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Registered: 1480931694 Posts: 2
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I have overactive bladder and IC/PBS. I had my 2nd botox in June. At my follow up appointment in September I was told I had some retention and should self catheterise twice a day. Almost straight away I had problems. I got a proteus infection and had antibiotics. That caused horrendous thrush. I then had another infection - klebsillia oxytoca. I felt so ill my GP sent me to hospital and they kept me in for 24 hours and gave me IV antibiotics. That result came back negative. I saw the consultant who said to stop antibiotics. I'm now on vesicare for frequency and am waiting for Parsons installations. I didn't get better and the next sample suggested bacterial infection but didn't say what so I was put on co-amoxiclav. I then seemed to get excrutiating pain every late/afternoon evening. The GP sent me to A and E last Friday but they sent me home with different antibiotics saying they couldn't help and the GP has to look after me. The GP has already said he doesn't know what to do. Every day I'm getting agonising pain every afternoon/evening. It only lessens if I drink nearly 3l of water and go to the loo every few minutes. I'm up every hour or two in the night. I'm exhausted. These acute symptoms have been going on for 3 months and I'm constantly at the GP. In tears sometimes. I've started on D-mannose today but it's not helped yet. I'm really stuck as to what to do and who can help. I can't afford to see anyone privately and am not sure this is a longstanding infection as I was fine until self catheterising (which my new consultant seems to be suggesting wasn't necessary anyway!) I don't know where to go for help. Any ideas? The problem doesn't seem to be going away.
__________________ Lynne Male
Registered: 1079366942 Posts: 1,131
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I am so desperately sorry to read this especially as you were advised to self catheterise believing it to be of help for the retention issue, something that can happen once botox treatments are administered. Unfortunately catheters do run a high risk of infection and you sadly have experienced this.
You urgently need some form of help to deal with what is either an untreated infection due to the catheters that is causing the pain or possible nerve issues due to the IC/PBS. Can the GP refer you onto a pelvic pain clinic in the city where you are based? They should at least be able to offer you this and possibly some provide medication assistance over the Christmas period. There are medications such as Amitryptaline or Nortryptaline that could help to take the edge off the pain and dial down the frequency and urgency you are experiencing along with the vesicare although there are newer medications on the market such as Betmiga for OAB. Its not a cure but may help. Its the untreated multiple infections I worry about and I wonder whether your GP would be prepared to refer you out of region to a chronic infection clinic based at a major NHS teaching hospital in London. There is a wait time of 11 weeks but it may be an answer and they are used to seeing patients who are self catheterising, have OAB, IC/PBS and other co-morbidities. The COB office can give you details.
Keep the D Mannose up but take it every 2 hours for the next 72 hours. It works on gram negative bacteria only so if you have been diagnosed with coliforms including e coli, Proteus and Klebsiella bacterium it will help. Keep drinking the fluids, and use bicarb 3 times a day. An ice pack between the legs will help and take a high strength probiotic to get the good bacteria back into your gut and system. The diet must be very bland as I'm sure you know. I'd see if you can contact your consultant again and explain you have had to go to A&E due to the chronic pain and frequency you are experiencing and whether they can organise an emergency appointment to see you and provide high dosage ab cover for a period of time especially with Christmas coming up. You have had proven infections in the past and cannot be left like this.
Thrush can also cause awful burning pain so make sure you are covered fully for this. You don't have to have the itch to have thrush if that makes sense. Again a good high dose probiotic along with some localised thrush treatment will help. If the thrush persists make sure your GP swabs you to identify the strain so it can be treated appropriately.
Registered: 1488369412 Posts: 1
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I had. Bladder Botox for OAB on 13 August 2016 still in retention 140mls (now nearly seven months gone passed ) I have constant UTIs with urosepsis when I had it done! I have taken copious antibiotics with no break all different ones was on a profolactic (preventative dose)last month then got an infection whilst on then ( Nitrofirantine) 4 a day whilst continue to self catheterise . It's a nighthmare ! Has there been anyone who has had permanent retention since the Botox of. Or when can I expect it to start wearing off? What will all these antibiotics do to my system I feel really sick and nauseous whilst taking these antibiotics ? By the way has anyone heard of Hiprex tablets for bladder infections?
Would desperately like to hear anyone's opinion !!
Registered: 1323861157 Posts: 1,902