Interstitial cystitis

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I used to suffer with it in my teens and early 20s, it was hell!

I took a low dose of antibiotics over about 6 months and now I only get it once in a blue moon now.

I hope you can get it sorted x
 
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I was on x2 muscle relaxants per day and had a 6 week course of injections into my bladder to replace the bladder lining. Tbf I think it worked as I no longer have it! I have heard though that its psychological 🙈 my urologist told me mine was caused from my persistent UTIs eating the lining from my bladder causing it to be irratable. Are you under a urologist? There is treatment
 
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I have suffered with recurrent UTI's for years, for 2 years they were back to back and I had a cystoscopy and my urethra widened. It helped for a time but they came back again so now I just take 1 dose of an antibiotic as soon as I feel that pain or if engaging in sex. Haven't had one for over a year.
 
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Only suffered each time I have been pregnant. It is the worst pain so fully sympathise. No amount of Googled natural remedies or tips worked. Antibiotics and plenty of water, rest if you can. Definitely see your doctor, get referred to a urologist, as mentioned by previous poster. Hope you get some respite soon.
 
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You have my sympathy 😭 I have or should say had suffered up until Jan this year for around 18 months with uti. I have Ehlers danlos syndrome and it seems to be pretty common with EDS. My gp suggested taking optibac probiotics for woman intimate flora as she had heard good things about them. Unfortunately not on prescription but I found them on a site called stress no more and can honestly say they are worth every penny. Costs around £35 every 3 months but since taking them I’ve had no more uti and no antibiotics 👍🏻
 
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What are the symptoms and what’s different to cystitis? Thank you
Its basically the same symptoms as a bladder infection (which require anti biotics to cure) but there is no bacteria present so its hard to get a treated, you have to be referred to a urologist and try a lot of treatments to see what works. Mine was thankfully sorted through weekly injections into my bladder plus my bladder being blown up really big whilst I was asleep
 
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Look up Professor James Malone-Lee in London. He's got an NHS clinic as well as a private Harley Street clinic. He treats IC, which he says is an embedded urinary tract infection (hence symptoms of UTI but no visible bacteria on standard urine culture), with long term antibiotics and his success rate is over 80%.

Lots of info here: http://www.chronicutiinfo.com/
 
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I know this is a bit of a dormant thread, but I’m currently suffering with recurrent uti’s/cystitis and am under a urologist currently waiting for a kidney bladder scan! But I’m after some advice, for those who have been prescribed low dose antibiotics, were they prescribed by a GP? I’m trying to get my Drs to put me on this at the moment and I’ve had one tell me they can only be prescribed by a ‘specialist’ and being quite vague about it, I feel they’re trying to fob me off so would welcome any help or advice about this. Thank you! 😊
 
I know this is a bit of a dormant thread, but I’m currently suffering with recurrent uti’s/cystitis and am under a urologist currently waiting for a kidney bladder scan! But I’m after some advice, for those who have been prescribed low dose antibiotics, were they prescribed by a GP? I’m trying to get my Drs to put me on this at the moment and I’ve had one tell me they can only be prescribed by a ‘specialist’ and being quite vague about it, I feel they’re trying to fob me off so would welcome any help or advice about this. Thank you! 😊
I went privately in the end to get answers but the private GP prescribed them and loaded with my normal GP for me to get them from them if that makes sense?
 
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@FraggleRock please do not let your doctor fob you off. In my experience you have to become as persistent as the UTI in order to get anywhere :LOL:

This may explain your GP’s reluctance to prescribe the low dose antibiotics, you are not alone: https://www.theguardian.com/society...ions-could-be-linked-to-antibiotics-crackdown

It is well documented that UTIs are very poorly understood, as are many medical problems faced predominantly by women (migraine is another one). UTIs can count for a huge 9% of GP appointments so it is well worth it for the medical industry to take it more seriously at all levels.

I know this will sound a bit bonkers but my persistent UTIs reduced greatly when I stopped consuming chicken. It may very well have been a coincidence but there is growing evidence: https://www.nytimes.com/2019/07/13/health/urinary-infections-drug-resistant.html
 
I went privately in the end to get answers but the private GP prescribed them and loaded with my normal GP for me to get them from them if that makes sense?

That makes sense, thank you!!

@FraggleRock please do not let your doctor fob you off. In my experience you have to become as persistent as the UTI in order to get anywhere :LOL:

This may explain your GP’s reluctance to prescribe the low dose antibiotics, you are not alone: https://www.theguardian.com/society...ions-could-be-linked-to-antibiotics-crackdown

It is well documented that UTIs are very poorly understood, as are many medical problems faced predominantly by women (migraine is another one). UTIs can count for a huge 9% of GP appointments so it is well worth it for the medical industry to take it more seriously at all levels.

I know this will sound a bit bonkers but my persistent UTIs reduced greatly when I stopped consuming chicken. It may very well have been a coincidence but there is growing evidence: https://www.nytimes.com/2019/07/13/health/urinary-infections-drug-resistant.html

Thanks, I actually came across that article the other day, it makes a lot of sense! Haha, I’m definitely going to keep pestering them, I’m determined not to be fobbed off!! I will give the NY times article a read as well! I agree, UTI’s need to be looked into more, especially given the statistics in the guardian article!! Thank you!
 
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I was prescribed them by a urologist but that was only after I’d been seeing him for 6 months, had 2 severe UTI’s that he had tested for, had a cystoscopy and my urethra widened and they still came back.
I had to search for a good urologist and beg for my GP to refer me because they kept fobbing me off.
I had one GP tell me that UTI’s were part of being a woman 🙄
Since then, I’ve moved and had to fight to keep the prescription. I even got referred to the infectious diseases clinic in London for help with treatment of long term antibiotics but the doctor there told me to keep them if it’s what worked for me.
And it does work, pretty well. Soon as I feel any kind of tingling, burning or pressure in my bladder, I take one and 5-6 hours later all symptoms are gone. I then take one a days for a few days after and in over 2 years I’ve never suffered as much as I did for most of my life.
A friend does take some very good super strength cranberry tablets from Amazon that she said work very well too.
 
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