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debzx

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Posts: 116
Reply with quote  #31 
Hi All,

I'm Debzx from wirral. Have had continual UTI's and bladder infections for must be around 8 months now, have had at least 40ish courses of Antibiotics thrown at me and none have cleared it up. I have been to hell and back emotionally and physically trying to juggle 4 kids and work ect ect. I have had IVP/Cystograms which havent shown much to be honest, they are thinking it could be a narrowing of the uerthal pipe so in 8 days time i am having a cystoscopy/urethal dilitation under a general using a rigid scope!I am scared stiff, petrified to be honest of the general and worried about the outcome. Also they now think i have gall bladder problems or a possible ulcer!! ( What next) they say the 2 are not related but my hubby is convinced that all these pills have not helped my overall immune system. been on Doxizosin also to relax the bladder. I have sunk into a bit of morbid d4epression am convincing myself that i have the big C and only months to live!! ( is this normal with worry??, am normally so bubbly and love live but the past months have changed me and i ache so much i am sick of pain!!! sick of sleep deprivation with having to go to the loo all thorught the night and wehen i do get there i dribble so bloody annoying and painful. My Gp surgery must think "her she comes " each time i visit them which to be honest is every week of late!! its become a bit of a joke they ring me to say they need more urine to test as the last lot was infected!!!tell me something i didnt know LOl. Thanks for klistening guys any advise would be appreciated.
Laz82

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Posts: 17
Reply with quote  #32 
Hi my name is Lara i live reading and got diagnosed with IC last year when i was 20.

Have mostly bad days with occasionally good ones.

Being diagnosed on april 1st isnt a good way to start but that was the day i was diagnosed and i was hoping it was an april fools joke. Unfortunately it wasnt.
jennie

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Posts: 14
Reply with quote  #33 
Hi I'm Jennie and i'm 21 I have been a sufferer of IC for about 4 years but doctors only informed me of this about 18 months ago. I am happily married and have been for nearly a year now. My husband is very supportive and is always there when needed which is a great help.

I hope to speak to you all soon and will look forward to getting to know you and hopefully we can all help each other.

Love Jen
xx
Helen

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Posts: 34
Reply with quote  #34 
Hi,
I'm Helen and am 22 years old. I live inbetween Manchester with my parents, and Paris with my boyfriend. I had repeated UTI's and kidney infections when I was very young, but was OK after the age of about 8 until a year and a half ago. I suffered 3 bad attacks of an illness called Rieter's syndrome (or Reactive arthritis - joint pains, cystitis, high fever that leaves you hospitalised and not very well) which doctors think was a response to a UTI as each attack started with v severe cystitis. Since then I have been suffering from attacks of severe burning pain and frequency, especially at night when it completely prevents me from sleeping some nights. I have been treated with dioxycycline (long-term antibiotic), but have not recieved any other treatments. I am looking forward to giving and recieving advice from this list, which looks really friendly and informed. Thanks, Helen x
muriel

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Posts: 8
Reply with quote  #35 
Hi, I'm Muriel and live in Dorset, Uk. I'm 46, married for 28 years and have 2 rapidly growing teenagers! At the moment I'm off sick from work due to severe neck probs and a trapped nerve but now I'm wondering if I have Fibro! My usual work is as a community care worker looking after older people. (I think at the moment some of them are healthier than me). I haven't been diagnosed with IC yet but have had bladder probs for a couple of years now, such as frequency, spasms, bladder pain and sometimes blood in my urine. The urine tests usually come back clear! Anyway my GP has now referred me to the urologist and I'm booked in for a cystoscopy, scan and kidney x-rays. At the moment I'm taking Amytriptiline to help me sleep at night due to shoulder pain which has been a great help.
I've rambled on a bit but its so nice to find somewhere with friendly people talking about problems I thought were all in my mind!
Stressinc

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Posts: 1
Reply with quote  #36 
Hi everyone,

I'm a 27 yr old female suffering from stress incontinence after childbirth a few years back and recently have been getting recurring uti's which my gp says will need to be taken under control soon as I have only one kidney and I can't afford for it to be infected (had one kidney infection last year).

The gp said I should ask for the tvt procedure, I have a very weak and thin urethra also, a specialist I talked to before didn't want to try it as he said I was too young and it's normally done with older women. But my gp says I cannot afford to keep getting so many infections. Im not sure if I suffer from internal cystitis but I do have a lot of the symptoms.

Will be returning to a specialist in the next few weeks.

..I also have a border collie

CarolineF

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Posts: 337
Reply with quote  #37 
Hi

I am 34 years old, married and have two children aged 5 and 3. We also have a Jack Russell who is nearly 2 who rules our lives!

I have had IC for 3 years. Following a traumatic birth, I was unable to wee for nearly 6 months. Whilst I was catheterised, my IC symptoms started. After the usual months and months of antbiotics doing nothing, I had 2 cystocopies and a biopsy which confirmed IC. It took 10 months to diagnose.

My symptoms are pain, frequency, occasional urgency and night time waking (big sleep problems). I now take Cimetidine, Aloe Vera and jangle with vitimin and mineral supplements as I follow the IC diet fairly strictly. This all really helps. I find that my symptoms are worse around my cycle, before and after.

My husband has been really supportive over the years, but this disease is taking its toll on him too. Our children are too young to understand, but I don't know what I would do without them as they take my mind off the pain.

Best wishes to all fellow sufferers - we are a very strong bunch of people!

Caroline F
mandy

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Posts: 3
Reply with quote  #38 
Hi eveyone
My name is Mandy I am 41, Married With two boys aged 13 and 11. I live in Stansted(near the airport)
I have suffered with recurrent UTI's since I was 4 years old
They always cleared up with Antibiotics.Then 7years ago I develped one that didn't go away(it lasted 3 months). I had a cytoscopy and was told it showed scarring and inflamation. I was given a long course of antibiotics and within two weeks of that I was feling better. The uro wanted to do a biopsy however and six months later I had this done. I found the whole thing very distressing and it triggered of another attack which lasted over four months the uro didn't seem to think I had IC but prescribed Taggemet which i took for 8 weeks but found no improvement
I went to see another uro in Cambridge and he seemed to think I did have IC but said he would like to do a biopsy himself. When the appointment came through five months later I was feeling fine and decided to leave well alone.
I was OK for the next six years and then I had another UTI
that seemed to respond to the antibiotics but then flared up again. I have since had two urine checks and they have both come back negetive, but still 6 weeks later the symtoms continue. I am waiting to go back to the uro and also to see a cystitis councilor. I will keep you posted how I get on. My GP has given me Ami' and told me to try up to 40 mgs at night I have only been taking it for 2 days, Can anyone tell me how much they are taking and how long it takes to work?
Also I always seem to have a creepy crawley senation in my tummy right up to the top of my ribs. does anyone else have this?

regards Mandy
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Ria

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Posts: 2
Reply with quote  #39 
Hi I'm Ria I'm 23 have gorgeous husband and two beautiful children of four and two.
I have suffered with what doctors have thought to be uti's for about ten years and have been on antibiotics almost continuously during that time.Has been frustrating as most samples come back from lab clear.
Had cystoscopy and urethral dialatation last year to no effect.
Now have a new urologist- he has been fantastic,the first person to mention any thing about IC!he suggested I try this site. I now also await badder stretch.
I won't let this get me down but its hard. I can't deny it has had a big affect on our marriage.Unfortunately intercourse and alcohol are main trigger's for me!- Its great to know you're all out there. Ria xxxxx
joelle

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Posts: 30
Reply with quote  #40 
hi im a 23year old mum of 1 from north yorkshire.iv been diognosed with ic for a year but have been suffering for about 6years now.im finding it increasingly difficult to cope with. if any one can help please let me no. thanx. joelle x
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j.hargreaves
cazjones

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Posts: 7
Reply with quote  #41 
Quote:
Originally Posted by Ria
Hi I'm Ria I'm 23 have gorgeous husband and two beautiful children of four and two.
I have suffered with what doctors have thought to be uti's for about ten years and have been on antibiotics almost continuously during that time.Has been frustrating as most samples come back from lab clear.
Had cystoscopy and urethral dialatation last year to no effect.
Now have a new urologist- he has been fantastic,the first person to mention any thing about IC!he suggested I try this site. I now also await badder stretch.
I won't let this get me down but its hard. I can't deny it has had a big affect on our marriage.Unfortunately intercourse and alcohol are main trigger's for me!- Its great to know you're all out there. Ria xxxxx

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c.jones
wilson

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Posts: 2
Reply with quote  #42 
After 4 years of recurring bacterial vaginosis and urinary tract infections I was recently (2 months ago) diagnosed with IC. I have never had pelvic pain but have experienced urinary frequency and severe vaginal discomfort (severe burning and itching like a bacterial infection). Currently, I am taking Elmiron and an Estrogen cream. I have had no positive results from these medications and would like to hear from others with IC suffering the same conditions.
wilson

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Posts: 2
Reply with quote  #43 
After 4 years of recurring bacterial vaginosis and urinary tract infections I was recently (2 months ago) diagnosed with IC. I have never had pelvic pain but have experienced urinary frequency and severe vaginal discomfort (severe burning and itching like a bacterial infection). Currently, I am taking Elmiron and an Estrogen cream. I have had no positive results from these medications and would like to hear from others with IC suffering the same conditions.
cazjones

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Posts: 7
Reply with quote  #44 
i too have had discharge since being diagnosed with IC I have found that by reducing all the yeast based things from my diet and using tea tree oil in the bath this combination has reduced the symptons,i.e. itching etc. gud luck. cazjones x
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c.jones
Howareweall

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Posts: 25
Reply with quote  #45 
Hi,

I am Tracey aged 35, I was diagnosed with IC in December 2001. It came as a complete shock to me because I had always thought I had a very weak bladder which I learned to live with by not drinking - yes, sounds ridiculous but every time I drank I had to go to the loo every 10 minutes, it was a nightmare. I started having heparin installations in February 2002 but due to work commitments have had to change that recently to DMSO, which I find really painful and so am looking for another treatment maybe cystistat. I get urgency and have to get up approx 4-6 times a night, my frequency has improved tremendously since starting treatment. I can now go approx 1 hour maybe sometimes longer between toilet visits. I have my husband Rick and 4 boys who are very supportive and understanding when I am having a flare and go to bed with my water bottle and start taking a whole host of things to try and calm it down, they know i don't mean to be miserable but am just in pain. This site has been a life line to me, everybody has been so helpful and we all understand how each other is feeling because we have been there, from the highs to the lows and it makes a difference to know you are speaking to people and getting advice from people who really do know what you are going through.

I hope we all find a treatment that helps us live with this debilitating condition, keep smiling everyone

Best Wishes Trace xx
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