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jeananne

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Posts: 227
Reply with quote  #1 
After a long battle trying to find out what was causing my bladder to hurt I have now been without any bladder medicaitons since the middle of December.  During the month of January,  I experienced several days pain free and dared to hope that perhaps after all this time, it was the medication doing the harm and I didnt know to feel angry or happy.   Anyway that was short lived and the pain continued and it looked like I was back in the position of being without any answers.   I spoke to the "Bladder Health" office and spoke to them, about re-trying Eostrogen cream again.  This post today,  is to share with all you that have an overactive bladder that now after 5 months without medication my bladder started being just as overactive as it was in the beginning 11 years ago.  For the last two days, I am on the loo all the while. I dare not even take the dog out  for 20 minutes now in case I have an accident.  I do wonder if any of you have experienced coming off the bladder medicaitons and what happened then?  I would be interested in your views.  Best wishes  Jean
ModeratorKate

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Reply with quote  #2 
Hello Jean
So sorry to read of your distress again, after 5 months respite with this dreadful dis-ease.

Couple of thoughts, can you recall if you did anything different the few days prior to incident recurring?Did you have loose stools?

You say you spoke to BHUK office re starting estrogen cream, did you? and did it make any difference.

Not sure what medication you were originally taking, could you maybe, restart with only one (if you were taking multiple)

Re  not going out, with your Dog, could you perhaps wear incontinent pads or pants, to give you confidence.

Also why not ring the Office later today I understand that the Nurse will be online today and she maybe able to offer you some  assistance.

Sorry I can not be of more help, but letting you know we are listening and understand your distress.

Kind regards
Kate











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jeananne

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Reply with quote  #3 
Thanks for the reply.  I do not recall anything happening to make my condition worse but over the years i hae so many experiences where I was determined that I was on the mend only to find that after a few days it was all back to normal again.  I have only taken one bladder tablet at a time but I hjave taken them all over the period of 11 years.  Now I have been tablet free since the middle of December 2106 and now I am feeling very sore for most of the day.  I have only been taking the Eostrogen cream at night for a few days and I believe you need to be on it for months at least before it could help. When I wake in the mornings now my tummy feels sore all over so I do not things are not right.  The trouble is that now I am runing out of options to try.  I will keep you posted on my condition especially if anything changes.  Thanks for caring.  Best wishes, Jean
ModeratorKate

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Reply with quote  #4 
Hi
Just a quick thought before I am off for a while.

The Cream will help in keeping tissues moist and plump. I now only use a smallish amount not a full insert tube, and find that twice a week keeps me ticking over, again you will have to experiment for what best suits you.

Cant remember if you have tried D Mannose Powder, many find it very helpful as  maintenance dosage or even at the sign of a first flare, like bloated tummy etc, but remember it treats E. coli bacteria. also Oil of oregano may also help.

Do keep posting.
Kate

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kerrym

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Posts: 16
Reply with quote  #5 
Hi, this may seem a silly question, but are you sure you have overactive bladder syndrome. I only say this as that is what I have been diagnosed with for three years and have been taking Betmiga. After getting no better, I decided to go private and see Professor ML in London. His diagnosis upon examining my urine... a chronic embedded UTI. I'm now on antibiotics and hipprex twice a day long term. Good luck, hope you get some answers soon.
jeananne

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Posts: 227
Reply with quote  #6 
Thanks for your interest.  In all honesty, I do not know what I have any more.  I was first diagnosed with an overactive bladder 11 years ago when at first, I could not sleep bcause I was forever getting up for a wee during the night.  That led to a nurse doing a smear test, saying she thought my problem was a prolapse.  That led to being seen at a local hospital by gyne dept, and was told nothing wrong with me except overactive bladder and after a cystoscopy this was confirmed.  Snce then I have had all the normal bladder medications and eventually ended up with Miragron which only seemed to help during the day but at night I was up and down again so I decided lets have a try ridding myself  of medication and see whats happens.   Now after 5 month without any meds the pain has changed from "acute and nerve like" to now constant and soreness from first wee in morning to last thing at night.  Some times now I feel the need to have a wee after each time I urinate and sometimes I don't.  I am waiting to try out a tens machine next Friday.  I do not feel very hopeful but the next step means another cystoscopy to check that the bladder is inflamed or not.  Thats the history and I bet your as confused as me now.  I will report on any progress.  Best wishes  Jean
kerrym

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Posts: 16
Reply with quote  #7 
Hi Jean, sounds like you've been pushed from pillar to post. In my experience when the Urologists can't find anything wrong with the cystopcopy they diagnose overactive bladder. Ive now had three cystopcopys now, all a waste of time and more harmful because they introduce bacteria into the bladder. I hope you can get some clarification on what exactly is going on with you. I would recommend looking into seeing professor ML if only to rule out an infection. Don't go by what the NHS urine testing says, it's not accurate enough, the Professor tests your sample by microscope which is much more reliable. Good luck.
jeananne

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Posts: 227
Reply with quote  #8 
Yes it would be good to be able to see someone who knows what their doing but unfortunately I live top end of Derbyshire and not good to find local doctors.  I have recently been told about a lady urologist in Sheffield.  When I have had a few more weeks of no medication I am going to ask my GP for a referal or if not I could even  pay for another consultancy.  I wont have any saving left for my dementia fund at this rate.  Bye for now, I will let you know what happens.  Jean
kerrym

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Reply with quote  #9 
OK x
Erin

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Reply with quote  #10 
Hi kerrym / all,

I was really interested when you said you were diagnosed with an overactive bladder and later on discovered you had a chronic embedded UTI. I'd be very grateful if you could please answer a couple of my questions (if you don't mind). Has your treatment with Prof ML improved your condition at all? When you were diagnosed with overactive bladder, did you try Botox injections and if so did they help? How did they diagnose you with overactive bladder (urodynamics or some other test?) Had you tested negative for UTIs both at GP and NHS hospital level (as I have)?

I myself have been diagnosed with overactive bladder and voiding dysfunction (confirmed via urodynamics testing) however my condition (mostly extreme bladder pain) has not responded at all to Betmiga or Botox injections. Before I consider SNS surgery I am very keen, having read a lot of posts now on Biofilm & chronic embedded UTIs, to find out if this could be a possible cause of my symptoms for the past 11 years (and if I have been misdiagnosed again as OAB). I took the standard GP antibiotics in the past and never really got rid of my symptoms but I understand you can test negative for UTI and still have one of these biofilm infections - is my understanding correct?

I am anxious that my urologist may not know about biofilm so I was hoping to gather some more information before I arrange an appointment with her - ideally I want her to test me for this chronic embedded UTI/biofilm but I don't know how to go about it so any advice on this would be much appreciated from forum users and COB office.

Many thanks,
Erin
ModeratorKate

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Reply with quote  #11 
Hi Erin
There is a Biofilm thread on here with loads of info,

also if you contact the Office they will have loads of extra info and details you can take to your Doc.

Regards
Kate

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jeananne

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Posts: 227
Reply with quote  #12 
Quote:
Originally Posted by Erin
Hi kerrym / all,

I was really interested when you said you were diagnosed with an overactive bladder and later on discovered you had a chronic embedded UTI. I'd be very grateful if you could please answer a couple of my questions (if you don't mind). Has your treatment with Prof ML improved your condition at all? When you were diagnosed with overactive bladder, did you try Botox injections and if so did they help? How did they diagnose you with overactive bladder (urodynamics or some other test?) Had you tested negative for UTIs both at GP and NHS hospital level (as I have)?

I myself have been diagnosed with overactive bladder and voiding dysfunction (confirmed via urodynamics testing) however my condition (mostly extreme bladder pain) has not responded at all to Betmiga or Botox injections. Before I consider SNS surgery I am very keen, having read a lot of posts now on Biofilm & chronic embedded UTIs, to find out if this could be a possible cause of my symptoms for the past 11 years (and if I have been misdiagnosed again as OAB). I took the standard GP antibiotics in the past and never really got rid of my symptoms but I understand you can test negative for UTI and still have one of these biofilm infections - is my understanding correct?

I am anxious that my urologist may not know about biofilm so I was hoping to gather some more information before I arrange an appointment with her - ideally I want her to test me for this chronic embedded UTI/biofilm but I don't know how to go about it so any advice on this would be much appreciated from forum users and COB office.

Many thanks,
Erin
jeananne

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Posts: 227
Reply with quote  #13 
sorry, but I I have never talked about cystitis  and have never been under the Prof in London.  I wish I could see someone like him because like all bladder conditions, you usually end up sufferering with cystitis at some time. sorry I canot help you with this.  Regards Jean
kerrym

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Posts: 16
Reply with quote  #14 
Hi Erin, yes I was coming back negative for UTI via NHS dip tests. That's why I had three cytsocopys and a urethral dilation as they were sure I was infection free. I didn't have any uro dynamics tests, in my opinion when the Urologists can't find anything wrong they stick you with the overactive bladder label. I've been in treatment with the Prof for ten weeks going to see him again soon for my second appt. No, my symptoms haven't improved but I know this is not always a sign the antibiotics aren't working as the bladder itself takes a while to heal even after the infection has gone. Plus, the Prof told me as I've had it 3 1/2 years it'll probably take about a year to clear. Not a quick fix but I'm grateful I'm now on the right hands so staying positive. Hope that answers some of your questions. Ive lost all faith in NHS Urologists, so sadly don't think they will be able to help you the same way the Prof can. Best of luck whichever route you decide to go.
Erin

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Posts: 8
Reply with quote  #15 
Thank you all for your replies, especially kerrym. If you hadn't have responded to jeanne's initial post I would not have known about biofilm infections. My urologist has agreed to discuss with me at our next appointment though says the NHS in Scotland do not test for biofilm and it will be almost impossible to treat biofilm in accordance with Prof ML's protocol as it is not widely accepted although is familiar to a number of consultants. That in itself is disgraceful as the word biofilm has never been mentioned to me in 11 years of seeing Urologists. It's also despicable that this test and treatment isn't offered on the NHS! If there is some sort of campaign to get testing done on NHS I'd be happy to join. I'm considering contacting my MP etc irrespective of whether I have a biofilm infection as it seems inhumane and discriminatory for women whom cannot afford to go private. I'll keep you posted if anything useful comes of it all. Kind regards, Erin
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