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joencaitlinsmum

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Posts: 3
Reply with quote  #1 
Hi All

This is my first post here and really in need of some advice!

I believe I have suffered most of my life on and off with cystitis (certainly as my mum has confirmed I had it as a toddler) and up until recently its been under control with the odd treatment with antibiotics if it gets severe.

However since the beginning of December I have had the burning feeling constantly day and night, some days I am having to use the toilet more and others not so much, I am just coming to the end of my third lot of antibiotics and have only had about three days free from the pain. I also have a really heavy feeling down below (like something is there all the time). The doctor said that I don't have a prolapse so not sure if this symptom is related but there was protein, blood and white cells in my last lot of urine that was checked at the surgery but it hasn't shown anything conclusive back from testing at the hospital. I was told to make another appointment if this lot of antibiotics hasn't worked (appears not!) but they are making me feel sick and rubbish, I'm not really eating and now my sleeping is being affected. 

I have cut back on coffee and been drinking more water and also taking bicarb in water (which gives me headaches as well), tried cranberry juice and tablets nothing is working and I now cant concentrate on anything but the pain and discomfort.

Does anyone have any further ideas of what to try? Should I ask for more antibiotics would they give me more if the test wasn't conclusive?
Sophia

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Posts: 516
Reply with quote  #2 
Hi

So sorry that you are suffering.  I have been in an IC flare since before Xmas so know how rubbish it can make you feel.

Personally if these antibiotics do not work then I would not take any more - it is possible that its an underlying infection that hasnt been picked up by the hospital labs but taking one antibiotic after another is not going to do you any good and it clearly isn't addressing your issue.

It may be that the symptoms you have are not being caused by an infection but something else as your bladder is irritated and your gp should really refer you to an urologist to try to get to the bottom of what is going on.

Anti-biotics should only be used where there is a clear bacterial infection going on and they are the right meds to treat it - unfortunately gp's hand them out like smarties back to back and they can end up causing more problems.

I'm sure some of the lovely ladies on here who suffer with BC will have more advice but I would push for more diagnostic testing and stay off any more courses of abs until you get some sound proof that this is a UTI.

Wishing you better soon
Sophia
ModeratorKate

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Posts: 1,962
Reply with quote  #3 
Hello joencaitlinsmum
I am so sorry you are feeling poorly and as Sophia has mentioned, that if the antibiotics have not worked then it is possibly not going to work with a further course.

Do have a look at the COB website re IC..before you speak with your Doctor.

http://www.cobfoundation.org/interstitial-cystitispainful-bladder-syndrome.

Also consider joining COB( link below) as they will send you an information pack and also you can ask for one especially for your Doctor.

You could also Phone or e. mail the Office, 0121 702  0820
as they will have a load of information that may help you.

Please do keep posting and reading here on the Forum,and you will soon realise that you are not alone, and someone will always try and comfort you, as we are all different but do understand how isolated you feel, as there is no 'cure for all' which is why it is inavaluable to be able to ask as much as you like.

Do have a look at the Diet pages, as sometimes this can trigger a flare, also Bicarbonate of Soda is ok occasionally, but 'potassium citrate' from the Chemist is often preferred and some say better.

Hope this a little help.

Do keep posting.
Kind regards
Kate

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DawnCOB

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Posts: 4,496
Reply with quote  #4 
HI, 

Sorry to hear you have been having these symptoms since the beginning of December. 

Have you had any tests done at the hospital ie scans etc ? 

Have you recently gone through any hormone changes / new pill / menopause ? 

As Kate says there is a lot of information available to look through to help reduce your symptoms. 

Best wishes 

Dawn 
joencaitlinsmum

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Posts: 3
Reply with quote  #5 
Thank you to everyone for your replies. I haven't had any hormone changes that I'm aware of although I do have the Mirena coil that is due to be changed within the next couple of weeks but this is my third one and had no other problems before so doubt if that's related.

The first GP I saw who examined me for a prolapse has referred me for a pelvic scan but not heard anything and suspect that could be weeks before an appointment turns up. I am concerned about the heavy feeling I'm experiencing and would be interested to know if this is related to the burning I'm feeling all the time? I will look at the information on here for help with the symptoms as I cant go on like this [rolleyes]
holden

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Posts: 4
Reply with quote  #6 

Hi joencaitlinsmum. I suffer from recurrent infections too, which have always cleared up very quickly... that is until I had a bad infection at the end of October for which I tried 3 different antibiotics. Until today, unfortunately, the feeling of burning, bladder twinges and increased frequency have not gone. However, all my NHS cultures are coming back negative, so either I have embedded bacteria or testing has not been good enough. In any case, I looked at a possible connection with the mirena coil... and got it immediately removed in case it was doing some harm. I can't say it has made a difference to my symptoms, but for me the theoretical link was enough: mirena coil contains progestin and progestogens in general (but more so the synthetic ones such as progestin) that can make the mucosal protection of the bladder thinner. I know that mirena is supposed to release the progestin just to the local structures, but being so close to the bladder, I don't think that it's too far fetched to think it could be affecting things.

Hope your symptoms clear soon. Let us know how you get on!

jeananne

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Posts: 231
Reply with quote  #7 
Unfortunately, this how a lot of people end up with severe bladder problems.  Like you I had recurring cystitis since 18 years old and just kept taking the antibiotics that were prescribed.  In the end these did not work and after being on an unsuccessful course of the very strong ones, the hospital gave up on me. I now have to take 200mg of one every single day.  This has worked however but it has not stopped any of my symptoms of the OAB.  I now take a mixture of paracetamol and codeine just to stop the pain and allow me some respite from it.  Does this make me feel unwell some times? yes but it is the lesser of two evils.  I never fall off to sleep before the early hours because the feeling of needing the loo, never stops once I lay down.  Each time I wee, the pain gets worse so If I get up every two hours during the night, that means the next day is even worse.  We all do seem to have different symptoms however and have to find different ways of coping with it.  Good luck.
MollyB

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Posts: 187
Reply with quote  #8 
Hi,

I am the same when I lay down.  The feeling of needing the loo is horrendous.  Why? Some people say pain etc is much less when they lie down.  Wish is was that way.  The last strong dose of antibiotics...how long was it for and was it one AB?  I presume you know of the Drs who do layering of ABs etc.   Are you on any other meds for OAB, sleep etc?
Cheers
MollyB

jeananne

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Posts: 231
Reply with quote  #9 
I cannot make out if the pain of "wanting to pee" (because that's what it is to me) is worse in bed because you can't stop thinking of it or if its a "physical" thing and you bladder squeezes more in that position.  Doctors cannot give you any answers to these question. The last stronger antibiotic I was given was in 2010.  It was 'Cefalexin' and I had it for 7 days.  Since then I  have been taking  200mg Trimethoprim each day to keep cystitis at bay.  I don't like taking it daily but I  have enough pain with OAB without the pain of cystitis as well.  To show how puzzling this condition is I can tell you that last year while I was away in my caravan I actually had 4 days without any pain at all.  I only used the loo as any normal person would and after four days I was getting quite excited as you can imagine. On the fifth day I woke needing the loo and I was on it every ten minutes and the pain was back. My diet did not change and I have no explanation for it but I wish I knew what happened there. I was discharged from hospital and they said they could not treat me anymore except for pain killers because they did not know what it was causing the pain.  I am on my 7th year now I think.
MollyB

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Posts: 187
Reply with quote  #10 
HI,

So apart from pain killers what meds are you on for the OAB and cystitis pain?  The feeling is horrendous of wanting to pee...
MollyB
holden

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Posts: 4
Reply with quote  #11 
Hi Jeannane,

Ok, so some things have changed since I last wrote on this forum! I decided that my symptoms were due to an infection that had not cleared properly with the normal course of antibiotics (1 week nitrofurantoin 50mg four times daily) and went to see the London Prof. He is also convinced that I have a chronic infection and gave me full-dose antibiotics. Feeling miles better now, most of the urethral pain is gone, and the burning, pressure and twinges are 95% no longer there! Also, I was told that I had a high post-void residual volume of urine, and that I needed a urethral dilatation. London Prof told me to avoid it by all means, because he thinks it doesn't help and would most certainly make the inflammation worse. Happy I tried the antibiotics instead. I remember how desperate I was for answers as to why I still had symptoms for so long... it really seems that doctors are not aware of these difficult to treat hidden infections that don't show up on standard NHS testing.
lkemp

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Posts: 2
Reply with quote  #12 
Hi holden,

Glad you are feeling better now!

I have very similar sounding symptoms to you.

Could you please specify what full course of antibiotics you had?

Thanks
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