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GeorgieGirl

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Posts: 17
Reply with quote  #1 
Hi,
I am new to this site, so hope I am posting this correctly.
I am not sure what I have, in terms of a name, but my symptoms are that I just want to wee all of the time. I have no infection, and have suffered with cystitis in the past. I have taken Oxybutinin and Vesicare, both gave me bad side affects and have now been taking Mirabregon for about a week. How long will it take to work? I can have a good day or two and then, like today it is back.
It is so getting me down.
I have a cystoscopy booked for 13 days time, so I hope to learn more.
Are there any other drugs that have calmed the urge that I should be asking about that you can suggest?
Thanks for your thoughts.
ModeratorKate

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Posts: 1,611
Reply with quote  #2 
Hello Georgiegirl
Welcome to our Forum and hope you will fin much to help you ease your symptoms and questions.

Unfortunately as you will discover we are all so different there is not a 'one fix all'.

Do read through as much as you can, and if you use the search button at the top of the page you will find past posts with relevant info to help you.
Here are two links that I typed in for Cystoscopy,( The first link I used 1st sept to 30sept in the date range)

http://cobf.websitetoolbox.com/search?keywords=cystoscopy&searchin=message&member=&do=findposts&id=&replies=atleast&numreplies=0&daterange=specificdate&custdatefrom=09%2F01%2F2016&custdateto=09%2F30%2F2016&sort=&order=desc&radio_showas=posts&btnSearch=Search&action=doSearch

http://cobf.websitetoolbox.com/post/rigid-cystoscopy-advice-please-8093212?pid=1292109316&highlight=cystoscopy

Do  also consider becoming a Member of COB ( soon to name change become Bladder UK)
They will send you a Welcome pack and you will have access to much more support and advice.

Whatever do keep posting and asking, am sure others will reply with any further advice to help you.

Kind regards Kate


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otty

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Posts: 44
Reply with quote  #3 
Hi you say that you do not have any infections?
 What tests have yiu had?
 If you have had the dip stick this only shows uo 30% of infections and if your samle of wee has been sent off to the hospital the tests the NHS complete only will pick up 70% thus leaving 30% which has not been detected.
I think that if you feel that you have an infection and no detection picked up then you probably have an infection.
The Drs should not be telling patients that they do not have an infecetion when using the dip stick or sending sample off for testing  if results are negative, they need to educate there pateints as the patients know there own bodies. If you feel that you have an infection and have the symptoms adn are getting negative results then you probably have an infection.
I went for yesars to GP who told me that I did not have infections? However after carrying out my own research I discovered that the NHS testing is not infalable. At one time I thought that I was going mad and imagining it
Hope this helps
Moderatorsusan

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Posts: 899
Reply with quote  #4 
I echo Otty's words, way too much reliance on faliable dipsticks and urine analysis which are missing over 50% of infections. GPs are looking for a single causal bacterium whereas most infections these days are polymicrobial (i.e. Made up of one that one bacteria) and you are left with a sample test that states mixed growth and therefore discarded. You may want to consider a private test which the COB office can give you details of which cultures for a longer period of time.

I'd also look at your age. Are you going through Menopause or have been through menopause. Did symptoms restart during this time? lack of oestrogen during the peri, menopausal and post menopausal years causing recurrent UTIS is horribly common. This can cause vaginal dryness and a change in the PH of the vagina allowing bacteria to flourish.

Oestrogen is needed for the vagina to maintain its natural flora andlubrication. Interestingly, the bladder also needs oestrogen and some people see a reduction in pain after adding this hormone. Oestrogen also has natural antibacterial properties particularly against e coli infections and in studies increasing the levels of
oestrogen in the vagina has a beneficial effect on the bladder as the wall between the bladder and vagina is very thin and by plumping up this wall, the bladder becomes strong and is able to fight off infection better. Obviously with any HRT treatment, you must take into account any family history of cancer but I'm aware of
gynaecologists who will prescribe local HRT such as Vagifem as it is so localised to patients with a history of breast cancer for example.

Mirabegron is one of the newer treatments on the market for Overactive Bladder. It should work fairly quickly after a few weeks. I assume your urologist has carried out a flow test to check you actually do have overactive bladder? If not, I'd ask them to do this first before having a cystoscopy. If you do go ahead with the cystocopy make sure your specialist covers you with abs after the treatment to prevent any post op infection.

Don't despair, you have several avenues to pursue and I'd look at these. Do your own research, don't just rely on the men in white coats, increasingly we need to educate them especially if they are not listening to their patients and their symptoms.

Wishing you better health for 2017.
GeorgieGirl

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Posts: 17
Reply with quote  #5 
Thank you for your thoughts. Some interesting things which I will certainly look into.
I am on HRT after suffering extreme dryness and irritation. I also use Vagifem three times a week. Problems with my bladder started some time after I resolved that problem.
I do have a flow chart to complete before the cystoscopy.
I did not realise the Mirabregon took several weeks to work. It has only been 10 days, so I will try to be optimistic.
I will take all your advice on board.
Many thanks
Rosey

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Posts: 7
Reply with quote  #6 
Hi Georgiegirl,
I think generally advice for Betmiga/Mirabegron is to take it for a couple of months to really test it out.  It is one of the newer drugs for overactive bladder - some of the previous ones like Vesicare and Detrusitol lots of people stop taking because of dry mouth and dry eyes amongst other side effects, and basically lack of effectiveness.    As said above, everyone varies so definitely worth persevering a while with Betmiga.   After nearly 2 years I have given up on it.     Hope it turns out you don't have overactive bladder, it seems to be something of a mystery.   If we don't know what causes it, clearly not in a good position to really fix it.
Bladder Health UK is a really helpful organisation, and good source of info - hope some of it helps you and that you find something that works for you.  
Rosey
lavessie

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Posts: 2
Reply with quote  #7 
Hello

I am new to this "chatting on line" so I am hoping that I am doing this property.
Have had urine infections for the past 6 years together with occasional bowel incontinence! I believe there is a link between the two.  So I am trying very hard to get this incontinence manageable as I do believe they are a result of my urine infections.  I am on antibiotics for the UTI's, but I have just purchased D-Mannose tablets as I would like to avoid antibiotics if I can.  I have not been told what bacteria or "bug" I have and I have asked to be referred to a urologist.
Bowel incontinence is not talked as often as bladder incontinence ? but its a real problem.
Are any sufferers in my situation and what would they advise ???

ModeratorKate

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Posts: 1,611
Reply with quote  #8 
Hello lavessie
Welcome to our Forum , I am sure you will find much to support you in your search with endeavouring to mange this dreadful dis-ease.

As we are all so different it is very frustrating, as what can help one person will be a nightmare for someone else.

Yes both Bowel and bladder incontinence are closely related as particularly in the female they are very close.

Could I suggest that you contact 'The Bladder Heath UK' 0121 702 0820 ( see top of page) and if you become a Member they will send you a joining pack and quarterly magazine full of info, but you will also have so much more access to support . contacts etc (which is more than we can hope to cover here on the Forum)

In the meantime.Here is the link to the IBS network 

I would hope  our members on here may reply also.

Do keep posting and asking, we will always listen

Kind regards
Kate

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