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lala93

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Reply with quote  #706 
Hi guys,

I stumbled across this forum the other night and have found it very helpful. I am 24, nearly 25 and have suffered from bladder issues for as long as I can re
I had my first UTI at 18 months old and was under the care of the urology department until I was 4 years old. I was tested for bladder reflux which came back negative but the doctors found I have different sized kidney valves (not sure if that means anything!)

Since being small I’ve had very bad bladder pain and the most awful feeling after going to the bathroom. I used to think it was normal and was relieved when it went away when I was 12/13. Unfortunately the pain came back about 4 years ago, along with the awful feeling after using the bathroom and now urgency issues too. I have been tested for UTIs several times, all with negative results. I was referred to the urologist clinic again last year and was told I was likely to have IC. However after I had tests I was told by a different dismissive doctor I was fine, had no problems and to drink cranberry juice. I was mortified, and so embarrassed I never went back to see my doctor.

The pain and urgency has gotten worse this last year so I’m going back to my doctors on Wednesday and I’m determined not to be fobbed off again!
ModeratorKate

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Reply with quote  #707 
Hello lala93
"However after I had tests I was told by a different dismissive doctor I was fine, had no problems and to drink cranberry juice. I was mortified, and so embarrassed I never went back to see my doctor. ".


Sadly it is unhelpful, when our health professionals dismiss our symptoms, when we know it better than anyone else.

Welcome to our Forum,  so pleased you have found the Forum helpful. There is indeed so much GOOD advice within, and by using the Search button at the top, you will find much to assist you , in helping you find those with similar symptoms,with many replies particularly from Moderator Susan who has answered in loads of details.

Also do please contact and consider joining BHUK, not only will they send you a Welcome pack, also one especially for your Doctor to read,also, you will have access to even more information and support.

Here is a one reply from an earlier posting, that may offer some advice.

You also need to look at your diet whilst you have these infections. Sugar will feed the bacteria so try to go low sugar (and that includes fruit) as long as you can.  Cut back on caffeine and fizzy drinks and avoid alcohol (again for the high sugar content).  Don't even think about fruit juices or the dreaded Cranberry Juice as its extremely acidic and full of sugar.  Its really dull but by starving the sugar out of your system you are starving the infection leaving it very little to feed on.  
You could also try an antihistamine as the mast cells we produce when tense or stressed are also food for bacteria and by taking the AH you again starve their food supply.
Hope some of this advice is of help.  If this continues go back to your GP with your results and ask for long term abs.  If he cannot help, contact the BHUK office who can provide you with information about specialists that can be seen on the NHS or privately treating these types of infections.

http://www.greenmedinfo.com/blog/grapefruit-seeds-treat-antibiotic-resistant-utis?page=2

http://www.life-enthusiast.com/citricidal-grapefruit-seed-extract-a-5121.html

http://www.remedy-bladder-infection.com/oregano.html
info for lots of utis/inflamation
I’d have a good read of these. If you are getting a lot of infections then the actual mechanics of an infection can set up a cycle of chronic inflammation as the bladder never truly heals and reduces from the inflammatory response to bacterial infection.

http://bladder-help.com/inflammation-underlying-problem-chronic-disease/

http://bladder-help.com/tips-tackling-inflammation/

Do keep posting, we will always listen and truly understand.

Kind regards
Kate









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Jessica19

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Reply with quote  #708 
Hi Guys, 

I stumbled onto this forum today and I'm glad to have found other people going through what I am. I am nineteen years old and I have had reoccurant UTIS since I was sixteen. At first, these were continuously diagnosed as bladder infections, however, after TWO YEARS of being given Trimethoprim and Nitrofurantoin, the doctors realized that it wasn't bladder infections but instead just reoccurant UTIS. It is only recently that I am getting treatment for IC and as a young person going through this it is hard to deal with as it does hinder me socially. I am currently going through the 12-week treatment where they put the antibiotics up your urethra via catheter and I have already had a camera up there. SUCH FUN. Strangely, I don't mind it though and I'm kind of relieved. It got to the point where I was undiagnosed for so long and in so much pain that I'd literally have them do anything at this point there was one night where I shouted to my ex-partner 'CMON JUST STICK A CAMERA UP THERE ALREADY'. I'm sure some of you can relate. Anyway, I just want to be connected with people whilst I'm going through this and am wondering if there's anyone around my age that is going through the same thing or anyone receiving the same treatment? Besides everything else, I am a university student who wishes to work in television production and I love a chat. I look forward to hearing from you. 

Jess
pamirwin

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Posts: 4
Reply with quote  #709 
I so understand your, I have IC for 6 months and the pain and everything that goes with it is driving me mad.  I so with dr and some nurses were a bit more understanding if they only new how bad this is.  I take mirabegron for spasms and pressure its not 100 percent for pressure pain  Other than that tramadol an opiod for pain.  I hope to be going to pain management soon and find a new cure for bladder pressure.  Good luck to you.

pe

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susanh

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Reply with quote  #710 
Hi everyone my name is Sue & so glad to have found this.I was diagnosed with IC in 2015 by a consultant Urologist who I went to see in  sheer desperation because of infection upon infection following a stroke in 2012. Had cystoscopy, cystomettogram & was told nerve damage on stroke side of bladder causing pooling of urine etc. Not repeated infection, just one that never cleared up mainly because GP's will NOT listen & realise that a 7 days course of antibiotics is a waste of time! I alternate monthly between Trimethoprinm & Nitrofurantoin at night. Also 4-6 weekly instillations of Illuaril. However things are really not improving. Still get painful bladder & main relief obtained by hot water bottle up between my legs ( not always convenient ) & co- Codamol. Paracetamol on its own useless. Had 2 attacks of IC in as many months mainly stress related. Do not care what they say it does affect! I feel Trimethoprim not doing what it should as I start to get very smelly urine when I am taking that. I am due to see  consultant again in a few weeks but very interested in the professor. I live in Essex. Any help & advice will be very gratefully receiveo
ModeratorKate

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Reply with quote  #711 
Hello suanh
Welcome to our Forum, sorry no one has been able to reply, but I do hope you will find much to benefit you in reading through several of the threads.
Particularly the Biofilm category, that has plenty of good advice re the Professor

Also do consider joining BHUK and if you wish, you could telephone the advice line, someone will always contact you, if the answerphone is on, as we are only a small office charity they will have loads more info and advice to help you..with info on the Prof etc.

Kind regards
Kate

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MrsA2018

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Posts: 8
Reply with quote  #712 
Hello - I am coming to the conclusion after various tests and a recent cystoscopy that I have IC. Hoping to get some diet and nutrition help. I was diagnosed with Graves Disease which is an autoimmune illness.I suspect this is contributing to the bladder pain. I want to be able to manage pain and avoid triggers, although not always possible.
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Rj

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Posts: 9
Reply with quote  #713 
Hi Jodie

I feel like I'm experiencing the same thing, it started in august this year where I just felt the urge to urinate however not much would come out all the time. At the time it started I was on holiday and just assumed it might be a UTI. When I got back to the UK I went to the doctors and they said there's no sign of infection. I also had a blood test done which came back Normal and an ultra sound which also came back normal. My symptom are literally just pressure down below which makes me feel like I need the toilet all the time when I don't. I don't experience and pain of burning but it's so uncomfortable to have to deal with, especially trying to fall asleep at night! I'm currently waiting to be reverent to a urogynocologist not sure how long that's going to take but the weird thing about my symptoms is that they're on and off. It probably lasts for about a week and a half or two weeks and then goes for a week maybe and comes back. So I basically get it every month and I'm not sure if it's related to my period.
MrsA2018

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Reply with quote  #714 
You sound simular to me........
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elanaoali

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Posts: 28
Reply with quote  #715 
Your pattern of flare ups sounds like the pattern I started with 6 years ago. For me it was mid cycle figured out by a good GPs. This is when not like you I had pain in my bladder. But frequently is a symptom of Intersial cystics or as called European rename painful bladder syndrome.
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Jermiah 29:11
Rj

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Posts: 9
Reply with quote  #716 
Do you think even though there's no pain it could be IC? Also have you been able to treat your symptoms?
MrsA2018

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Posts: 8
Reply with quote  #717 
It hasnt been 'formally diagnosed' as IC but I use twitter now and there is alot of patients complaining about unreliable UTI testing within the NHS. I have no option but to see Dr Ali privately as he does broth culture testing for chronic infections. Another patient recommended him. To see him, I will need to borrow money [frown]

If I am proven to have a bacteria infection, then I feel it is a case of medical negligence or pubic law and access to treatment.

tel law society 0207 242 1222. 

Legal Aid Helpline 0345 345 43 45


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elanaoali

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Posts: 28
Reply with quote  #718 
Quote:
Originally Posted by MrsA2018
It hasnt been 'formally diagnosed' as IC but I use twitter now and there is alot of patients complaining about unreliable UTI testing within the NHS. I have no option but to see Dr Ali privately as he does broth culture testing for chronic infections. Another patient recommended him.

If I am proven to have a bacteria infection, then I feel it is a case of medical negligence.  


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Jermiah 29:11
elanaoali

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Posts: 28
Reply with quote  #719 
Take mine a great GP surgery with pharmacy attached. I am able to get appointments when I need them. Scored very high on their inspection and paired with two other surgeries making a triad of good GP services. Five minutes by foot from my house. Local urlogy clinic at local hospital 10 minutes drive parking on street always necessary though. Hospital parking really bad. Photos and art work on the walls with a panio for anyone to play. Nurses professional but friendly.
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Jermiah 29:11
Mdean

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Posts: 2
Reply with quote  #720 
Sounds very similar to what I have, therefore I would be most interested to see how your broth culture turns out pls? I have needed the loo (no pain) on and off now for 10 years (cystoscopies, antibiotics, diet, physio etc), only antidepressants have helped slightly. Thank you.
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