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Posts: 19
Reply with quote  #1 
Hi Everyone, 

as the title says i am really fed up now!  i have been suffering with urine infections since i was 17 (i am now nearing 40), usually i get antibiotics and they clear up, i have had good years and bad years with these i.e. 2015 was particularly bad but they always cleared up but 2016 was great just one that year (will get back to this in a mo), i have had a cystoscopy years ago as i was in constant pain and had finally seen a urologist, i thought i may have had IC but the cystoscopy came back with an infection at the back of my bladder which hadnt cleared, subsequently given nitrofurantoin and it cleared up.  ive always suffered with my bladder sometimes frequency sometimes not, not enough to get up in the night with as i trained myself not to do this as it was making it worse, if that makes sense.  anyway, the reason why i am fed up is that on 15th December i took some cold and flu tablets before bed as i was feeling unwell and within hours i was in agony, and had the usual signs of cystitis with pain, burning, constant need for a wee even though there was nothing to actually wee, so i knew i had some sort of infection.  I had some emergency antibiotics and made the mistake of taking these before giving a urine sample, stupid i know but this was the week before xmas and getting down to the GP for an appt was near high impossible.  BUT obviously this did not work and i managed to get an appointment with my dr who gave me Trimotheprim (which i must say is the most useless drug ever).  this did not work, i then put up with it for xmas as the frequency had gone and i was just left with awful pain.  unfortunately i am a bit of a trooper as they say and just push myself through it, anyway it came to a head on new years eve and i thought i would die of the pain so went to a local walk in clinic on New Years Day (great start to the year!) they did a dip test and confirmed that there was an infection from this and gave me co-amoxiclav this worked a treat!  Two days later the pain was gone, and i felt soo much better unfortunately it gave me really bad diarrhoea (but i persisted to take it as i was feeling great), at the end of the course i soon came to realise that i did not feel quite right although not unwell (wondering if the diarhoeaa gave a helping hand with new bacteria to invade me?!), eventually a week later i felt bad again, but this time JUST the abdominal/pelvic pain.  basically i have felt like crap since January with this pain, it just wont go away, no OTC painkillers get rid of it, weirdly when i have a period the pain goes away to be replaced by period pain, but then when that is finished its back!

i am at my wits end i went to see another urologist and had an ultrasound undertaken and that came back clear, as did the urine culture, i explained to him that i was still in pain and mentioned Prof ML, that i had read about on here, he dismissed this and refused to give me any ABs as my culture was clear, he asks me a few more questions like "do you think you have IC?" uh hello you are the consultant here!  i did say i think not as my cystoscopy (with the same kind of pain) came  back with an infection and mostly they are infections and clear up.  he then asked a few more questions and came to the conclusion that i have an overactive bladder gave me a diary form and a prescription for vesicare for a month!   as you can imagine, i came away and just thought WTF.  anyway the situation at the moment is i am still in this horrible pain/pressure/feeling of needing the loo when i know i dont!  i havent taken the vesicare as i dont think i have OAB.  i have managed to get an appt with Prof ML but not until May, just feeling a bit down really May is a long way off! My urine keeps coming back clear, i did ask the urologist if my culture is too low to be recognised as an infection but i may still have one, but he just dismissed that idea.  

i dropped a sample off last week as i went to see the GP again, she gave me some more nitrofurantoin (a weeks supply) and i did the sample before i started taking this lot of AB but i have just called up to see the result and they said the sample was contaminated!  and it hasnt worked to get rid of the pain.  i did wonder if it was gynaecological but i have had investigations for this and they always come back clear too. 

anyway, i am not dying, there are people worse off than i am but sometimes you just need to vent with people that understand the pain that your in, and i feel like i have just been left to get on with it!  

i hope you are all feeling ok at this time, and im sorry i have ranted! 

Posts: 1,837
Reply with quote  #2 
Hello Amanda
Welcome to our Forum and hope you will find much to assist you.
Do read through the Biofilm category, especially as you have appointment with the Prof.there is a post "your first visit to Prof" and much more.

You will see others searching for pain relief etc. incidentally as it is more prominent at your Period time and maybe premenopausal your hormones are absolutely haywire.
Please read this Thread as Moderator Susan discusses Pain help with maybe anti histamine

Please also consider joining BHUK and telephoning the advice line as they will have so much more to assist you and not onlt send you joining pack but have more info on BIOFILMS.

I do hope you will find some relief soon and You NEVER need to apologise, we will always listen and understand.So do keep posting.
Kind regards
(Incidentally I will delete your other post so as not to confuse.)


Posts: 51
Reply with quote  #3 
Hi Amanda - totally fed up with it all just about sums up how I feel[smile]!! Most of the samples I have sent off to NHS have come back clear or non-specific bacteria but with raised white blood cells and red blood cells. I am coming to the end of a week on Cefalexin but don't think it has cleared up the problem and then have to go back on nightly Nitrofurantoin and on and on the saga goes. I have used a private company for tests - they are much better than the NHS tests and have shown ecoli and other bacteria when NHS showed up nothing. If you are interested I can send you details on private message.

I am now thinking about whether to see the Prof - I have been referred back to local urology department but the wait will be long as I am not considered urgent case because cystoscopy, ultra sound and CT scan all came back completely normal. Other than that I am considering going to a herbalist (Chinese) or Ayurvedic (Indian) doctor. Have you tried that?

Posts: 19
Reply with quote  #4 
Moderator kate - thanks for the response i will have a read through the biofilm postings, i have signed up to the bhuk and sent the registration form back just waiting for a call back to pay! I wondered if maybe it was premenopausal as the pain does clear during my period but as I said it is then replaced with period pain instead, maybe i should get my hormones tested. Unfortunately it does come back immediately after and i can just feel my bladder if you know what I mean, it hurts to put pressure on it and i cant wear clothing that is too tight or things like bending over anything that puts pressure on my bladder, i feel like I am on the brink all the time.

Im hoping the professsor can help me, i had a listen to the interview on the radio, thank goodness for this site with all the information to try!

Posts: 19
Reply with quote  #5 
Suzyj - bless you i feel for you, its such a horrible thing to go through. I have not tried herbal medicine may look into that. Yes please can you pm the details for the testing clinic. Hope you get some answers soon unfortunately unless we are crying and screaming we are just left too it x

Verified BHUK Member
Posts: 50
Reply with quote  #6 
I have been treated by the Prof and have now been off antibiotics for over a month now.  You will be so relieved when you see him, at last somebody who listens to you and then you can start some treatment that will work for you.  It might be a long road, but you will get there.  I did!
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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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