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DawnCOB

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Posts: 4,496
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This is an introduction section, please introduce yourself. If you have questions/general comments please post these on the main board. Thankyou.

For further information on bladder conditions and to receive a COB information pack email your name and address to info@cobfoundation.org

There are over 90 pages of meet and greet , to view the last page click here
http://cobf.websitetoolbox.com/post?id=74509&trail=90

Hello,

Im Dawn and 42 years old. I have had bladder problems since the age of 12. Diagnosed with IC at 18, and several other diagnosis through the years OAB + Bacterial Cystitis. I have found diet, urethral/bladder stretches to be helpful in controlling my symptoms. There are many other treatments now available.

I have been a member of COB for 16 years, 14 years as a local co-ordinator and 11 years as board moderator.

Thankyou for using this board and sharing your information and experiences, this really does make a difference.

Updated Jan 2011



 

Sorrell

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Posts: 50
Reply with quote  #2 
Dear Dawn
I have suffered fairly mildly from IC for 5years. I control the symptoms with diet and cimetdine.But although i have no problems with using the toilet, i do suffer from severe pelvic cramps that feel like i have broken glass inside me. This is usually in the middle of the night. Painkillers dont help at all and i usually end up laying in silence with a hot water bottle. Do any other people suffer from just these cramps. I feel like i am making it up as people dont seem to understand how painful these are. They are becoming more frequent and today i have had pain all day.
Many thanks

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Helen E Watts
DawnCOB

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Posts: 4,496
Reply with quote  #3 
Quote:
Originally Posted by Sorrell
Dear Dawn
I have suffered fairly mildly from IC for 5years. I control the symptoms with diet and cimetdine.But although i have no problems with using the toilet, i do suffer from severe pelvic cramps that feel like i have broken glass inside me. This is usually in the middle of the night. Painkillers dont help at all and i usually end up laying in silence with a hot water bottle. Do any other people suffer from just these cramps. I feel like i am making it up as people dont seem to understand how painful these are. They are becoming more frequent and today i have had pain all day.
Many thanks


Hello Sorrell ,

Welcome to the board. You have posted in the OAB(Over active Bladder Board. I will put you post into the IC board. I have heard of a person mention to me about these type of cramps during the night and sometimes during the day. It was a gentleman member, he said when he got the bladder cramps it was so bad he couldnt move.

Have you thought about trying Amitriptyline?

Dawn
Merlyn

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Posts: 2
Reply with quote  #4 
Hi everyone.

I'm Lynne, age 49 (big 5 - 0 in 4 weeks!) and have just been diagnosed with an overactive bladder and severe bladder spasms. I've been suffering in silence for about a year, but finally went to see my doctor after a very embarrassing episode. My doctor and gynaecologist have been extremely supportive - as has being able to find message boards like this one.

I think you start to believe that you are the only person who has this sort of problem, and it's somehow your own fault. I've suffered with what i believed was cystitis on and off for most of my adult life, taking it as part of being female, but there comes a point when enough is enough.

I can't describe the relief in having had a diagnosis, and knowing that there is something that can be done. I have been prescribed Detrusitol and told to change my diet completely - NO CAFFEINE!! For someone who's life revolves around strong coffee, red wine and chocolate ; ) this was a complete body blow. Add to that the fact that I spend a lot of time in France - you can well imagine my feelings.
I've received advice from various wonderful people on another message board - not least Dawn, who directed me here.

I've decided to look on the bright side and class my caffeine-free month as a detox with added extra side-effects - hopefully a bit of weight loss (my son is getting married at the end of the year) as I've put on so much weight through being too embarrassed to exercise.

I finally feel like I can take charge again and be me, not a bladder with a weight attached!

Thanks to evryone, and keep smiling!

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Lynne
RoseW

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Posts: 2
Reply with quote  #5 
Hello. My name is RoseW. I visited this site a while ago and have returned following surgery. To cut a long story very short, 3 years ago I was diagnosed as having renal TB - probably active for 3 years! - by which time my affected kidney has virtually shut down and my bladder was hypersensitive and reacted to spices/salt/anything too sweet/ too much liquid and bananas! Prior to diagnosis I had a horrendous time with bladder spasms (as I now know they were), extreme pain, frequency every 5 minutes 24/7, fatigue etc. My frequency was caused by overfilling bladder it eventually collapsed and I presented as an emergency and I was asked if I had been in pain!!!!! All the signs were there apparently if they had been read correctly - pus cells +++++ in the urine being just one of them. January this year I had the kidney removed and a caecocystoplasty (bladder augmentation). Revisiting the site because I gained a lot from my previous visits and thought I might be able to offer something back on occasion. Overactive bladder has lessened considerably but it is early days and having occasional bowel problems now presumably because of bowel op.


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Hi my name is Annie.  I am 36 years old.  I live in Middlesex with my partner who is very understanding of my condition.

I have suffered from OAB for over 5 years now.  I have had previous cystoscopy and urethral dilation, which was successful for a short time. 

I used to have UTI's 3 to 4 times a year and after one particularly bad one, my bladder didn't seem to return to it's normal functioning. 

In the past year I have tried Acupuncture (which helps with the pain) Cimetidine, Quercertin and now am on Detrusitol 4mg and Amitriptyline 10mg which seem to be helping.  Recently I had a flare up after medical suggestion to try the combined contraceptive pill to balance out my hormones.  I tried 2 different types but they made matters worse.  I have since stopped the combined contraceptive pill. 

I am awaiting another cystoscopy and bladder dilation which I hope will help.  I will let you know how it went after 14th February.

Bye for now.





AnnieMc

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Posts: 98
Reply with quote  #7 
Hi my name is Annie.  I am 36 years old.  I live in Middlesex with my partner who is very understanding of my condition.

I have suffered from OAB for over 5 years now.  I have had previous cystoscopy and urethral dilation, which was successful for a short time. 

I used to have UTI's 3 to 4 times a year and after one particularly bad one, my bladder didn't seem to return to it's normal functioning. 

In the past year I have tried Acupuncture (which helps with the pain) Cimetidine, Quercertin and now am on Detrusitol 4mg and Amitriptyline 10mg which seem to be helping.  Recently I had a flare up after medical suggestion to try the combined contraceptive pill to balance out my hormones.  I tried 2 different types but they made matters worse.  I have since stopped the combined contraceptive pill. 

I am awaiting another cystoscopy and bladder dilation which I hope will help.  I will let you know how it went after 14th February.

Bye for now.





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Annie.
angieg

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Posts: 13
Reply with quote  #8 

hi my name is angela and i have suffered for 11 years, with an oab,since my first son was born.it has gradually got worse,and i pass water about 7 times a night.i have only just stratred getting treatment, and have been on medication ,but it made me drowsy and sick.i came off that, and have had a pad test,and are waiting to have a urodynamic test on monday.i think i will cancel, as i am scared ,and do not think it will be much good as i donot suffer with incontinince.i feel like i am the only one with this problem,and donot like to bother the doctors.i am always tired through lack of sleep.i feel like i will just have to live with it all my life.does anyone else feel the same.


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a good
hoppy

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Posts: 26
Reply with quote  #9 

Hi Im a bit scared to mention my real name just yet to be honest - I know I should.

 

I found out about this site from the daily mail magazine and have finally realised that I am not the only one.

 

I am not sure what I have but have experienced bladder problems for about 10 years that has affected me.

 

I have been referred to a urologist twice but never actually understood what is wrong.  Sometimes I just have the Ive got to go now feeling, sometimes I have to wait knowing I need to go which then results in a horrible cramping spasming feeling.  When this happens it is always worse for ages after.  Sometimes I get really worried and leak esp if Im in a queue, whereas in a car I can control it.  The worst and most horrible thing is that occasionally I wet the bed, this is what led me to really notice it was becoming a problem 10 years ago and I did this again last night, thankfully managing to disguise it when my husband woke up.  He cant ever know.......

 

I have had a urodynamic test twice but I was ok both times.  The first time the nurse packed me off and told me not to be silly, I was 22 and cried and went.  The second time the doctor said there was nothing he could do as I also get IBS.

 

After last night I am thinking of asking my GP for some tablets again.  I have tried oxybutinin and detrusitol before but they didnt seem to do much.

 

Its helpful knowing you are not the only one but Id love to be normal.

amy

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Posts: 3
Reply with quote  #10 

 

Hi there, My name is Amy and I'm 27, and finally had enough when my friends started taking bets on how long it would be until i need the toilet again!

 

I have just been diagnosed with OAB after 2 years of being fobbed off by my GP.  Have been on antibiotics for 18 months - on and off with no improvement of symptoms.

 

Finally got a urodynamics test 3 weeks ago, and was confirmed with having a severe OAB - up 4 and 5 times a night, sometimes more. 

 

Looking for some further treatment now, have been prescribed some tablets - detrusitol, but they have stopped me waking during the night, but am still getting stomach cramps during the day, even without drinking anything!

 

Am looking into to physio, but could do with some info on what to do for the future, as I only have 2 months supply of these tablets.

 

any info will be greatly received.

jbjrules

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Posts: 12
Reply with quote  #11 

Hi,

     My name is Mandy.I am 34 years old. Have just been diagnosed with interstitial cystitis/overactive bladder about 1 year ago. Am at the end of my tether with the pain. At present am just taking anti - inflammatories and drinking loads of water. Have attended my urologist but unfortunately he seems more concerned in doing a paper on interstitial cystitis than giving me any advice and help and therefore I have discharged myself as an outpatient. My GP has prescribed me anticholinergics, which slow things down in the bladder department. Am willing to try alternative remedies and have been told about Mullein Leaf and Slippery Elm. At present I need to get a partial hysterectomy out of the way so do not want to be taking anything just now despite the fact I am having a flare up and a bad one at that. I feel I have been left to deal with it on my own, Nhs letting me down. My urologist only offered me self-catheterization for the rest of my life and I declined. Main reason for discharging myself as an outpatient.

I live in Glasgow, Scotland and if it was not for the worldwide web, I would feel as if I was on a deserted island with this condition as noone seems to know what I am going through.

 

Kind Regards

Mandy

mochafrap

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Posts: 7
Reply with quote  #12 

Hi.  My name is Jonelyne.  I am 34 years old.  I am currently on Vesicare 10mg a day, prosed 2 pills three times a day, prolief before meals, starting elmiron tommorrow, on a low acid diet and doing kegel exercises regularly.

 

I had interstim surgery over 4 times in the years past.  It works 100% for me, but after a few weeks the wires move in my body and I need surgery again to reposition the implant.  I can not have anymore operations.  My body is just to small and the implant will no longer be an option for me.

 

I am scare of what this will all do to my marriage.  My husband married me when I was using the implant which worked 100%, there was nothing wrong with the implant.  Now I am in pain, constantly on medications, our sex life doesn't exist anymore and I am scared I am going to loose his love.

 

I am holding on to church and prayer right now.  And praying God will help me find medications to work.  I am also scared that since the prosed causes dryness and blue urine, I do not want to cause burning or pain if I have intercourse with my husband. 

 

Can someone give me suggestions or advice?  I feel so alone right now.

 

Thanks and God bless.

DawnCOB

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Posts: 4,496
Reply with quote  #13 
Quote:
Originally Posted by mochafrap

Hi.  My name is Jonelyne.  I am 34 years old.  I am currently on Vesicare 10mg a day, prosed 2 pills three times a day, prolief before meals, starting elmiron tommorrow, on a low acid diet and doing kegel exercises regularly.

 

I had interstim surgery over 4 times in the years past.  It works 100% for me, but after a few weeks the wires move in my body and I need surgery again to reposition the implant.  I can not have anymore operations.  My body is just to small and the implant will no longer be an option for me.

 

I am scare of what this will all do to my marriage.  My husband married me when I was using the implant which worked 100%, there was nothing wrong with the implant.  Now I am in pain, constantly on medications, our sex life doesn't exist anymore and I am scared I am going to loose his love.

 

I am holding on to church and prayer right now.  And praying God will help me find medications to work.  I am also scared that since the prosed causes dryness and blue urine, I do not want to cause burning or pain if I have intercourse with my husband. 

 

Can someone give me suggestions or advice?  I feel so alone right now.

 

Thanks and God bless.

 

Hi Jonelyne,

 

Welcome to the board. 

 

Sorry to hear the treatments so far havent worked effectively. Hopefully Elmiron will work, it can take a while.

 

The COB boards are UK based and we have different treatments available. You may find it helpful to visit the USA messageboards also. best wishes Dawn

 

Interstitial Cystitis Association ICA (National)
110 North Washington Street, Suite 340
Rockville, MD 20850, USA
tel: 1-301-610.5300
fax: 1-301-610.5308
http://www.ichelp.org
icamail@ichelp.org

Interstitial Cystitis Network ICN (National)
*Publishing Company dedicated to patient education & Support
4983 Sonoma Highway, Suite L
Santa Rosa, CA 95409, USA
tel: 1-707-538.9442
fax: 1-707-538.9444
http://www.ic-network.com
jill@ic-network.com

 

pink

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Posts: 45
Reply with quote  #14 

Hi my name is Jill and I live in kent.

I have suffered with IC and PBS for over 20 yrs and was diagnosed 11 yrs ago.Had been weeing bucket loads with pain.

I have had loads of treatments and minor ops to sort out this painful condition.You name I have tried it, including injections in my back to ease of the pain.

It started when I had a bout of cystitis, the bladder problems just got worse.

As time went on my GP sent me to Dover for some tests, nothing concluded.

I was later reffered to UCLH in london who have finally concluded that I have non-specific chronic cystitis and painful bladder syndrome, and also pelvic pain syndrome.

And now I have irratable bowel syndrome too.I can't win.

The bladder is swollen, inflamed and hurts bad.And I have incontinence with it too. not nice!! I am in agony all the time and have to take several different medications to try and control the pain.

Nothing is working so I am having my bladder removed in 9 weeks time.

I am so greatful that you are all here to talk to and thankful  that I am not the only one with this condition.I know what you are all going through and understand everything you talk about.

I too have a wonderful husband who is suffering with me, bless him.

He understands fully what I am going through and has supported me 100% throughout.I had this condition when he asked me to marry him, and was at my worse on my wedding day.

But I got through the day with my families support and help.

Although our personal relationship has dwindelled a lot latley.

To be honest I never thought I would ever look forward to major surgery.

I will be glad when it's alll over and I can get back to normal again.

take care all of you.

I am here if any of you want to talk or email me.

xxx

 

 

missjay

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Posts: 1
Reply with quote  #15 

Hi everyone I'm jay 26 from Lincolnshre area and recently got diagnosed with an over active bladder. I've had M.E for nearly 6 yrs and beleive its connected as being neurological and just getting worse from then!!

 

I had the usual uncomfortable teests at first the nurse that did the urodynmaics test thought it was a strictured urethra. After all the test and seeing the doctor he said it was OAB but might need the catheta in 15, or even 50 yrs!!!

 

I got back from a trip to Paris to see Mdonna in concert etc on monday and as it was a coach trip it was rather annoying going to the loo on the coach! I'll sit down and think got that out the way they 2 mins later desperate! At one point I held it in for so long as was embarissed to go again!! It was annoying as if you arrive somewhere you need the loo then when your walking around your thinking where it the loo grrr!!

 

The doc said he didn't want to give me medication at first as possible side effetcand best ti try and hold in when going as it were!! I'm going back in January to discuss if I would need it or not!! I would be a tad reluctant as alot of the side effects are bascially simialr to symptoms I already suffer due to the M.E..the M.E is more improtant to me to keep as well as possible!! I'm going to try nad do a tad mroe exercise to help muscles etc see whta could help!!

 

take care everyone

 

jayx

 

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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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