

Also do remember you are not alone, we will always listen, so any little niggly or big niggles post them on here, and hopefully you will soon be able to build some confidence back into your life.

Do show your partner, family and friends, the magazine from your pack and any other bits, as this will help them begin to understand how debilitating and despairing this dreadful dis-ease affects.

Take care and as always kind regards
Kate

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Anne_44

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Posts: 37
Reply with quote  #7 
Lisa, I can completely empathise with your problems as I too have an overactive and over sensitive bladder.  It is hell and I so understand.  I have been sleep deprived for the past decade and like you sometimes feel there is little point in carrying on.

Have you been offered instillations?  Cististat I think it is called?  It is supposed to calm the bladder down.  I started my course of 6 (1 x weekly), but only got to number 4 as of the 4, 2 caused me to get a UTI.  The nurse was furious with me!  "Her Ladies" never get UTIs when she does the instills!  Well, I did, and that was the end of any help I have received for my problems over the past decade.

Not everyone gets UTIs from this treatment though, so it really is worth pursuing.

Elsewhere on this forum I have read that the following can be beneficial for overactive bladder conditions:

1) Pumpkin seeds -

2) Tolterodine is used for: Treating overactive bladder with symptoms of urinary frequency, urgency, and leakage. It may also be used for other conditions as determined by your doctor. Tolterodine is an antimuscarinic (anticholinergic) agent. 

3) Mirabegron is used for: Treating overactive bladder with symptoms of an urgent need to urinate, a need to urinate often, or leakage of urine. Mirabegron is a beta-3 adrenergic agonist. It works by relaxing muscles in the bladder. 

I do wish you all the best of luck in pursuing what will work best for you. Anne xx
lisacornwall

Registered:
Posts: 21
Reply with quote  #8 
Hi Anne, I haven't heard about installations, however after the horrible side effects of my last procedure I am extremely reluctant to have anymore invasive procedures. I have tried both the medications you suggested and unfortunately they had no effect for me. I fear I just have to be persistent and firm with my consultant, who unfortunately isn't too easy to talk to, and seek second opinions if nothing is suggested. In the meantime I am also battling with my anxiety so getting the correct medication for that is also proving tricky. It's just been a very difficult period of my life, however it helps having lovely people who empathise.
GeorgieGirl

Registered:
Posts: 22
Reply with quote  #9 
Lisa,
I am sorry you are having such a bad time. Your symptoms sounds far worse than mine were but this is what helped me. As a drug the one that has worked for me is Oxybutynin. It was far more successful than Mirabegron. It does take some time to be effective though. I was also prescribed Noratryptilene and than has also calmed the nerves to that part of my body. Finally do not underestimate the benefit of sticking to an alkaline diet. I was a bit sceptical at first, but I elmininated acidic food and have stuck to that. Initially I found that drinking a glass of bicarbonate of soda was soothing but you do need to check if you can take that. My urologist had suggested instillations and I went ahead, sadly I had an infection after two and that made things worse. My GP told me to give everything time to settle. Not what I wanted to hear but it was the best advice for me. Look that is my story, I hope that it might give you some things to think about. My very best wishes.
Sue
liz210

Registered:
Posts: 6
Reply with quote  #10 
I totally sympathise having had OAB for most of my adult life.  Just recently I have been taking mirabegron together with vesicare as it was mentioned in the latest magazine and I don't want to jinx it but it seems to have helped.  I have been taking it for 2 months now and am also on steroids for something else so I guess this may be having an effect as well but I will be off these soon so will find out!  It is worth a try!
Polly47

Registered:
Posts: 2
Reply with quote  #11 
Quote:
Originally Posted by lisacornwall
Hi all, me again. I have overactive bladder and a cystodistention two months ago has made the symptoms horrendous. I am only 26 and really struggling with life at the moment, I was under the impression that the procedure might not make my symptoms better but I didn't realise it could make them worse. Since the op I have also had extreme anxiety and have been suffering from panic attacks, triggered by my bladder being irritated. I'm trying so hard to get back to normality and my work have been really good, but I'm still struggling to do a full day, my bladder is either irritated making me anxious or I'm just too scared to drink, making me feel unwell.
I have an an appointment with my consultant on Thursday and am going to write a list of things I need to ask him, most importantly how I can stop this hell at the moment. I know that my bladder had a very low capacity of 200ml when under anaesthetic and when I'm awake I can't even hold 100ml, sometimes it's so irritated that I feel the urge to go even when there's virtually nothing in it.
Does anyone have any suggestions of things I might be able to ask him about, medications to try etc.

I feel like my life is on hold at the moment and no matter what I do nothing helps. It scares me to feel this way, no one really understands the level of fear and anxiety that I'm suffering from, and I've never felt this bad in my life, I'm dreading the consultant telling me this is it for me now, this is my life, I cannot deal with it. I dread waking up in the mornings for fear of how my bladder will be and sometimes I'm scared to go to bed. I don't know how much longer I can keep fighting this, I'm exhausted and I need help, but I just don't seem to be getting it.

Please someone tell me where to go for help, I'm trying my hardest. As much as it hurts me to even say it, I keep thinking there's only one way out of the hell, and I dismiss these horrible thoughts, but I find they keep returning. From an outsiders perspective it sounds ridiculous, it's only going to the loo, but I think I've reached breaking point. I'm sorry to be so dramatic but I can't say this to anyone so typing it seems better,

Please help [frown]
Polly47

Registered:
Posts: 2
Reply with quote  #12 
Hello Lisa,
I know exactly how you feel, I've been diagnosed just this week.
I'm in such pain and frightened to eat or drink. The posts I read mostly saying that they have found a solution that works for them, so I feel I must try anything and everything.
My life was meeting friends for coffee and at my age I felt I deserved to enjoy life, I'm nearly 70! Now, I don't leave the house! I'm sure we will improve, we have to keep hoping! Hope things feel better very soon, you're definitely not alone! X
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