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jodiette

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Posts: 16
Reply with quote  #1 
Looks like I'm heading for a flexible cystoscopy with a biospy. I'm 2hr journey from the clinic in London, some of which will have to be walked even if its across the length of Waterloo station. I may have to have it done locally if I cant walk afterward, but the local guy is not an expert in this condition (prob mast cell issue). How have you guys found walking following cystoscopy? Thanks...!
L8tti_x

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Reply with quote  #2 
Hi Jodiette

I had My cystoscopy in May 2016.

I could walk afterwards but the procedure itself was painful for me and definitely increased my burning symptoms for some weeks after. To set the scene... I was wrongly diagnosed with IC when in fact I have a chronic UTI.

I regretted having the cystoscopy at first but then I reasoned with myself and figured it was essential to rule out something more sinister.

Good luck. Hope all goes well.


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Lotti
jodiette

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Reply with quote  #3 
Hi Lottie - thanks - that is interesting. Did they discover the infection during the cystoscopy? the local urologist says he can find embedded infections by taking a biopsy of inflamed tissue during cystoscopy..
L8tti_x

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Reply with quote  #4 
My cystoscopy didn't find anything. I had numerous tests and procedures in the run up to my diagnosis which showed nothing.

It was only once in treatment with the Professor that the infection was found.

I'm happy to go into more detail about my journey if you think it would be useful... it all started for me with a random one off uti in March 2016. Basically it never went and set up camp in my bladder! I had never had any bladder issues prior to that.

Several short courses of antibiotics, 2 GPs, 2 urologists, blood tests, cultures, swabs, sti screens, ultrasounds, MRI and a cystoscopy later... I found this forum and joined up. I had never heard of biofilm infections but booked to see the Professor as soon as possible. I have been in treatment for 18 months and am currently symptom free; although there is a long road ahead as I still have a low white cell count. I have reservations about long term antibiotics but currently I am choosing life.

All the best.

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Lotti
jodiette

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Reply with quote  #5 
Hi Lottie - would that be Prof VK ?
L8tti_x

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Reply with quote  #6 
Prof ML. I found him through Bladder Health UK; they sent me a biofilm information pack with all the details.


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Lotti
jodiette

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Reply with quote  #7 
ah thanks..yes I've heard about him.   Got put off due to his heavy abx treatments.  I only know of one abx which doesn't send me into shock & and I only managed that for 3 days ( I have mast cell activation disorder).  The info pack sounds interesting, I'll ask for one.  Cheers!  x
L8tti_x

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Reply with quote  #8 
Good luck x
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Lotti
hollyberry

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Reply with quote  #9 
Jodiette, I had a cystoscopy/biopsies on 1December under anaesthetic, I had it done at 5.30 pm and by 8.30 pm walked out of the hospital. I did have a hire car take me home which was an hour away. We made one 'pit' stop en route home, but I do recommend you have bladder protection pads in your bags, as I found I needed this. This is my 3rd cystoscopy in 5 years and I have been pain free since this latest one, and no leaking apart from day of procedure. The diagnosis was confirmed as I.C. but with Hunner's ulcer, which is the first time this has been mentioned in 7 years Since then I have started weekly Cystitat instills, again with no bladder pain. I still keep to the recommended diet, avoiding any foods/liquids that could cause flare ups.
I wish you well with whatever you have done. RB.

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RB, Surrey
jodiette

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Posts: 16
Reply with quote  #10 
Ah, thanks hollyberry I'd completely forgotten about the need to pee and the leaking. I will ask more about that. SE trains are not the best place for a a pee :-O
Jaycifer

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Posts: 10
Reply with quote  #11 
I have had 2 Cytoscopy procedures in the last 14 months, and they were absolutely painless. No problem at all, you should just be careful to empty you bladder, as you may have a leak from the flushing water.
I did not have a biopsy so that may be done under sedation.

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Jacqueline de Marigny
jodiette

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Posts: 16
Reply with quote  #12 
Thanks Jay.. it seems impossible to be sure. I've heard everything from ppl in agony & having to go on morphine for a week to ending up in a wheelchair for 2 months.., to no
problems at all. :-/
Moderatorsusan

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Posts: 1,065
Reply with quote  #13 
Prof VK is an excellent specialist and also believes in embedded infections alongside Prof ML. They treat differently due to VK’s patients often having mast cell issues although the origin of these MC issues is yet to be formally ascribed.

You are in good hands. I assume he did prescribe abs for post op infection?
jodiette

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Posts: 16
Reply with quote  #14 
Hi Susan, I haven't seen him yet, appointment in a few weeks.  I help out with a FB group for those with mast cell disorders and so far he's the only specialist we know of who deals with MC issues with IC, tho he has ridiculous waiting lists even for private patients, getting to the point where I thought I'd look elsewhere as it was just so impractical to wait months on end for every appt.  I quick google brings up other clinics, at least in London,  who obviously recognise MC disorders as causing this so hopefully expertise is growing and more help will be widely available soon.  
doloroso

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Posts: 89
Reply with quote  #15 
Hi!

I've had 2 cysctoscopies over the past 4 years and was fine afterwards. Just a little sore.
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