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donna

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Posts: 2
Reply with quote  #16 
hello

my name is donna. I have has recurrent symptoms of cystitus for 4 years and am still awaiting that miracle day when someone tells me what causes the pain!


MissChampers

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Posts: 1
Reply with quote  #17 

Hi, My name's Michelle, i'm 33 yrs old with 2 children and i've suffered with Bacterial cystitis since I was 16. I've had an attack at least once a year for the past 17 years, although I did go 18 months without one until last week. I had a particularly bad attack about 4 years ago where the infection spread to my kidneys and I nearly had to be hospitalised and spent 3 weeks off work. I've never been refered to a urologist but I was sent for a kidney scan which came back normal. The doctor doesn't seem to know why I keep getting attacks.  I do all the things i'm supposed to with regards to wiping from front to back, drinking lots of fluids etc but nothing seems to make any difference. The thing that does my head in the most is when it wakes me up in the middle of the night and it's so painful I can't go back to bed so i'm drained the next day. I usually find if i'm on holiday or away for the weekend it's seems to 'come and get me' then ruin my fun, so now I find myself getting a prescription from the doctor just in case. I honestly think i'll probably have this now for the rest of my life now and although i've got no choice but to live with it, it's so flaming annoying.

Olga

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Posts: 117
Reply with quote  #18 
HI there,
I'm Olga. I'm 30 years old and I am still not 100% sure of what my diagnosis is.- My uro thinks it is likely I have IC with attacks of BC but if this is the case I think my IC must be very mild compared to a lot of people on the IC forum.
My chronic symptoms sound more like urethral syndrome to me.-
My syptoms started over a year ago after a very bad attack of what I assume was BC and my bladder has never been the same since.- My main chronic symptom is burning in the urethra.- The onset tends to be when I delay eating, under stress and sometimes an hour or so after eating.

 Lucklily, this disappears quite quickly after drinking lots of water.  When this burning hasn't gone away within a couple of hours I realise I am onto the full blown BC thing and I feel awful for days until I finish the A/B's.

I wish I had known about this message board at the beginning when I was at my wits end. I have found the collective knowledge on this board very impressive and am grateful for the spirit of mutual support and sharing of ideas on this board.
 Like most people here, I am determined to get to the bottom of this stubborn disease.

Martha

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Posts: 1
Reply with quote  #19 
Hello everyone,
I have been reading these boards for a few days and thought what the hell, I'll go ahead and introduce myself. Gotta feeling I've got something in common with you all!
I am a mother of four, and currently have no interests or hobbies due to being in so much pain all the time. I have had cystitis for about sixteen months now, feels like it's bacterial but msu's are always negative. I have had uro investigations and been offered urethral dilatation, and also seen a gyn and been offered a laparoscopy. I turned them both down last year as everything settled down for a few months. This current flare has been on for about two months now, so am going through the process again, seeing the uro next month. I'm feeling quite 'fluey' at the moment, and having spasms around my waist and up my back, there is a 'knot' above my pubic bone in my bladder and the pelvic floor doesn't feel right at all. My legs are killing me, and there is also some stabbing in my right hip. I just didn't think it was possible to feel this ill in the absence of any infection! I'm just taking paracetamol and nurofen to control the pain until I get a diagnosis.
    I do feel better on antibiotics, but am intolerant to all of them now so dread having to take them, I itch all over even with an antihistamine.
   Sorry to go on but I feel so helpless, can't stop crying. Hope I'll be able to post some good news soon.
judy

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Posts: 8
Reply with quote  #20 

hi my name is judy  i have 3 grown up children 2 grandchildren i am just learning about the internet so if i go wrong you will understand !!   i would like to know if anyone has had a TVT for stress incontinence i had one done last december it was unsuccesful i have just had a cystoscopy and a ureathal stretch i am suffering with incontinence more now than i was before i have to self catheterise at night because my bladder isnt empting properly so i am getting infections all the time i dont know what to do next i am getting desparate my daughter is getting married in june so i would have liked to been dry for this event .

judy

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Posts: 8
Reply with quote  #21 

 after having a ureathal stretch and a cystscopy recenty i have now got a bad urine infection i have had 2 lots of antibiotics and i am in a lot of pain any one suggets anything  

trish

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Posts: 3
Reply with quote  #22 

Hi i'm Trish and i am 32 years old

i have been suffering from urethritis for the past 3 years. i have undergone 2 cystoscopy's and several urine cultures and they were all negative. one urologist also suggested that the burning and stinging was due to a small polyp at the tip of the urethra and said not to worry about it. i have been trying to concieve for the past 3 years too. have had 1 ectopic-IUI and 1 miscarriage at 6 weeks-IVF and 1 unsucessful IVF cycle. i knew there was something not quite right with the burning so went to a 4th urologyst. he did several tests and it is ureaplasma. my husband was tested for it and he was negative. the dr put me on a course of erythromycin for 10 days. the symtoms reduced but did not go away. we did another test and the ureapalsma was postive. i am currently on vibramycin 100mg for 14 days. has anyone had ureaplasma which has not been cured at all? if they have been cured, has anyone gotten pregnant and had a normal pregnancy? i am very keen on knowing this and losing all hopes of having our own child .

CarolineC

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Posts: 2
Reply with quote  #23 

Does anyone else have that constant 'awareness' feeling of down there between attacks? I have got to the point when I am thinking is it going to flare up within the next hour or so despite there being no actual pain or irritation between attacks?

Although angry at the time wasted at GPs and the repetitive advice I caved in in the end and came up with the following which has helped (no attack since April and very unusual!).

 

I

With regards sex, I wonder how my two children managed to make it into the world my husband and I had so little of it. He didn't want to make me ill and without the physical side of life rows flared up over the slightest thing.

CarolineC

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Posts: 2
Reply with quote  #24 

...as I was saying before my message got whipped away from me suddenly! I have found the following has helped :showering thoroughly before sex (both me and him) and being very aware of touching at the front before the back and NEVER returning to risk contamination. We occasionally have a* sex and funnily enough I have never had the attack afterwards if he is careful (then I have another shower while he makes the tea) The same cannot be said of vaginal intercourse!

I am also forcing myself to have a drink every hour or so. I now have three cups of tea before I go on any journey so that I will have to shortly go to the toilet even if it means stopping the car or using a train toilet. I am also following my grandmothers advice of washing after the toilet and drying thoroughly and I now carry a little bottle of water, a small hand towel and talcum powder with me when I am out and about. It has got me wondering about the natural sweat that could build up at the back and end up round the front (perhaps when prehistoric woman didn't wear clothes this would have dried up in the air?), the only reason I can come up with for getting it when I wasn't having sex or having a period.

I have also started using tampons throughout my period with a little bit of folded tissue to catch the leaks rather than a sweaty plastic covered sanitary pad and haven't had the other 'monthly' attacks.

I have been free since April although I have yet to try out 'normal' intercourse. It's all a bit of a bind but I don't care if it works. I only wish the doctor had given me specific tips rather than the 'try to keep clean' nonsense which left me feeling down. It seems to be more than just keeping clean. If I get another attack now I will seriously consider leaving my family and becoming a nudist nun somewhere hot near the sea like Namibia.

susie_grove

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Posts: 2
Reply with quote  #25 

Hi My names Susie im 22 and from Bournemouth, Dorset!!!!

 

Firstly im so glad I found this website its like a comfort blanket now I cant live without it!!!!

 

I first suffered from cystitus when I was 16 due to s*x
I was put on the normal does of antibiotics but it kept rearing its ugly head again and again!!! The worst point came when I actually had to sleep on the toilet with my head against the wall I was that exhausted and desperate, but as ususal test came back from the doctors negative!!!!! have had all the usual Sti checks etc etc and there all clear. I've now decided to go tee-total as alcohol seems to agrevate the prolem even more, altough giving up s*x is outta the ques i want kids one day!!!! Im also finally seeing a consultant in Dec after 5 long miserable years.

 

Im also really worried about loosing my job (I work in topshop )as ive had 4 days sick off in the past 2 months and there getting annoyed, can they sack me???????!! can I quit and claim disability???????? if ne 1 knows please let me know.

 

Bigs hugs to everyone

 

Susie

 

Treacletart

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Posts: 1
Reply with quote  #26 

Hello my name is Janine and i'm 26 years of age and live in Ipswich.

 

I have suffered from Cystitus for about 10 years. In the last 8 months I seem to suffer from it about every month. As always I go the chemist and buy a relief product and drink loads of water and cranberry juice but every time I have had to return to the doctors to get antibotics and the relief product never works.

 

After getting my dose of antibotics I always then get Thrush, well I thought it was thrush. I am currently at home with a alergoic reaction to the antibotics (TRIMETHOPRIM) which I have always been presribed for cystitus.

 

I wanted to know if anyone else has taken this mediaction for cystitus and has had side affects.

 

I am so fed up of the reoccurance of Cystitus. The last time I went to see the doctor I really tried to get as much information out of him as I could about why I seemed to keep getting it. His excuse was about the womans bladder tube being shorter than a mans and that during intercourse it can become infected. But I've heard this all before. I religously go the toilet once i've has intercourse and am so parnoid about getting cystitus again that I am constantly drinking water.

 

The doctor was unable to give me anymore advice apart from that some woman do experience this alot!!!! Well that great help. I'm so fed up of having to take days off work as the thought of not having a toilet right next to me is terrifying.

 

Please, please has anyome got any advice for me?

 

A much fed up Janine x



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Reply with quote  #27 
Hi

I hope you get lots of replies and all the help you need.

First, is your Dr testing your urine and are they finding bacteria?  If not, insist it is tested.  if no bacteria show up, ask for a retest.  It could be that you have become resistant to that antibiotic and need something else- there are plenty of  others. 

Also- if this is happening every month, is it linked to anything?  If not, you have to consider if you have IC and not BC - if you aren't getting a positive bacteria result, then it is possible- in which case you should ask for a referral ot a urologist.

In the meantime, keep clean, avoid tight trousers and nylon knickers- keep to pure cotton only- and avoid any bubble baths, oils etc .

I am sure other people will give you plenty more tips.

Hope you feel better soon.

Glynis

DawnCOB

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Posts: 4,496
Reply with quote  #28 
Quote:
Originally Posted by Treacletart

Hello my name is Janine and i'm 26 years of age and live in Ipswich.

 

I have suffered from Cystitus for about 10 years. In the last 8 months I seem to suffer from it about every month. As always I go the chemist and buy a relief product and drink loads of water and cranberry juice but every time I have had to return to the doctors to get antibotics and the relief product never works.

 

After getting my dose of antibotics I always then get Thrush, well I thought it was thrush. I am currently at home with a alergoic reaction to the antibotics (TRIMETHOPRIM) which I have always been presribed for cystitus.

 

I wanted to know if anyone else has taken this mediaction for cystitus and has had side affects.

 

I am so fed up of the reoccurance of Cystitus. The last time I went to see the doctor I really tried to get as much information out of him as I could about why I seemed to keep getting it. His excuse was about the womans bladder tube being shorter than a mans and that during intercourse it can become infected. But I've heard this all before. I religously go the toilet once i've has intercourse and am so parnoid about getting cystitus again that I am constantly drinking water.

 

The doctor was unable to give me anymore advice apart from that some woman do experience this alot!!!! Well that great help. I'm so fed up of having to take days off work as the thought of not having a toilet right next to me is terrifying.

 

Please, please has anyome got any advice for me?

 

A much fed up Janine x

 

Hello Janine,

 

Welcome to the board

 

I can see Glynis has offered you some good advice in this section. I have reposted your message (Welcome Janine) further down the board so others will see it and hopefully respond.

 

best wishes

Dawn

Pattie

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Posts: 1
Reply with quote  #29 
Hi I am Pattie 62yrs old and have suffered from the age of 34 starting afterI had had a hysterectomy. At around the age of 56 I started to take HRT and after a while realised I had gone a long time without an attack of Cystitis,I mentioned this to my doctor and he said it was a good side effect of taking hrt, I stopped taking hrt around two years ago and guess what ? I have had a number of attacks since and am currently suffering, not bad enough enough to go to docs, over the counter medicine gallons of water and cranberries, just when you think it is subsiding it is there again, I also find a hot bath and a hot water bottle helps before going to bed. Pattie
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ehb102

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Posts: 7
Reply with quote  #30 

Quote:
Originally Posted by DawnCOB
This is a Meet and Greet pinned section.

Please introduce yourself and let us know who you are. 

Hello. I'm Liz. I live in the UK and come from near Stony Straford (waves to people at the charity).

 

I've had an antibiotic resistant e.Coli infection since November 2003. I manage it with D-mannose - I have a habit that would be an addiction if I got any fun out of taking it. I live in fear that it will stop working or that I won't be able to afford it. So long as I have a packet I can forget I'm infected. Apart from the paranoia about having enough that is, and the worry about being able to take it often enough.

 

I'm very glad to find this forum. I didn't realise how worn down I was until I read some of the posts. I can't quite get rid of my infection. I won't bore you with the antibiotic list. My GP is nice but - well, he's a GP. More antibiotics! is what he seems to think. I'm frightened that he'll make me take the really strong ones with so many side effects and I'll be worse off than I am. I had one antibiotic that worked - once. It didn't work the following week and my GP didn't know how to handle it.

 

Liz

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