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JacT

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Reply with quote  #1 
This site has become my go-to place for advice lately. Thank you to the moderators who have really helped with excellent information on days when it all feels hopeless.
A year ago I was diagnosed with a tumour on one of my kidneys and 4 days later I developed what I thought was bladder pain. Dipstick said no infection several times, but just before my surgery the hospital called to say I had a uti, and prescribed antibiotics for 3 days. On the day of surgery the dipstick was clear apparently and they operated. Two weeks later the bladder pain was back and like many  of us, I've had the tests to rule out other gynae problems. Got referred to a uro-gynae on the NHS eventually who said he'd need to do a biopsy, but in the meantime I've been having pelvic floor physio with a fantastic woman who thought a biopsy was a baaad idea! A week before the biopsy I panicked and managed to get an appointment with the very lovely Prof VK as I wanted another opinion. He diagnosed mast cell activation disorder and found 5 different bacteria in my urine sample! Im nearly finished the cipro course of 2 weeks and he wants me to wait 48hrs and have another urine test before deciding what to next. 
Aaargh, this is so hard....I'm panicking that being off the ABs will mean an increase in bugs and more pain! At the moment I'm on cipro, ranitidine, des-loratadine and amitriptylene. Hope my remaining kidney can cope with all this[frown] I've been following the low histamine diet for at least 5 months now, on the advice of my physio....my goodness its restrictive!
The pain has been been flaring big time on the ABs.....anyone else on this sort of pathway with Prof VK? 
Didn't have the biopsy in the end as apparently they cant see properly with active infection?
Does anyone know what information a biopsy would add, if the Prof can see on ultrasound that my bladder lining is inflamed?


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JacT
Moderatorsusan

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Reply with quote  #2 
Oh gosh you really have been through the wars haven’t you with all of this. Post op were you given any antibiotics?. I suspect it’s likely that the infection had never cleared before you were operated on and a combo of a short course of abs pre op, the introduction of bacteria into the bladder during surgery and post op trauma set up a raging infection. Thank goodness your physio suggested no further surgery and you got to a specialist like Prof VK who can help you with the infection and the mc problems.

Prof K is a lovely man if somewhat overstretched because he is the go to guy in the UK in terms of infections and mast cell issues. He is actively involved in research into the issues around the activation of mast cells in the bladder and the causes behind this and how to resolve the symptoms.

Someone like VK may do a biopsy mainly because it will enable him to get a full picture of the mast cells in each bladder wall cell and also look for pockets of intracellular infection, that is infection within the cells of the BW. He uses a specialist lab for this rather that a uro gynae who may do a biopsy to confirm a diagnosis of interstitial cystitis by looking at the inflammation on the bladder wall and areas of bleeding but without the detailed analysis that someone like VK can offer.

Mast cells are seen in the bladder biopsies taken from patients with chronic cystitis. Mast cell secretion play a role in the host immune response to bacterial infection. Mast cells secrete a number of mediators, including histamine and this antagonises the nerve endings in your bladder as part of the inflammatory response causing the pain you feel.

More info here

http://www.chronicutiinfo.com/general-topics/histamine-and-the-bladder/

I should add that he will prescribe antibiotics for longer than two weeks if he feels it is necessary. In your case with 5 bacteria found, its likely that the cipro won’t have managed to reduce all the bacteria identified in your sample and the pain may be down to the fact that a bug not susceptible to it has gained a hold. Don’t worry, he will be able to help with further treatment options.

In all honesty, if you are doing a repeat sample ideally you should be off all abs for at least 7 days - hard as that sounds. You need the antibiotic to fully clear your system to coax any slowing growing bacteria out - something that can take up to 7 days. These slow growers can be just as painful as an ecoli which is the one usually picked up on standard testing.

His private patients are offered a longer culture period rather than the usual NHS 18 hours as he is completely aware how poor the testing is in terms of picking up an infection. He certainly won’t operate on your bladder with such a raging infection in place - it just runs the risk of introducing more bacteria into the bladder, worsening the infection and causing you more pain due to post op trauma.

He will use antihistamines on top of diet and has a number that he can offer you so if one medication is not successful at helping to reduce the inflammation and pain, another can be provided. The diet, and it is incredibly restrictive will help but ideally you really need to get rid of the raging infection first which will allow the mast cells to calm in the bladder wall and stop the pain and inflammation. It’s easy to treat the symptoms but you need to get at the causes to give you a fighting chance of getting on top of everything. Given the number of bacteria found, this needs to be monitored and you ideally need to be keeping in regular touch with his office to ensure he is aware of the situation.

You are in good hands with Prof VK and he will work with you to get on top of all of this.




JacT

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Posts: 5
Reply with quote  #3 
Moderator Susan, thank you so much for your in-depth reply and the information that has helped me to understand what is going on.
Like you, I suspect the infection hadn't cleared before my surgery, and of course it's become chronic. I had a cystoscopy during surgery to investigate the bladder pain, but as they were looking for cancer, they didn't see anything else. During my hospital stay I had a catheter which was removed on day 3, but reinserted late that night as apparently I wasn't emptying my bladder properly. No doubt, this contributed to the infection!
I was sent home with paracetamol only, (no ABs) as I didn't get on very well with the morphine-based painkillers and with one kidney I have to avoid NSAIDs. 
At my post-op appointment, when I said the bladder pain was back, the urologist advised my to do kegels and purchase a TENS machine for pain-relief which I dutifully did.....of course I now know that kegels are about the worst thing for bladder pain. I have stopped using the TENs as I'm not sure if it helps or draws more attention to the painful places?

The uro-gynae I saw on the NHS is actually on the same team as Prof VK, but I now realise that he has to work within NHS guidelines, and that the biopsy via him/NHS will be pointless and as you correctly point out,  raise the risk of further inflammation and/or infection.

I am paying to see Prof VK myself, using a small pot of money I had saved for our family holiday next summer, but I guess we have to make choices, and living with so much pain and the effect it has on my husband and children is really tough to see. So having a biopsy with Prof VK is not really an option, but you have made me more determined the resist the NHS biopsy as clearly it wont add any further information to what we already know.

I don't really understand why the pain flares while on the ABs? Although I guess there are many factors that contribute to the pain, ie mood and tension in the body. On the advice of my physio I mediate now to bring the pain down a little and do a series of stretches to relax the pelvic floor.

Thanks for the information about being in regular contact with Prof VK's office.....being a fairly reticent person this is a challenge for me, but if it helps with recovery, best I give it a go! What sort of stuff should I be communicating?

Many thanks Susan.




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JacT
Moderatorsusan

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Reply with quote  #4 
It is so hideously frustrating that the NHS is only able to offer limited treatment based on the guidelines (which are out of date) and yet going privately opens up so much more.  It simply isn't fair, particularly with something that should, with the right testing and treatment be able to be treated correctly regardless of your ability to be able to pay.

In terms of communication, it is best to write the following when you write to him and keep it brief:

(1) Any side effects you are experiencing on the new regime
(2) Have symptoms improved/worsened/no change and what symptoms you currently have and if any original symptoms have disappeared and new ones occurred.
(3) Your concerns about when the antibiotics finish 
(4) How does he propose to organise the next urine sample and follow up appointment (unless you have the paperwork already for the sample and a date in the diary).

I'd send it over and follow up with a telephone call.

Hope this helps
JacT

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Posts: 5
Reply with quote  #5 
Moderator Susan, thank you again for this very specific and detailed advice regarding being in contact with Prof VK's office; its really helpful.

I agree, such a shame that the NHS is offering limited testing regarding uti. It would actually have been cheaper for the NHS to have my urine cultured properly first time round when compared with the very numerous GP appointments, consultant appointments, scans and meds I've had in the last year, that have all led no-where. Although we cant really afford it, I am at least in a position to make some sacrifices in order to see someone privately, I am well aware that this is the not the case for many women suffering with bladder pain.
On the positive side, I have a fantastic NHS GP, even though the wait to see her is usually 2 weeks, it's worth it and she is very thorough. Additionally the NHS was great when a tumour was discovered on my kidney, I was seen by a consultant within 2 weeks, and surgery within 6 weeks.

Thank you again for your brilliant advice, I have learned more on these forums from the Moderators than anywhere else on the web 😉 



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JacT
JacT

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Posts: 5
Reply with quote  #6 
Feeling so despondent. Had my follow-up urine test and apparently it's clear....no bacterial were cultured.....finding it difficult to believe as how can one 2 week course of Cipro, knock all 5 bacteria on the head? And if the bacteria were gone, wouldn't I be feeling better?

Prof VK diagnosed histamine intolerance initially and found the 5 bugs in my urine, which have apparently now all cleared up.
I'm still taking the Ranitidine, Des-loratadineand Amitriptylene (for the pain). 
The pain is a burning in my bladder ,vagina and vulva. The pain increases after going to the loo, often its urethral after the loo as well. No pain when on the loo at all. Sometimes the pain is so high my legs start shaking. 

I've been having random stabbing pains now in my arms and legs, not sure if this a side-effect of the Ranitidine? Has anyone else had any strange side-effects on Ranitidine?

If you are a patient of Prok VK, did you find that histamine blockers helped? And did your bladder calm down, if so, how long did it take?

I'm wondering if I need to go back for another appointment....it's so expensive to have a consultation privately so I don't really know what to do.
I'd love to hear from other patients of Prof VK to hear about your journey.

I've been on the low-histamine diet for 9 months now, very strictly, and I can't say that its helped much...

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JacT
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