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Teddy

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Posts: 8
Reply with quote  #1 
Hello Everyone
Im new to this but finding life very hard and lonely trying to cope with the bladder problems iv been having on and off for last 4 yrs
Spend alot of time on my own there are alot of tears to go with that.
Started with what i thought was urine infection 2 rounds aintibotics that did nothing but had constant bladder pressure but no pain when going to loo.
What followed was urologist being dismissive
Second opinion urogyn doing more test urodynamics rigid cystoscopy said no IC bladder looked fine but did stretch it which seem to help for while.
Now things are getting bad again Doctor at a lost really been giving usual meds amitriptyline oxibutynin vesicare also in perimenopause so have vagifem now HRT feel like drug machine
Did have infection recently white blood cells and blood in urine 2 lots Anitibotic now urine clear but still having burning and stabbing when pee and constant nag in bladder which wears me down.
Just reached out to pelvic floor therapist to see if could help said slight tightness and maybe slight prolaspe ? But after all the scans would thought they would off picked up on anything out of place
Not sure where to turn to next Do all the right diet things no acids caffeine bad foods not that i have much appitite but seem to not get anywhere with anything or anyone
Without some sort of diagnosis can get and treatment plan or help just told nothing wrong with bladder when there clearly is im in the hampshire area anybody have any ideas help recommend anybody that could help its very lonely suffering with these awful symtoms.
Sorry bout long post 😞
ModeratorKate

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Posts: 1,912
Reply with quote  #2 
Hello Teddy
Welcome to our Forum, am sorry to read of your ongoing symptoms.

As you say this dreadful dis-ease does make us feel so lonely, as we are all so different and react in a different way to medication etc.

However as you will see , you are not alone, and am sorry no one has felt able to reply.

Look through the different threads on here, this is just one I quickly found that may help
http://cobf.websitetoolbox.com/post/newly-diagnosed-with-ic-advice-appreciated-10140506?trail=15#3

http://cobf.websitetoolbox.com/post/confused-any-advice-8123600?trail=15#6

Also may I suggest that on Tuesday you telephone BHUK, they are so helpful and have a lot more info and advice they can offer you.






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Teddy

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Posts: 8
Reply with quote  #3 
Thank you for coming back to me
I am struggling with all this and not getting support from the medical world
They say nothing wrong with my bladder as no inflammation seen on ridged cystoscopy but something is not right at all 😪
I will contact the help line on Tuesday and look at the web sites you have sent
Thank you feels like im going mad 😥x
Clairejane

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Posts: 6
Reply with quote  #4 
Hello Teddy
I don’t come on this forum much anymore but when I get the emails with the latest topics sometimes I take a look. I just felt so sorry for you and felt I had to reply. Firstly the reason I don’t come on here anymore is because I am tons better than I was 2/3 years ago. I had repeated UTI’s since 2016 after having Botox in my bladder for overactive bladder. I first had the Botox in 2015 which worked wonderfully then had the top up in the Feb of 2016 after this I developed a urine infection which just couldn’t be shifted. After months and months of short courses of different antibiotics and also negative results many times from my GP, I was at my wits end. I tried everything diet, herbal medicine, Chinese herbal medicine I eventually went to see a Prof in London (I’m not sure if I’m allowed to mention his name so I won’t). Anyway to cut a very long story short even though I had been told by my GP the day before I saw the Prof that I had no infection when I saw him he analysed my fresh urine under a microscope and said I definitely had an infection. That was April 2018 and I have been with the prof since then on continuous antibiotics (a few changes along the way). Since December last year I have had no infection present so I have reduced my antibiotics to one a day (in Feb) and now for last 6 weeks I am just on hiprex. I am due to see the prof in July and hopefully I will remain infection free til then. Perhaps when you speak to the helpline ask for the fact sheets on the Professor and his work. I really hope you manage to get some help and from what I have found out along the way it’s us that need to be researching and more proactive because my GPs kept saying there was nothing wrong but I knew there was!! Wishing you lots of luck and take care xxx

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Claire Haslam
Teddy

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Posts: 8
Reply with quote  #5 
Thank you clairejane
How things stand at the moment im in a huge amount of pain
Doctor had sample yesterday said no infection but traces of blood.
Spent all of today trying to cope with the awful searing constant burning and nearly going thou roof when i wee which i can see traces of blood when i clean myself.
Do have a CT tommorow morning to see if any stones etc
Pain radiating round to my bum and lower back
Have spoken to lovely lady at BHUK today and shes sending me a pack regarding getting a better urine test done in London which the way thinks are thats the only route i had.
She mentioned the professor and another place bit out of my depth with this so good to hear that you have had success with this.
If your feel you are able could you mgs me with how this all works and how to go about going down this route feel like a fish outa water really so kind of you to get back to me and give me some hope x
Clairejane

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Posts: 6
Reply with quote  #6 
Hi Teddy yes sure I will send you a message. Xx
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Claire Haslam
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