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Parka

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Posts: 3
Reply with quote  #76 
Hello

What a great site.

My name is Alison. I'm 41 and have had cystitis off and on since I was a child. I've had long periods where I've not suffered at all, but have also had some terrible periods during which I've seen numerous consultants, had various scans, had cystocopies. My last trip to the consultants resulted in them identifying the fact that I have a very large bladder that doesn't always empty. The recommendation is for daily self-catheterisation, which I did for a while but now find very uncomfortable and have given up on.

My problems with this got worse after my son was born in 2006 - I've more or less constantly been on antibiotics ever since then.

Like so many others, I'm desperate to find an alternative to the antibiotic merry go round. My GP is very sympathetic but I suspect is too eager just to give me another course of pills. I've tried d-mannose but my infections don't tend to respond (my understanding is that d-mannose only really works on e-coli infections).

Thanks for listening.



Beth1976

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Posts: 1
Reply with quote  #77 
Hi. I'm Liz, I'm 31, I live in Birmingham, I've suffered from cystitis since I was 14 and I'm currently in the bathroom now, which is where I spend my life when I'm having an attack. I'm really glad I've found this site because at least now i know that I'm not alone and that other people find comfort in their bathrooms. I find that taking my mind of it helps, so I take a book or a magazine with me, or even the laptop other wise I sit here feeling sorry for myself and I think that makes it worse.

When I'm having an attack, I sometimes wish I could just srcub out my uretha with a bottle brush to scrape all those pesky bacteria away, but I know I can't. I find that people who have never had it don't understand how awful it can be.

Please somebody find a cure!

Well,see, introducing myself to you guys has made me feel better.

Oh and my tip for a bad attack is to fill a bath with warm water and just lie in it till you feel better.
See you soon

Liz
kate18

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Posts: 1
Reply with quote  #78 

hi im kate and im 18.  i have been suffering from bacterial cystitis for about a year.  i have had no luck with doctors even when i was passing blood and couldn't walk with the pain. i have just moved to portugal for a job and am lucky have antibiotics for the latest out break i don't want to taking them all the time(last summer alone i had 6 different types of antibiotics). If anyone can sugest any nateral methods other than canberry would be great. I also read on one page that coffee causes problem does anyone else find this?

DawnCOB

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Posts: 4,496
Reply with quote  #79 
Quote:
Originally Posted by kate18

hi im kate and im 18.  i have been suffering from bacterial cystitis for about a year.  i have had no luck with doctors even when i was passing blood and couldn't walk with the pain. i have just moved to portugal for a job and am lucky have antibiotics for the latest out break i don't want to taking them all the time(last summer alone i had 6 different types of antibiotics). If anyone can sugest any nateral methods other than canberry would be great. I also read on one page that coffee causes problem does anyone else find this?


Hi Kate ,

Welcome to the forum.

I have copied your message onto the main area so others can answer here
http://www.websitetoolbox.com/tool/post/cobf/vpost?id=2430922&pid=23245397#post23245397

best wishes

Dawn

lancaster

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Posts: 300
Reply with quote  #80 

After three weeks of antibiotics I am left with a very irritable bladder and sore urethra, something I never had after a bout of cystitis over 35 years of having them.  One doctor has given me a vaginal cream to replace estrogen (I am 57) as this could help with the soreness, and another doctor has given me detrusitol slow release tablets (they actually give these for urine incontinence - though I don't have this) in the hope it helps with the irritable bladder.  My bladder feels burning, and irritated and I am aware of it all the time.  Has anyone had this course of treatment at all, I would be pleased to hear from you.

Gem

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Posts: 3
Reply with quote  #81 
Hi everyone!

My name is Gemma and I have been suffering with cystitis for just over 2 years. I had my first infection in October 2003, and have not been right ever since.

I have been repeatedly fobbed off by doctors with cheap antibiotics that only damped the infections down, so they returned a few months later. I've had about 3 short courses of Trimethoprim, and was also put on a low daily dose for a few months, as recommended by a specialist. However, I stopped taking it as I felt it was not the answer, and that my body was getting too used to it.

My last infection was in February 2007, and so far (touch wood!) I have not had another one. I think the reason for this is that I finally got to see a doctor who had a brain! He told me that the Trimethoprim was not strong enough and gave me Cefelexin, which must have got rid of it completely, I hope!

As a result of these repeated infections though, I am now left with an irritable bladder that's become a real nuisance to live with. 



__________________
Gemma x
marta

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Posts: 1
Reply with quote  #82 
HI Rose,

I am now 22 and I had a operation with my kidney when I was 13. I have had a few infections preceeding this operation, which made my doctors suspicious of having some other related problems. They found an inborn damage on my kidney and I had to be operated. I am wondering whether your doctors did the same and you had yours kidneys checked.

Good luck with your treatment!!!

take care xxx

Marta
Quote:
Originally Posted by Millie
Hi Rosie

You sound like a very well educated young lady!

I'm sorry to hear your problems started so young. It's good that you are being very proactive and getting things looked at. I believe it's quite unusual to experience repeated cystitis at such a young age - there may be a physical cause such as a 'kinked' urethra. Hopefully the doctors will get you sorted out ASAP. I have a permanent infection and live on antibiotics. The last urine test I had done showed up clear - but then I had been on antibiotics!! From chatting to other sufferers I think it's fairly safe to say that bacterial cystitis can be caused in some people by a tiny, undetectable amount of bacteria - we just have highly sensitive bladders!!

Don't worry about the cystoscopy - I had that and a urethral stretch done under GA 4 years ago. I won't lie and say it was pain free (it may have been the stretch and not the cystoscopy that caused my discomfort) but it was quite manageable and passed quite quickly. I would recommend a course of antibiotics afterwards though - I wasn't given any and so got an infection within a couple of days!!

Hope you get sorted out quickly! At least on this site you'll find a lot of helpful people who understand exactly what you are going through - unlike those often unsupportive GPs!!

Take care
Millie
x
lancaster

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Posts: 300
Reply with quote  #83 

Has anyone heard of urethral syndrome?  Helpful tip about having antibiotics after your tests.  I have had five lots of antibiotics over the past 5 weeks but am left with pain after weeing which spreads up into my bladder and lasts for about 10 minutes, then dies down to a dull ache.  Mary

DawnCOB

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Posts: 4,496
Reply with quote  #84 
Quote:
Originally Posted by lancaster

Has anyone heard of urethral syndrome?  Helpful tip about having antibiotics after your tests.  I have had five lots of antibiotics over the past 5 weeks but am left with pain after weeing which spreads up into my bladder and lasts for about 10 minutes, then dies down to a dull ache.  Mary


Hi Lancaster , Welcome to the board.

I have post your message here on the main forum . http://www.websitetoolbox.com/tool/post/cobf/vpost?id=2471116&pid=23660705#post23660705

best wishes

Dawn
jlegge01

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Posts: 1
Reply with quote  #85 
Quote:
Originally Posted by DawnCOB
This is a Meet and Greet pinned section.

Please introduce yourself and let us know who you are.

Hello,

Im Dawn and 35 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.

I have been a member of COB for 10 years, 7 years as a local co-ordinator and 3 years as board moderator.

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

Dawn.
sharonm

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Posts: 2
Reply with quote  #86 
Hi im sharon 48 years old

I have found this site very very intresting. I have had bladder probs for 26 years now due to givin birth to my daughter. It left me with a narrowing of the uretha and scaring, i had pain on weeing and a slow flow then the pain after havin a wee was really bad for about 10 mins. some days were worse than others. a few times i went in to retention for hours that pain is unbearable did'nt no what to do with my self as no one can get a cathatere in me as my urethea is so narrow, had 6 bladder streches they helped for a short time but never lasted for long. Well for the last 3 years i have had a super pubic cathater after giong in to complet retention had to have it done as an emergence the dr in the hospital had to come down on the ward to do it as the theaters were all full and i was climbing the walls in pain had'nt had a wee for 12 hours thought i was going to burst. well i've been told i will have the spc for the rest of my life. I was quite happy with it for 2 and a half years, apart from the odd infection it made my life normal again. Well the last 6 months have been a nightmear, i've been on every anti i think there is the only one that seems to work is cipro but as soon as i stop taking itn the infection comes back.  A m waiting to go back to cons as i can not put up with the pain any longer. after reading lots of the post on here my symptons sound the same as a lot of people on here. Im now wondering if i have cystitis, don't no if you can get it with a spc but will ask my gp. I never relised you could get so many probs with cystitis you people with it really do have a bad time. Is there any one on here with a spc? Oh and one more thing i get the dreaded thrush dose this course a lot of pain to cos when i get it my bladder seems a lot worse.
Samantha

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Posts: 6
Reply with quote  #87 
Hey Everyone,

My name is Samantha and I have suffered from Cystitis for about 9 years (I'm now 22yrs) but have had it continuously for the last year. Having finished Chemotherapy I believe it hasn't helped my urinary tract considering is clears you of any immunity. It is really strange I have symptoms of Cystitis but most my urine samples show no indication of infection. So after awhile of taking antibiotics that don't seem to shift the problem, my GP put me through to a urologist. From there it has been the same circle, really ridiculously long waiting times for appointments and a cystoscopy (which I have to wait 6 weeks for results) I'm kinda gathering that it is still a puzzle. I have a really understanding partner which keeps me positive but at times I'm so low and really depressed. I haven't had the guts to go back to work as I seem to have so many attacks everyday.

Would be really nice to hear from similar cases,
xSamx

Rebecca

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Posts: 1
Reply with quote  #88 

Hello everyone, my name is Rebecca. And after months of reading everyone’s posts I thought it was about time I joined up.

I really hope this will be a bit of a support network for me.

I am 20 years old and am a chronic sufferer of UTI's, I am at my wits end and don't know what to do any more.

I have Crohns disease and feel my UTI's may have been affected by being on steroids and immuno suppressants (still on the immuno suppressants). I have been suffering for over 2 and half years, I have been put on antibiotics, which do not work for over 9 months!!! I finally changed doctors and found out I am only responsive to Nitrofuration and Trimethoprin (sorry on spelling), however I have been on these for so long they are not as effective as they used to be.

I have been referred to an urologist and they put a camera in me to look at my bladder, he stretched my urethra but apart from that everything was normal!

I felt positive it would cure my infections but I got another attack the next day!

Since then I have been taking cranberry, and I thought it worked, I went for a month without an infection. I usually get them once a week or once a fortnight. But got another infection a month ago and since then they haven't really gone! Its so depressing it makes me so miserable.

I know that sex really aggravates my infections and feel it is often the cause; this affects my relationship with my boyfriend, as I am too scared to have sex, luckily he understands and support me, but I always worry that he will get sick of it soon.

People don’t understand how hard it is for people like us, its such an emotional drain to deal with the constant worry that anything will give you an infection; I hope we can all help each other in times we need it.

It’s so nice to know that other people are suffering like me with UTI's.

__________________
Talking is always the answer
jellybean

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Posts: 3
Reply with quote  #89 
Hi Everyone, my name is Helen and I'm 24.

I've been suffering with recurrent cystitis for the past 9 months, having had 7 episodes in that time. before that I had had about 3 or 4 in the previous 6 years... but no big problem. 

I'm really starting to get down about my recurrent problems, up until my most recent episode all urine tests have shown blood and leucocytes but no bacterial growth... which is really annoying as I never no if i've taken the right abx!

the episode i'm in now is really frustrating me... one mon i had symptoms but no positive urine dip for leucocytes.... took fluconazole for thrush.... went away but then 3 days later symptoms back again.... urine dip positive... so had 3 days trimethoprim... than on following monday symptoms back and negative urine dip! now on ciprofloxacin for partially treated infection... felt better after 2 days but now the symptoms are back and I haven't finished the course yet! urine dip is negative so have taken fluconazole again today for thrush so hoping I will feel better again in a day or so!

The even more frustrating  thing is that I'm actually a junior Dr myself and working on a urology ward at the moment!  doesn't mean i understand things any more easily.... my GP wanted to refer me to urology but it just means me seeing my boss so i just went to ask him what to do next anyway... he just said try low dose trimethoprim prophylaxis for 2 months for now. 

I was so upset to have to go on long term abx..... made me realise that everyday at work i add medications on to peoples charts and never really think about it....

I have so much respect for all you guys who are dealing with worse cases than me... just feel like crying all the time.
ally85

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Posts: 1
Reply with quote  #90 
Hi - I have been suffering with BC since i was 17 now 23.  I have been off work since march of this year as i had a really bad attack and then i developed a dizzyness condition because i was so run down.  The dizzyness isn't going and 2  weeks ago i had another infection which doesn't seem to budge.  I am going to a specialist next week to c a urologist so hopefully i can get some answers.

while i was at uni the doc and nurses just kept saying "oh your just unlucky", "try cranberry juice", "wash bf and after" etc usual stuff.  they do tests in the doctors they say there are proteins and blood, they send it off to the lab and then the result is "normal" what does normal mean here?

anywayI feel like everyone at work thinks i am lying because i am young and that i should just get on with it, they are a good bunch really but its just getting to the stage where all i do is cry and curl up in bed.  I feel for my bf, he is understanding but what 23 yr old guy wants a gf who now hates sex because she knows its gonna make her ill.

i did have some luck for a while taking something called ursa uvi and didn't have any attacks for 5 months. so i would give it a go if you haven't tried it. best 5 months yet.

good luck to you all x


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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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