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Posts: 1
Reply with quote  #1 
I would really appreciate any advice you may be able to give me.

Throughout my mid/late teens (I am in my early twenties now) I suffered on/off with recurrent UTI's which usually would be treated within a few days with antibiotics. I had ultra scans and CT scans to try and determine what could be causing the frequency of the infections, but they all showed up fine.

When I had a fare up last August (2018) I assumed that it was just another UTI as the symptoms were identical to what I had experienced before. However, the sample came back clear and I was told that there was no infection present. This really confused me as I was convinced that the symptoms I had were caused by a UTI. My GP was unsure as to what was causing my issues so I was referred to a urologist who I saw in December 2018. The urologist diagnosed me with Painful Bladder Syndrome and I was referred for a cystoscopy as well as a  procedure to stretch my bladder, with the hope that it may relieve some of the pain I was experiencing, which was thought to be nerve pain (shortly after the appointment I was also prescribed Amitriptyline by a different GP for the suspected nerve pain - I was only on this for a few months as I had extremely bad side effects). 

By early 2019 I still had not received an appointment for my cystoscopy (to this day I still haven't received an appointment, even after contacting the hospital several times!), and I was really struggling to manage the pain from the constant 24/7 burning sensation I had been experiencing since August. I contacted Bladder Health UK hoping to receive some advice as I felt I was really at a dead end and wasn't getting anywhere while being on the waiting list. They advised that I may actually be suffering from a Chronic UTI, as opposed to PBS, as standard NHS sample testing isn't really that effective in picking up infections. I was then advised to contact a private clinic and have my sample sent for a broth culture at a private lab. I decided to do exactly this and went to see Mr A, a consultant specialist urologist who agreed with my belief that I most likely wasn't suffering from PBS as my symptoms didn't really line up with it (I don't suffer too much from urgency or frequency). He had my sample sent for private testing on his recommendation and the results came back showing 2 different types of infections - one was a common type of infection, and the other was slightly less common (Staphylococcus aureus). I was therefore diagnosed with a Chronic UTI. I was prescribed a 6 week course of Doxycycline alongside a two week course of Azithromycin.

Neither of these antibiotics improved my symptoms so I have since been prescribed a 6 week course of Co-Amoxiclav, which I have been taking for a week. The issue I am having is the side effects I am experiencing from this medication, including a severe headache as well as painful stomach cramps. I was wondering if anyone else has been on these antibiotics and if you can tell me how long the side effects lasted for you? Do they ease off after a few weeks or are they persistent? My problem is that I know I need to continue taking these tablets as they may help treat the UTI and relieve those symptoms, however the side effects really are quite unpleasant at the moment. 

In addition, if anyone has any tips in managing the burning pain associated with Chronic UTI's I would be extremely grateful. This has been a constant issue for me since August 2018 and it is really an everyday battle. 

Many thanks in advance.

Edited to remove name of specialist - forum rules do not allow the direct naming of specialists.

Posts: 1,164
Reply with quote  #2 
Whilst Mr A is away on holiday this week, I would contact him to advise of the issues you are experiencing - all antibiotics have side effects but your specialist needs to know what you are experiencing.  You are taking a good probiotic with your antibiotics I assume - this will help support the gut.  Also try taking the antibiotics with food rather than on an empty stomach - that can help. More info about probiotics here.

More information can be found here to help with the burning pain.

Unfortunately we cannot advise around controlled pain relief but many have found that Amitryptaline or Nortryptaline are of use - these are first generation antidpressants (no longer used) which at low dose 10mg or upwards have been found to be extremely helpful with nerve pain throughout the body not just in the bladder.  Your GP can prescribe these.   They should be taken at night and can make you initially feel very drowsy in the morning. 

Make sure vaginal swabs have also been done to check for ongoing thrush (and you don't need the discharge for there to be thrush), this too can cause the burning.

Sadly embedded UTIs can affect the nerves of the bladder and pelvic floor as the bacteria are embedded into the walls of the bladder and these causes an immune system stand off - the bladder signalling pain.  One other option is to retest with Mr A and see what else has popped out. Bacteria flux in and out of biofilms regularly and whilst one ab may have suppressed one bacteria, something else may not be so susceptible.  

You could also try an antihistamine which too can help calm the bladder and the increased mast cell activity which is a result of the infection - its all part of the standard response of the immune system to release mast cells to remove the infected cells but can cause increased burning and nerve pain. Ceterizine, Ranitadine and Loratadine can all be purchased over the counter and taken once a day.  They may make you feel sleepy so take at night.

Posts: 31
Reply with quote  #3 
I do sympathise as I too had a chronic UTI which took 3 months to shift. I took 3 courses Co-Amoxiclav and yes they make you feel lousy but they are a necessary evil. After finishing my last course I immediately started taking HIPREX which helps stop the UTI coming back. Give it try as it worked for me. Its available to order at Lloyd's pharmacy. Good luck
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