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Posts: 31
Reply with quote  #1 
I have had low level bladder symptoms for years (my urologist thinks bacterial, but now I'm beginning to wonder). I had a cystoscopy last week which showed a normal bladder. 

5 days later it started to hurt to pee- classic uti symptoms starting externally and travelling up into the bladder - sent urine off, came back +ve for pseudomonas, by which point my bladder was in spasm and I was in the worst pain I've ever had (worse than giving birth). Two days into the ciprofloxacin and some incredible relief but now I have the initial symptoms again (2 days later). I know cipro doesn't kill everything and I've had uti's which have been klebsiella, ecoli and enterococcus in the past, so I'm figuring this must be a bacteria that isn't killed by the cipro. 

I am terribly scared. I have a 3 month old baby. I am beating myself up about having the cystoscopy, and terrified that I have a new uti only a few days after the first. I'm scared I'm going to die and be unable to see my baby grow up. 

Please, has anyone experienced this - some hope please...



Posts: 118
Reply with quote  #2 
I have emailed you

Posts: 562
Reply with quote  #3 
Hello redsoxfa,
I truly feel for you. I have a young son  who has had  bladder, bowel problems for many years since adolescence.  Following a cystoscopy nearly 4 years ago, he was in appalling pain afterwards.  Despite being given antibiotics at the time of the procedure he was then given another lot of very aggressive antibiotics which did nothing. The process of cystoscopy and stretching the bladder with hydrodistension, actually makes the mast cells in the bladder wall degranulate and send out inflammatory chemicals which adds more pain.  He was also given a long course of ciprofloxacin which had a devastating effect on him, making the whole IC problem far, far worse and causing long-term problems with cipro.  It is a very dodgy antibiotic (well most of them are!) and it kills off many very important good bacteria in the body (all antibiotics kill indiscrimately the good bacteria and some good bacteria are particularly vital).  The whole cystoscopy procedure is very damaging and antibiotics, especially if you have had a lot already will just not work as the body has become resistent to anything probably by now.

Try not to panic. I know it is not easy to say that, but I have seen my son in despair and felt the same despair for him constantly. Try to build up the immune system and cut out the antibiotics as they will only work temporarily and then things come back with avengeance very quickly.  Get some good bacteria (probiotics) back in there and try foods which do not irritate the bladder and drink water only, preferably mineral water like Evian, Careg Spring.  You must feel very scared with a young baby too, but don't give up, the pain should eventually go from the cystoscopy.

When we rushed our son back to hospital a week or so after cystoscopy because of the pain, we were treated with disbelief as though the bladder does not mind this procedure. It does, very much so and most people that have the procedure are in agony afterwards - men, women and children so do not believe otherwise. The bladder is a very fragile tissue and does not recover as quickly as say a bowel investigation.
Good luck

Posts: 31
Reply with quote  #4 
Thanks for the advice but this is definitely another uti - I'm scared that a resistant bug is causing it. I need the antibiotics this time as I cannot function at all with the level of pain - worse than childbirth. I can't sleep at all and my body will not heal if I can't do that, plus I can't take care of my baby in so much pain. Painkillers like tramadol did not touch it; my bladder was in spasm. 

I hate taking unnecessary pills and would not be taking the cipro if it were not necessary. I take probiotics daily anyway. 

I am so scared. Has anyone else had a uti start whilst on antibiotics? 


Posts: 562
Reply with quote  #5 
Hi again redsoxfan,
It is not impossible for the body to react to antibiotics sometimes, to almost have an allergic response to them. My son has reacted to antibiotics in the past.  It is good that you are taking some probiotics whilst you are on the antibiotics.  Maybe the GP and consultant can give you a better pain killer, there is lyrica, gabapentin.  Tramadol did not help my son one bit either.

I think the problem with antibiotics is that strains of bacteria are becoming resistent by the minute to the current antibiotics and so they have to keep changing the antibiotics to keep up with them. They need to do some more thorough urine tests again to see if they can find something as an alternative.  

Do hope you can get some help and maybe get urgent appointment tomorrow with GP.


Posts: 308
Reply with quote  #6 
Please read my previous posts and you will see it happens to lots of us.
 I had my cysto/destention in Oct and was in AGONY until march.. still get flairs every 2 weeks lasting over a week. So get probably 5 good days a month.
My wee when cultured every 2 weeks comes back clear but shows protein when the docs test it. I was convinced until last week and after having a daily antibiotic and a 7 day course every other week for 8 months that it was uti. Even drs agreed. Protein can be caused by inflamation of the bladder.
As for pain... I have tried everything.. the hospital botched my procedure badly.
Im on:


Doxycycline 100mg daily

Diazepam  2 x 5mg at night ( Muscle relaxant - helps you to sleep and relaxes bladder!)

Zopiclone  (Knocks you out at night!!!) I buy this from abroad for £17 for a months supply!

Elmiron ... Have 5 bottles but havent started it yet)

Pregabalin (Good pain reliever but dr dont like giving it out as its expensive)

Dont give up.. I cry every day, I wasnt like this before the cystoscopy and dreaded distention.
Hassle your dr/consultant and if needed ask to be refered to a pain clinic.
Try prelief or bicarb of soda to make wee less acidic, hot water bottles, heat patches and think that some people are worse than you.. I know it doesnt seem like it though.
Be strong... i used to get up 20 times a night before going to dr and telling him i would have a breakdown if i didnt get some sleep,
Be strong... we will get through this xxxx

Posts: 31
Reply with quote  #7 
Thanks everyone. 

I don't know about whether the cystoscopy was done badly - but I was fine for 5 days afterwards, until I developed the infection (the infection was a result of the cysto I have no doubt), so I don't think the procedure itself caused too much physical trauma (the infection has done that though).  I didn't have a distension (thank god)

I have been in the depths of despair but my husband persuaded me to spend some time playing with my baby yesterday even though I'm in terrible pain and although it's not how I want to be a mother (in constant pain), I'm glad I did it. I've been crying a lot and I think she picks up on that. 

Please, any more stories about recovering from this would be appreciated. Sammie, it sounds as if you've had a terrible time and that the hospital treated you very poorly, but it does sound as if things are a bit better now - and that is encouraging for me. I do think bladders take a longer time to heal than other parts of the body. 

This experience has taught me a valuable lesson - be grateful for what you have. Prior to the cysto my symptoms were sometimes bad but I did have the occasional day or hour when I felt normal. I know it will be a long time before I feel this way again (i pray I do). I resented the loss of my previous fully healthy self, but I would give anything to go back. 

All I can do now is everything I can to make myself healthy and happy and to try and get over this - I really need and appreciate all your help and support. 

Posts: 24
Reply with quote  #8 

Hi Redsoxfan

Be very careful with Cipro... i had a UTI and was prescribed Cipro ...ended up in appalling agony from the side effects...had bladder spasms, shooting pains up my spine and legs etc...and if came back exactly as you said 2 days later...keep on them for 2 weeks,it did feel it was going towards end but i had started IC diet by then as well... came back 3 days later, took Doxycyline again good for 2 -3 days and back again.. had Cefalaxin...very severe burning pains on that..back to Cipro 2 days into, severe shooting pains again in spine..burning in baldder...back to Docycycline... 2 days good...then bang...back.... so came off everything, as iwas falling to pieces 1 week ago like you...and i am getting by on bicarbonate of soda in water, and the odd night with an anti-histimine..i feel a lot better, ithink i am someone who cannot take convention medicine its took aggressive for me.... you may be the same..... also i am starting a herbal/diet immune system boost with Deborah Grant as believe even if there is an infection present ( although no pos sample in my case) it is resisting every course now.. and the damage they are doing to my body is leaving it no chance to fight back... the bacteria is yours , just a bad one out of control, As sammie says the bicarb works a treat...and try a anti-histimine at night it may help? try yogurt instead of probiotics...they can irritate the bladder too much, especially if fructosaccharides in them? 

Good will get better...xx

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