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ModeratorKate

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Reply with quote  #136 
Hi Erin 
Welcome to our Forum, I am sure you will find much to assist you manage this dreadful dis-ease,sadly we are all different and react differently, but I know you find reading a great help.

Could I also ask you to contact and join COB, as they have so much more support to help you, in fact there is a new group about to start in your area:
"Our new Glasgow group will be meeting in August! If you would like to come along please contact the COB Office (0121-702-0820)

Susannah Fraser
 "

So do ring them a.s.a.p.

Also please do keep posting and asking any questions, someon will be sure to have some advice for you.

Kind regards
Kate


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Erin

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Reply with quote  #137 
Thanks Kate for your reply and support. It helps a bit to know we're not alone. I will contact them - that's a great help thank you
Erin

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Reply with quote  #138 
Only started today but finding intermittent self catheterisation very painful - triggering my bladder spasms right in the middle of it - hardly any urine coming out and bladder not empty. I was using VaPro catheter and wasn't sure how far up to insert it - Nurse just said until urine flowed but I found mine flowed for a second then stopped so I put the catheter up further and nothing. Not sure if I can do this twice a day it's so painful I'm sure it's nothing compared to others' pain. Any advice/info on using intermittent catheters would be appreciated.
ModeratorKate

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Reply with quote  #139 
Hello Erin.
Oh dear bless you.

Do have a read of this Post.

Also may I suggest you re post, your question with a new heading I.E " Painful Self Catheterisation"
as this post in' meet and greet' may not be seen.

Again do contact COB Office, they really are so helpful.




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Erin

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Reply with quote  #140 
Thanks Kate,

I spoke to my urology nurse and she's going to try me on paediatric cathether size 8 and instillagel. I'm concerned if I can't get this to work I'll need to go for SNS but fingers crossed it'll work and be less painful.

I'm hoping to join COB soon as I think the support group could be beneficial for me - been feeling so low lately.

Cheers,
Erin
Sharon23x

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Reply with quote  #141 
Erin ,it happened to   me too ...i was called crazy by my doctor ,as she could not give me a correct diagnose .
handymandy19

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Reply with quote  #142 
Quote:
Originally Posted by claireg

Hi everyone,

 

I've just discovered this site after reading an article in a free Boots magazine, to my joy, its so nice to not feel alone and to be able to talk to people who understand so please forgive the length of this in advance!

 

I'm 29 and have had OAB my whole life as far as I can tell, along within recurrent cystitis.. for so long I just thought I was useless at holding on for the loo and wondered why no-one else had to go as often as me, or as suddenly. I had (and still do have) very low self esteem and feel very inadequate, dirty and reluctant to form any sort of long-term relationship.

 

During my late teens and early twenties I spent many an awkward evening jigging about in an embarrassing manner in a queue in a pub/club toilet..more often than not I wouldn't make it in time.Yes I do realise alcohol is a bad idea but hey, I was 18! I wasn't going to let something like a hundred toilet trips a night and damp knickers spoil a night out with my mates...nasty. At that time it seemed more acceptable to explain an every-twenty-minutes peeing frequency as a drug problem rather than a bladder problem-how ridiculous is that?!

 

 Anyway, I digress.. it was only after I spent a year away travelling (which was something of a challenge - long bus journeys in South America with limited toilet breaks etc!!) when I was 25 that I finally decided that maybe there was something not quite right and plucked up the courage to see my GP (male-hugely embarrassing) who diagnosed OAB and referred me to a urologist who did an ultrasound scan and couldn't see any abnormalities.

 

I was prescribed some medication which I didn't take - I'm a bit of a hippy and not a big fan of conventional medicine but now, 4 years on it's getting worse if anything and I'm almost ready to put my priniciples to one side just so I can live my life in dry underwear and without needing to constantly be within spitting distance of a toilet day and night.

 

So, sorry for banging on for so long. Can I ask a question please? Has anyone tried any alternative therapies - Traditional Chinese Medicine for example? I tried acupuncture but regular sessions are a bit out of my price range.

 

Thanks to anyone who takes the time to respond...it's really very much appreciated and just nice to talk y'know.

 

Claire xx


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handymandy19

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Reply with quote  #143 
Quote:
Originally Posted by claireg

Hi everyone,

 

I've just discovered this site after reading an article in a free Boots magazine, to my joy, its so nice to not feel alone and to be able to talk to people who understand so please forgive the length of this in advance!

 

I'm 29 and have had OAB my whole life as far as I can tell, along within recurrent cystitis.. for so long I just thought I was useless at holding on for the loo and wondered why no-one else had to go as often as me, or as suddenly. I had (and still do have) very low self esteem and feel very inadequate, dirty and reluctant to form any sort of long-term relationship.

 

During my late teens and early twenties I spent many an awkward evening jigging about in an embarrassing manner in a queue in a pub/club toilet..more often than not I wouldn't make it in time.Yes I do realise alcohol is a bad idea but hey, I was 18! I wasn't going to let something like a hundred toilet trips a night and damp knickers spoil a night out with my mates...nasty. At that time it seemed more acceptable to explain an every-twenty-minutes peeing frequency as a drug problem rather than a bladder problem-how ridiculous is that?!

 

 Anyway, I digress.. it was only after I spent a year away travelling (which was something of a challenge - long bus journeys in South America with limited toilet breaks etc!!) when I was 25 that I finally decided that maybe there was something not quite right and plucked up the courage to see my GP (male-hugely embarrassing) who diagnosed OAB and referred me to a urologist who did an ultrasound scan and couldn't see any abnormalities.

 

I was prescribed some medication which I didn't take - I'm a bit of a hippy and not a big fan of conventional medicine but now, 4 years on it's getting worse if anything and I'm almost ready to put my priniciples to one side just so I can live my life in dry underwear and without needing to constantly be within spitting distance of a toilet day and night.

 

So, sorry for banging on for so long. Can I ask a question please? Has anyone tried any alternative therapies - Traditional Chinese Medicine for example? I tried acupuncture but regular sessions are a bit out of my price range.

 

Thanks to anyone who takes the time to respond...it's really very much appreciated and just nice to talk y'know.

 

Claire xx


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handymandy19

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Posts: 6
Reply with quote  #144 
Hi there to all sufferers of OAB

Thank God At there is a portal for discussion and advice for this wretched career wrecking illness. Im 54,  and realised in November 2015, that my bladder was uncontrollable. Going to the loo at least 5 times a night was hard but equally so, so many trips during the day. It has ruined holidays and sometimes a flare can send me crackers.

Medication so far Urostemol, no effect, amnitripline, early days. Vesicare some effect in beginning but I moved on to Oxybutine. 

I have had a cystocopy, with the results that I have a tight urethra. Im unsure whether to try a combination of Betmiga and vesicare? Any thoughts.

Im also considering botox treatment too.

Im sure there are people worse in the world, but I wish my family would understand more how much this is affecting me. Im not great at taking tablets at all and often forget. But I do want to add to other threads on the issue of distraction of the mind which helps to ease the symptoms. When Im really busy, the symptoms ease greatly.

I do not experience pain but it is the volumne of trips to the loo that scares me.

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ModeratorKate

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Reply with quote  #145 
Hello handymandy 19
Welcome to the Forum, as you say you are not alone, we will always listen.

Reading through threads and messages on here you will find much to support you, also if you could join COB not only will you be sent a welcome pack which will include our quarterly magazine, you will have so much more help , support and advice.

Conventional or unconventional, we welcome everyone, and yes you will find sections on alternative and natural therapies.

Maybe rewrite your specific  maybe post it in a category, i.e OAB, etc, and hopefully someone will respond.

Kind regards
Kate


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GeorgiaSands

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Reply with quote  #146 
Hello, all:

I'm an American 34 yo woman who finds herself not quite believing that she has overactive bladder syndrome. 

My symptoms began in August 2014, although it's possible they started before then, and just weren't bad enough for me to really take note. However, I had an episode that started in August and quickly became a situation in which I had severe nocturia; I felt fine most of the time, until I went to bed, and then it was a nearly constant feeling, leading to me going to the toilet every fifteen to thirty minutes. MUCH more than twice a night. 

I also remember having just two hours or so of intense pain in my kidneys on one of these nights. But that is the only time that happened. It stands out clearly in my memory, however. 

My GP tested me three times for a UTI and yeast infection, to no avail. I was sent on to a urologist who gave me a cystoscopy; nothing of note found, other than I had a slightly smaller-than-average bladder (but I assume that's been the case my whole life.) He gave me a month's supply of oxybutynin. (aka Ditropan or Oxytrol) He also told me to do kegel exercises. At this point, I was needing to go every thirty minutes during the day as well, particularly when I went on walks. 

By the end of October, I was "back to normal". The dr. had recommended I only take the medicine for a month, then try without, as he didn't want me to become dependent upon it and thought the exercises would help. Honestly, I don't think the exercises helped much at all, but oh well. 

I've had some flare ups since then, but none nearly as bad as that first round. I have a job that makes it pretty easy for me to go to the bathroom as often as I need. I usually get up at least two times a night, but that's fine as I also have a job that allows me to sleep late if needed. (I work in the afternoons/evenings). 

But I have SO MANY QUESTIONS, questions my doctor doesn't seem able to or interested in answering. I was hoping I'd find some guidance here. I just can't swallow the idea that nobody knows why this is happening, and because of that, I find it hard to believe that there's not something else going on. 

A few of my questions, which I realize you may or may not be able to answer:
1) Is it normal for nocturia to be preceded by a bit of burning pain in your lower back - not quite a back ache, but a strange, inflammation-sort-of-pain? (All of my episodes are accompanied by this and usually preceded by this; sometimes I only have the back pain and not the nocturia.) 
2) Why did this happen to me, at the time it did? I don't smoke, I very rarely drink alcohol, I'm fairly active and especially so in the summer months; I've been in the habit of avoiding salty, processed foods for five or more years now. I do yoga, I exercise 4-5 times a week, and I've only improved my diet since then. Regardless:
3) ...Doesn't there HAVE to be a reason? Please tell me SOMEONE is interested in figuring this out, because my urologist surely doesn't seem to be. 
4) Has there been any research into spinal stress and issues and whether that might be triggering the sacral nerve? I see there's an electric therapy for the sacral nerve. Is there evidence that perhaps damage or inflammation around the sacral nerve is the cause or one of the causes of OAB?
5) Related - has anyone found chiropractic work to be helpful during flare ups? Because of the back pain that accompanies my flare ups, I'm considering trying chiropractic work. 
6) This is a bit personal, but has anyone found using a vibrator or dildo triggers the symptoms? I see sex can, for others. For me, sex rarely does, but the vibrator can. In fact, I somewhat suspect my first episode has a lot to do with a tidal wave of hormones and subsequent vibrator use... (sorry for the graphic picture, but what if it's important?)

I'm terrible at doing research. I mean, I try to find information on, say, Victorian fashion, and find instead information on primitive Indonesian dwellings. So I'd appreciate any guidance whatsoever on this matter!

Thanks, all!
-GSK




handymandy19

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Posts: 6
Reply with quote  #147 
Hi Georgia

Welcome also. The hardest part of oab surely has to be Nocturia, I currently go between 4_6 times a night, making me grumpy. Have you had an ultrasound on your kidneys?
I have oab but never any pain when i void, it does make life difficult when planning any trips, distraction helps and reduces the trips to the loo

Im sure the forum members will help you so have heart. At least we are not alone.


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Katrina17

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Reply with quote  #148 
Hi Everyone, I think that I may suffer from OAB but I am unsure. I have a constant unconscious little leak 24/7. Does anyone know if you can have OAB and have this symptom?
Moderatorsusan

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Posts: 932
Reply with quote  #149 
Hi Katrina

Best thing I would suggest is to call the BHUK hotline today. Each Wednesday there is a nurse in the office specialising in these type of issues. Have a chat with her. It could be due to overactive bladder but if you have weak pelvic floor muscles say after childbirth or have a vaginal or rectal prolapse, this too can also cause leakage issues. Sadly as we age our pelvic floors grow less stable and leaking can cause issues.

Do give the office a call this morning and ask to speak with her. She is a lovely lady and will have a good chat with you.
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