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 Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain

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Franrose



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PostSubject: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sun Jul 24, 2016 3:28 pm

My history is one of recurrent UTIs following intercourse that have recently developed into four months (thus far) of burning pain in my bladder.  This affects my mood and life greatly.

I am a 41 yo female living in Qld Australia.  I am married and have two children both born by caesarean nine and ten years ago.

About 9 years ago I started getting frequent UTIs following sexual intercourse.  Generally these were sucessfully treated by Augmentin. Symptoms were pain, urgency & frequency, with WBC & RBC in urine.  Over time, I started to get visible blood in the urine within hours of the pain of UTI starting (sometimes voiding red blood minutes after voiding urine).  In recent years, much of the pain and all of the frequency/urgency symptoms cleared up shortly after antibiotics were started but some mild pain that left me sensitive to particular foods remained for a few weeks after treatment.

Generally speaking, I have good bladder capacity so when the first urologist I saw in 2009 suggested IC rather than recurrent infections, I declined a cytoscopy/hydrodilation procedure (it was very expensive and I did not feel that it would add value at the time).

Around the same time, my then GP put me on a ?three month course of low-dose antibiotics - I am unable to recall exactly which antibiotic this was or the exact length of time.  I recall that I still had bladder discomfort at times during this treatment, which followed an infection.

A second urologist I saw in 2011 performed a flexible cytoscopy and diagnosed me with pseudomembranous trigonitis.  He prescribed cephalexin to be taken as a prophylactic after sex and five days' Augmentin duo forte as a treatment if an infection did arise.

This treatment worked extremely well for about three years - I had no infections, no pain, no urinary symptoms at all.  At some point, I had a cervical smear test and forgot to take cephalexin (I had had UTI after a smear test before) and I had my first UTI in several years.  Symptoms of pain/urgency/frequency/bleeding resolved quickly with Augmentin duo forte, although some residual pain remained for a couple of weeks.  

The next infection I had happened after intercourse - I discovered the cephalexin I had been taking had expired and I had not noticed.  Similar progression to the last infection - infection appeared to resolve although some residual pain for a few weeks.

Since then I have had a couple of similar infections after sex, despite taking cephalexin as prophylactic.

The current situation I find myself in is a little different - four months ago, again after sex, I had the pain/frequency/urgency symptoms of UTI, but this time no blood and no WBC.  It affected my mood in a strange way also - I felt very agitated and angry.  As the pain escalates quite quickly I took my usual Augmentin duo forte and frequency/urgency resolved, but some pain remained.  After six weeks of pain I saw the urologist from 2011 who had diagnosed pseudomembranous trigonitis to see if there had been any progression with the treatment of this finding.  He could not remember having diagnosed me and felt I likely had IC instead.  As I was in pain and fairly desperate, I agreed to a cytoscopy/hydrodilation that same day.  Findings were minimal glomerulation, no fissuring, persisting pseudomembranous trigonitis, and hydrodistention to 1000mL before tachyapnoea/tachycardia.  I have not yet had a follow up appt with my urologist but I understand he wants to explore neuromodulating medications etc.

Between the cystoscopy/hydrodilation two months ago and now, I have had ongoing pain.  At one point, the pain increased markedly exactly as if I had UTI and I felt 'unwell' in myself (and agitated again).  I had some mild bilateral flank pain also, and as I was away in a rural area without a medical service, took a course of Augmentin duo forte again.  This completely resolved my symptoms for two days, but on the third day burning pain returned.   On returning home I requested a MCS with my GP.  A clean catch MSU found no WBC, no RBC, 1x10*6/L squamous epithelial cells and >100 x 10*6 CFU/L enterobacter aerogenes.  Report comments suggest this is a bladder coloniser or vaginal/distal urethal contaminant but as I am symptomatic, I have been prescribed 5 days worth of Bactrim DS.  As of day four, burning pain continues and frequency fluctuates but is more frequent than is usual for me when I am well.  

Overall, my bladder pain significantly affects my mood and quality of life, but I find that the moment I get some relief, I feel 100% myself again.

Other things of potential interest:

I have had two caesarean births requiring catheter use following each time.  After both c-sections (with epidural anaesthesia) I lost all bladder sensation and was unable to urinate or tell I needed to urinate for a couple of days.  This was managed with intermittent catheter. This is the only time I have experienced the loss of all bladder sensation.

I have never had issues with urinary incontinence.

The pain medication I have tried to manage the current burning pain I am in includes panadol, panadeine forte, nurofen, voltaren, and endone (as prescribed by urologist post cysto/hydro).  Endone dulls the pain & panadeine forte is sometimes helpful, but generally speaking the other pain medications do not help.  I have only used endone three times as I am conscious it is a strong and potentially addictive pain medication.  

I have also tried the antihistamines we have at home (loratadine, promethazine) to no avail.  

I tend to use ural a lot - most of the time, this is helpful.  

Prior to starting Bactrim DS four days ago, I used Hiprex 1g twice daily for a week and found that initially this was helpful, in the same way that Autmentin duo forte was helpful initially.  I am not taking Hiprex while on this course of Bactrim DS (and did not take ural while taking Hiprex), as per medication instructions.
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Andi2016

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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Mon Jul 25, 2016 7:15 pm

Hi Franrose,
I was interested in reading your story, as there are quite a lot of similarities to my history. I am extremely suspicious about prophylactic antibiotics. There are studies from the US that are demonstrating that subinhibitory antibiotic therapy (aka prophylactics) might do more harm than good. If you're interested, read this thread in the Latest Research section: http://www.icbpsforum.com/t56-could-short-course-antibiotics-for-utis-which-appear-to-promote-resistant-bacteria-and-bacterial-reservoirs-possibly-lead-to-the-development-of-ic-pbs

When reading about the pseudomembranous trigonitis diagnosis (which I didn't have), you might be interested in looking at this 2004 study.
------------------------------

‘Urinary urgency and frequency, and chronic urethral and/or pelvic pain in females. Can doxycycline help?’, Authors: Burkhard F.C., Blick N., Hochreiter W.W. & Studer U.E.
http://www.ncbi.nlm.nih.gov/pubmed/15201781


Study: 103 female chronic LUTS patients were tested using urethral and cervical/vaginal swabs, serum analysis, urine examination and culture, and bladder barbitage. Cystoscopy found all patients had trigonal leukoplakia (white patches at the base of the bladder), with 15% having an infectious organism identified through culturing and 30% showing leukocyturia (pus cells).

All 103 patients were treated with doxycycline and a vaginal antimicrobic and/or antifungal agent. Sexual partners were simultaneously treated with the same doxycycline regimen.

Outcome: After a four week treatment period with doxycycline and vaginal hexetidine, 71% of women reported being symptom-free or having a reduction in symptoms. The simultaneous treatment of the sexual partner was attributed to the success rate in the study, but was not proven.


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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Tue Jul 26, 2016 6:59 am

I'd love to give up prophylactic ABs, for more than one reason, lol.  But thus far (in nine years) they are the only way I have found that I can have any kind of normal relationship with my husband without constant ongoing pain, which sure is a mood killer.  I know there's the school of thought that it's better to treat an infection as it arises (rather than constantly prevent) - but I was getting infections every single time, with residual burning pain for three-four weeks after treatment (which definitely made a difference to the much stronger pain & bleeding etc that came with the infection initially).  I don't know if the residual pain was from the bladder healing, or the fact that the cells of the bladder are different in the trigone (squamous rather than epithelial), incomplete clearance of bacteria or just the fact that the nerves there want to wail about the injustice of it all for a few weeks longer, but I do know it was a tough way to live before I started the prophylactic.

I have a long awaited uro appointment today (I seem to have to wait months to see mine privately, and never even hear back if I try to go publicly) and I have a copy of that study with me, lol!
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Tue Jul 26, 2016 8:34 am

Taking the study was a waste of time... he's not into it.  I suspect he thinks I'm 'one of those'... He said (in not so many words) I'm clutching at straws because [patients in general] don't like to be told they have chronic pelvic pain syndrome.  I guess I just don't understand why my assumed chronic pelvic pain syndrome responds to antibiotics so well most of the time or why my bladder bleeds when things flare up - how do oversensitive nerves make the bladder bleed?  I asked that and he said I'd never mentioned bleeding before.  I give up.  I sure have!  (I'm very glad I take my husband to these appointments to see how things play out.)

Anyway, he has agreed to finishing a 10 day course of Bactrim (in response to the growth of Enterobacter Aerogenes, admittedly without pyuria, last week) and then doing two months of daily Macrodantin, and has also given me a script for Endep 25 for neuromodulation.  I'm hopeful... not super keen on the Endep, but hopeful lol - I just wish I didn't feel like I was some kind of crazy person when I come out of the consults.
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Andi2016

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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Tue Jul 26, 2016 10:27 am

Don't worry ... we're all 'one of those' because they don't know what to do with us. I'm sorry you have been written off as clutching at straws, but I'm not surprised. I took my husband to an appointment once with an infectious disease specialist and although it was a very upsetting appointment, I'm glad he was there and could witness how horribly I was treated.

I wonder how long it took your sample to get to the lab and be examined? You mention you had bacterial growth without WBCs. There are studies that demonstrate that WBCs aren't very stable outside the bladder - and they don't report on anything under 10 white cells/mm3, not to mention if you supplied a diluted urine sample in the first place. But your urologist wouldn't be interested in any of that. I've raised this in another post here:
http://www.icbpsforum.com/t45-sterile-pyuria-significant-or-not-could-this-warrant-further-research

Good luck with your continued antibiotics. Document your response so you can share it if you happen to find a more current and open-minded urologist. I'm not so sure they exist yet, but I think there's a good chance younger medical students will look at this newer research differently to what their Jurassic predecessors have.
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Tue Jul 26, 2016 10:50 am

So good to be in like-minded/supportive company!  

 <- crying with laughter about it all... because otherwise would just be crying lol.
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Tina2



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 11:56 am

Hi Franrose, I wont say welcome because this is not a forum any of us really want to be involved in because it means we have this horried IC, but I will say HI, and you will find many friends here who actually understand how you feel.
Have you tried taking DMannose on a daily basis ? Far more natural than Hiprex but has similar effect plus it helps rid your body of any nasty ecoli that may be lurking in the background.
T.
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 1:40 pm

Hi Tina2!  Thank you for the welcome Smile

I have indeed tried DMannose - unfortunately the bacteria I am dealing with this time is resistant to both DMannose (and Hiprex and my usual ABs) so it didn't help, and I wasn't sure if it might have made things worse.  Funnily enough, with urine samples I have had cultured, more often than not the result comes back positive for something other than E.Coli.   In the last 9 years I can recall Encterococci, Corynebacteria and the most recent, Enterobacter aerogenes, although I've had a number of infections that weren't taken to the culture stage as I just went straight to antibiotics (which sorted the problem almost instantly).  

The Bactrim worked, incidentally...  My urologist suggested I finish a 10 day course and then move to a couple of months of nitrofurantoin as prophylactic, although he made it clear he believed my problem was nerve related and not bacterial (he told me that by thinking it was bacterial, and that the pseudomembraneous trigonitis is somehow involved - which is what he told me 5 and a half years ago - I am "clutching at straws").  It took six days to make a real difference, but on about day 6/7 I was pain free - and it lasted more than a couple of days, I was in heaven!  About 7 - 10 days after I finished the Bactrim (and was on nitrofurantoin) my symptoms returned.  After a week of the returned pain and increased frequency,  I asked my GP if I could try Bactrim again - and it worked a second time.  Again, it took six days for symptoms to resolve completely (and both times I took a 10 day course).  So my GP has now put me on a low dose of that to try as prophylactic to prevent a third occurrence.  So far, so good, I am on about day six completely pain free after months and months of horrible burning.  Bactrim has saved me from a miserable existence!   Smile

(I have lost faith in my urologist after this experience, because he was so dismissive of my thoughts and made me feel stupid, hysterical.  And yet if I had not pushed for a urine test myself, a full four months after this episode began, I would still be in pain.  Clutching at straws indeed.)
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Tina2



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 2:54 pm

Hi Franrose, You are not alone most of us have given up on GPs and Urologists all of whom are dismissive, this is why were are all so blessed to have Prof Marshall working so hard to find "something" to help us. I am trying traditional chinese Acupuncture. The first few treatments were awful and just flaired things up but I am up to 9 treatments now and the pain is better just cant get rid of the burning.
You are different though as you have a definate infection. I asked my GP for more antibiotics to see if it would help, he gave me 7 days and flatly refused to give me any more, so I changed GPs but now the GP is moving on.
Few except those with IC really understand what it is like, how exhausting the never ending running to the toilet is and the burning , oh how I would like to put the burning out.
You will learn lots here and I am sure gain many friends.
T.
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 3:04 pm

Well - sometimes it's a definite infection Tina2 - sometimes nothing shows, or just white cells and/or blood (probably because I've had so much water and/or ural to drink, in desperation, by the time a GP appt rolls around).  This time bacteria grew, but there were zero white cells. I'm confident it was a clean catch sample.  How does that work?  Mystery!  And after the first round of Bactrim, when I was when I was on nitrofurantoin but the burning had returned - there were still no white cells, and nothing grew.  Which is not surprising as the nitrofurantoin would have knocked off bacteria in the sample, but still: most Drs would not prescribe another lot of ABs in that case.  But I asked my GP if she would, based on the fact that I've had months of issues, a bacteria did grow before I started ABs, and Bactrim worked.  She was happy to do that.  And when I went back to her to say, "it worked a second time!" and to ask if I could use Bactrim as a prophylactic instead of nitrofurantoin, she made that suggestion to me before I made it to her, lol.  So she is willing to try things based on what works, even if it doesn't necessarily make sense based purely on urine tests.  I feel so grateful for her for taking that chance because I am not in pain right now, and I feel so lucky/grateful/happy as a result.  I'm also eating/drinking whatever I like (except alcohol, as that is not a good idea with Bactrim) and nothing is bothering my bladder.  The difference is night and day.


Last edited by Franrose on Sat Aug 27, 2016 4:00 pm; edited 1 time in total
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 3:15 pm

The common threads to all my episodes in the last nine years are that that I have symptoms following sex if I don't use a prophylactic AB, and (the right) antibiotics make things better.  Regardless of whether my urine samples grow something on culture, show WBCs, show blood, or show nothing at all.  

The thing that has made this episode different is that no WBCs ever showed (which is strange - yet my symptoms were the same as usual), and the bacteria that grew on culture (after four months of problems) were not sensitive to the ABs I normally use as a prophylactic or treatment.  

I 100% believe it is just my trigone involved, based on my symptoms (burning pain in the trigone, bleeding within a few hours) and the regularity with which I have these episodes following sex.  I don't feel like the whole bladder gets involved, I had at least one UTI back in my 20s and it was different to what I get now.

If I don't use a prophylactic AB I get issues every. single. time I am intimate with my husband.  Since I started using prophylactic ABs five years ago, frequency has dropped significantly to exactly three times since then as mentioned above: once after a cervical smear test I hadn't taken a prophylactic AB for (smears have caused me issues before too - I had forgotten!), once when I discovered too late that my prophylactic antibiotic had expired, by a year [whoops!!], and this last time, when a bacteria not sensitive to that prophylactic was involved.  As I mentioned, this episode ended up lasting lasted five months - the longest time I have ever had pain - and I suspect completely needlessly if the idea that a different bacteria could be involved had been ruled out first by way of a simple M/C/S.  But urologists don't seem to want to double check for potential bacterial causes, especially if you are not a textbook presentation - much better to book you in for thousand dollar procedures first - and my urologist no longer seems to think pseudomembranous trigonitis can cause women problems.  Because 30% of all women have it, and those 30% don't all have issues, so ipso facto, PS must not ever be involved.  (Can you tell that I am actually quite angry about my 'care'?  Twisted Evil )

Hopefully I will just keep improving - I am not overdoing it in terms of my diet yet and I am still too nervous to be intimate with my husband... I just want to give that trigone area time to recover really well.
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Tina2



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 4:24 pm

I am suprised that you have a GP who is so willing to work with you and in particular give you bactrum, wish I could get hold of it. Do you mind me asking where in Qld are you ? There is lots of information on this site and I am sure others will come along to offer you help and advise.
T.
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Franrose



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PostSubject: Re: Pseudomembaneous trigonitis, frequent UTIs leading to ongoing pain   Sat Aug 27, 2016 4:31 pm

I am south east Brisbane.  The bacteria from my first urine sample (mid July) tested positive for a bacteria sensitive to Bactrim and not the ABs I usually take, so that is why I was first prescribed it.  It seems as though quite a few people can have reactions from it, but I have had no issues.  You definitely can't drink alcohol with it as it causes a reaction that can make you very sick. I know my GP had to call and get authority to prescribe me a longer course but she was happy to do that based on the fact that it has worked for me.  She is lovely!
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