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Erin

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Posts: 14
Reply with quote  #1 
Hi all,

Since I last posted I have managed to get an appointment with Prof ML. It's this Thursday and although I've pushed for this I suddenly feel scared.

I've been misdiagnosed before over the past 11 yeara and I don't entirely trust my current diagnosis of OAB due to my high bladder pain levels pretty much being my primary concern. I've gotten to the stage where I am doubting everything and I don't know who or what info to trust.

I just wanted to know if anyone had experienced the first appt with Prof ML and was able to tell me what to expect and also if anyone has been told they don't have a biofilm infection?

As I said, over years of being told there's different things wrong (or nothing wrong) and never relieved of the pain, as you can imagine I'm pretty skeptical. In my experience, I have found different Consultants have tended to diagnose me based on their particular specialism and so I'm worried I might be told I have a biofilm just to discover years down the line (and hundreds of pounds out of pocket) that I've been misdiagnosed again.

I'm 28 next month. This has been ongoing since I was 16 and at this point I am desperate to find the answer, the right answer. The pain of course drives me crazy but in a way being unsure of the why behind it makes it worse and hard to manage mentally/emotionally.

To be honest I'm scared he says it is a biofilm incase it's another misdiagnosis (not to question his credentials but I've been down this road so many times). Think I'm more scared he says it isn't a biofilm then my only option left for OAB is SNS according to my NHS Consultant.

Then I read posts from IC Hunners sufferers and I think it could be that - although had a cystoscopy and urethral stretch 10 years ago and no mention of Hunners then. I'm so confused. I feel lost and I just want my life back (pain free 15 year old me haha).

Sorry for the rant, I'm just extremely nervous and feel a lot's riding on this appointment. Any thoughts on my specific questions would be appreciated.

Cheers
Erin
Moderatorsusan

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Reply with quote  #2 
Erin

Its completely understandable that you have concerns about seeing yet another specialist. I’ve sent you a PM with some links including treatment success stories so that you can have a read.

To be honest most specialists you see will have their own line of what is wrong with you and a treatment plan and all sound very logical. Sadly its often a complicated jigsaw puzzle with several different issues at play all at the same time so you could have a chronic infection for example but also be struggling with hormonal problems which exacerbate the infection because of the fluctuations in hormones. The problem is these specialists don’t think concurrently and take a whole body picture, they just focus on your bladder. Put 9 urologists in the room and they will all have a different theory.

Prof will be straight up with you and tell you whether he feels you have an infection or another issue with your bladder such as OAB. He won’t waste your time taking your money for nothing. Go armed with questions and really interrogate him. He likes people to question his diagnosis and treatment methods and his letters are not the usual 3 lines but 2-3 pages of detailed info.

Susan
ModeratorKate

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Reply with quote  #3 
Hello Erin
Awh! Bless I am sure Susan will have given you some wonderful help and advice. Alsoif you contact BHUK today they will advise you and could also send you a Biofilm pack and other info.
I copy here an earlier post by Susan it also may help others reading.

"

When seeing Prof for the first time he will ask for a sample on arrival which he will examine under his microscope checking for white blood cells and epilethial cells as a marker of infection. This is not a standard NHS urine test so he won't be culturing your urine to determine what bugs you have and antibiotic sensitivities. You do not have to come off any antibiotics before seeing him. All patients are checked whilst on antibiotics (unless seeing him for the first time if you aren't previously taking any prescribed by another specialist or GP).

He will take a history from you of your symptoms etc. he has around 20 questions that he will ask you such as do you get up in the night to pee, does it hurt when you pee, is there pain as the bladder refills, does the pain radiate out and where, do you leak when you cough, laugh, can you make it to the loo when you out the key on the lock, how many times a day do you pee? All this goes into a programme he has written and from there he will determine which abs to start you on based on the description of your symptoms and the urine microscopy. Don’t be put off that he is typing away as you talk rather than looking at you and he fires questions at you. He is listening but simply putting everything into your notes.

If you have any recent positive sample test results with you, take them with you but he may not base his prescription on what they say. Please also make him aware of any allergies or any previous reactions to medications. All will impact on what is prescribed.

He will tell you to keep in touch with him at any time as it can take several ab tweaks before things settle and it may get worse before it gets better as the bugs will fight back or you will suppress one bug for another to rear its ugly little head.

He will give you a letter and send a copy to your GP and will follow up in around 8 weeks (with a specific appointment which he will arrange whilst you are there). You will hear the words "dogged persistence" and you will need to adopt this as it can be very up and down. He is available on e mail and if you react to one of the abs you must tell him immediately so he can switch you.

Good luck"


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Erin

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Reply with quote  #4 
Hi Susan & Kate, thank you very much for that info it's much appreciated & has put my mind a little more at ease
Bholly

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Reply with quote  #5 
Hi Erin

I hope your appointment went well yesterday? Did he tell you you have an infection? I asked the very same question myself before I saw him for the first time in May and he did tell me that I did, with a wbc of 60. I was also so sceptical after seeing other specialists and having different diagnoses and it does appear from reading posts from other people who have seen him that they do all seem to get told they have an infection. However, I was put on Hiprex (I didn't want to take the antibiotics suggested as I'd suffered terribly with thrush when put on 3 months of Nitrofurantoin by another urologist the year before) and when I went for my follow up 3 months later my wbc had gone down to 0. I have felt much better since starting the Hiprex. I am able to eat and drink more normally and only have minimal symptoms now. I have also worked on my anxiety levels which I think has also helped a lot (I did the Lightening Process earlier in the year to help with this) I do wonder if this is as good as I'm going to get and if my bladder has been left slightly damaged and sensitive after the 2 years of pain/infection, but I am able to live life normally now and haven't needed to take painkillers for many months. I am going back to see him in a couple of weeks to find out how long I need to continue on the Hiprex.

All the best
Bridget

Erin

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Reply with quote  #6 
Hi Bridget, thanks for asking it went well in the sense that the Prof diagnosed me with a chronic UTI. I'm happy and hopeful to hear that you are feeling an improvement following commencement of the Hiprex. That's great n I hope you make a full recovery [smile] I've been prescribed Hiprex too alongside cephalexin. I still can't quite believe it that I've had a UTI all this time. I am so so angry. I don't understand why I had never heard of Biofilms until a couple of months ago or why apparently none of the 5 consultants or countless GPs I've seen over the past decade knew nothing either. Worse still, the NHS refuses to test people for this when they know fine well the current dipstick test is so flawed. I'm outraged not just for myself but for every woman on this forum who is or could potentially be suffering from a Biofilm/UTI and is going undiagnosed or untreated. It's reprehensible. Whether or not the NHS agree with the antibiotic protocols followed after diagnosis of a Biofilm/chronic UTI, I still do not understand their logic behind denying women the test? I feel sick to think of what I've lost because of this condition and how far I've been pushed to my limit by what started out as a simple UTI. I would laugh at how absurd it all is if I hadn't undergone unnecessary and painful procedures, surgery, countless pills and almost taken my life. This has been physical and mental torture for me and I'm sure I'm not alone in that. They cannot be allowed to do this to people. Honestly, I've been beaten down so much by this condition that I find it hard to get my hopes up even now about returning to some semblance of a normal life but for the first time in many years, I dare to think there might be some hope for me to get better. I just wish I'd found out about all this sooner. If this treatment works and the diagnosis is confirmed, I plan to make sure others know about it. I'm not sure how well-known Biofilms are in England but I haven't heard a peep about it in Scotland. If it wasn't for KerryM on this forum cross posting in the overactive bladder section that she too had been misdiagnosed with OAB when she in fact had a chronic UTI, I would never have known about this. I'm really thankful for this and the forum. Cheers ladies.

Best wishes,
Erin
Bholly

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Posts: 19
Reply with quote  #7 
Hi Erin

Are you on the Facebook group for Embedded Bladder Biofilm Infection? There are lot of people on there who are in treatment with the Prof so it is useful to compare symptoms, treatment and progress.
I completely understand your anger. It is so hard trying to find a way through all the different opinions and treatment options while in pain and feeling desperate. I really hope you start to improve quickly on the antiobitics and Hiprex. I did struggle with the Hiprex initially as it caused a lot of burning but I cut the tablets down and increased the dose slowly which worked for me.

Good luck
Bridget
Amypip

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Reply with quote  #8 
Hi Bridget

Can I ask how I find the Embedded Biofilms group on Facebook?

Thanks

Amy
Moderatorsusan

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Reply with quote  #9 
It is I’m afraid only open to those in treatment with one of the Chronic UTI specialists and is a closed secret group on FB for patient confidentiality reasons. BHUK can provide a Biofilm pack with specialist names and research papers if you are interested.
Jude6

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Reply with quote  #10 
Hello Erin, I am brought to tears reading your post. I am 32 and like you have been suffering since the age of 16. I've been to GPs, specialists, had scans, cystoscopys, dilations, been put on low does LT antibiotics, been told it's in my head, more recently been asked by my current GP "what else do you expect - you've had antibiotics and seen a specialist....!?".
I have flare ups almost each year and the past 12 months have been (on and off) hell. I'm currently in the middle of a flare up that started with bacteria being detected by the (inadequate) GP dipstick 3 weeks ago. After a short course of nitrofurantoin and a second of pivmecillinam my symptoms are still here but the worst being a pretty much constant pain in my bladder. GP latest text message communication was "negative - no further action" which is just another kick in the teeth but to be quite honest one I was totally expecting. To say I have lost faith in the NHS treatment of UTIs would be an understatement. 
I've done a lot of research over the past 3 weeks and I am convinced I have a biofilm infection (GP looked at me like I was speaking a foreign language when I suggested this last week). I have an appointment with professor ML in May so I just need to hang in there for the next couple of months. I like you am nervous and sceptical however can see a light at the end of the tunnel after 15 years. 

I hope you are well and I wish you all the luck for a future free of chronic UTIs [smile] 
Erin

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Posts: 14
Reply with quote  #11 
Hi Jude,

So sorry to hear you've been suffering all this time, it's truly horrific that a person can go through something like this for so long with little or no help. Yeah same, literally heard all of that too over the years! 

From the research I've read too, the dipstick test just isn't adequate. I've tested negative, had inconclusive ones, even had one test positive for UTI as recently as 2013 and yet the GP did nothing, just told me to get retested, which was then negative so UTI was ruled out.

Awful to hear how you've being treated, it really does feel like a kick in the teeth, I know what you mean. I had one really good NHS consultant who I basically asked to test me for a biofilm infection and she tried to get it done but basically said the NHS wouldn't allow it so yeah private's my only option, being from Scotland. I don't think a lot of GPs know about it (or consultants for that matter). My consultant knew a bit about it and was quite receptive to testing me but she was pretty sceptical of the theory behind biofilms. 

Like you, the symptoms of an infection just fit for me and so I thought it was worth getting tested. Then I was told I did have a chronic embedded UTI and that I'd been suffering with it all this time, I've honestly never felt so angry and relieved all at the same time haha. 

Best of luck with your appointment, let us know how you get on. I hope you get a resolution and the answer you want (I wasn't sure what answer I wanted!) At least you will know either way, knowing was half the battle for me. There definitely is hope, so keep fighting!

I'm not too bad, antibiotics not working for me yet but I'm hopeful and determined this won't beat me! Some days I'm more convinced than others of my rhetoric haha. Thank you Jude, same to you, take care and keep us posted.

Best,
Erin
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