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ModeratorKate

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Reply with quote  #691 
Hello Elanaoli.

Thank you for re posting on our Forums, but sorry to read of your Husbands unfortunate bike accident, hope it will recover well and will then relieve you of the added stress.

The more we discover and the more we can help each other, gives us all ideas to help ourselves.

I found these two links that may offer further assistance, if you are a member of BHUK, they have a information they can send you regarding Cimetidine, which you will read in the BHUK link.

http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/oral-medications

http://www.dailymail.co.uk/health/article-3621558/The-painful-condition-s-ruining-sex-lives-thousands-women-Undiagnosed-problem-leaves-unable-wear-underwear-sit-down.html

I also wonder if you could maybe sit on one of those doughnut rings, to ease the pressure when driving.

Do keep us posted. kind regards
Kate


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elanaoali

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Reply with quote  #692 
Dear Kate 

Thank you replying to my post and the suggestions. I have found a neck pillow which I using to sit on. I made an appointment with my local doctors to see if they can suggest anything to help with the uncomfortable feeling I am having. 

Will keep your posted. 

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Jermiah 29:11
Bowie1

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Reply with quote  #693 
Hi Dee,
Like all of us who suffer with IC, at times the problems we suffer can feel unbearable.
I was particularly taken by your post, as you have been through so much with your health and yet you are kind enough to offer a shoulder to others. You are an inspiration to others, and this site clearly attracts wonderful people who support one another and keep us all focused on trying to get better and helping fellow sufferers.
Thank you.
Bowie
gabifrancesrose

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Reply with quote  #694 
Hello all,

I am 27 and have just been diagnosed with IC after four years of suffering through the symptoms. The posts on this forum have really resonated with me and thank you to everyone out there giving great advice, it really helps.
I haven't started any long term treatments yet but have found the leaflets​ provided by bladder health UK really great.
I have read that diet plays a large part in managing symptoms and would love to know if anyone could recommend a suitable nutritionist in the north london area, preferably Islington. Please pm me with details.
I would also love to meet up with a support group in the north London area, feeling a bit alone and would love to chat!
X Gabby

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Gabby 
Moderatorsusan

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Reply with quote  #695 
Hi Gabbi

Please pm me and I can send you details of a great nutritionist based in London who has worked with BHUK and a number of their members. There is a north London meet up group so if you call the BHUK office they can give you details they meet monthly and usually at least one Saturday in 3 for those who work.
gabifrancesrose

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Reply with quote  #696 
Hi Susan, just sent you a pm. Thanks!
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Gabby 
tracykm66

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Reply with quote  #697 
Hi I am new to this site after continuous uti's I was finally diagnosed with cystitis cystica does anyone know what this is as I have looked online and it's not very clear some sites say it can turn into bladder cancer which has scared me quite a bit
ModeratorKate

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Reply with quote  #698 
Hi tracykm66

I answered your similar post on other thread, whilst it is always good to research and read, it can also be very scary , as you have found, so please do contact our advice line for extra assistance.

Regards 
Kate

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Martink

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Reply with quote  #699 
Hi All

Well i have now had my 5th bladder Op in 2 years the first being in Aug 15 in which i was told that i have got a problem with my prostrate and bladder, after that first op i could not urinate and therefore the Recovery nurses decided to put a catheter into me (my first experience) and then told after a over night stay with a catheter i could go home. my Second bladder op was a Turps 3 moths later and spent almost a month in hospital after the op as i was bleed ing quite heavily and sent home after that, then had a mini turp in June last year (2016) followed my a cystoscopy (under GA), then i was told that would be using disposable catheters from then onwards.
my 4th one was in Jan 2017 which went ok, then in Early October i tried several time to put a catheter into my bladder with no success at all and made my way back to my local A & E where they decided straight away to recatheterise me (Indwelling) and have had blockages and then had a Cystoscopy under a GA on the 19th Oct.
i always get bladder spasms when i have a indwelling catheters inserted and some bleeding too with small bits of skin in the day or night bags.
so back to the catheters i am now using lofric tiemann catheters because i have been told by the consultant that i have a mild bladder neck over hang.

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M.E. Keegan
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Reply with quote  #700 
I have just been recently diagnosed with Ic. I have had Sjögren's syndrome now for quite some time, wondering if the IC is just a progression of the sjogrens. I had a uti in January when I was out of the country. I was pretty ill, but thought I had got it covered. For the last 4 weeks I have been following the diet that I got in the pack from bladder health UK. I have noticed a big difference so far. I have only drank water or milk for the last 4 weeks, and have eaten very plain food. I am hoping to be able to try adding some other items in to find out what my triggers are. I notice that exercise (even gentle) seems to trigger a flare. In the testing for this I had a internal ultrasound and they managed to put my pelvic floor into spasm. I have been attending a physio and I am religiously doing all of the exercises twice daily. It is all just so exhausting dealing with the IC and the sjogrens symptoms. Hope to find out tips from other sufferers.
Poppychops

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Reply with quote  #701 
OMG ,can't believe I have found this group .3/ half years I've been going through this .ive never felt so alone in my life . My family & friends must be sick to the back teeth of listening to me go over and over my pbs .i thought I was the only woman in the world with this problem .the dispare is overwhelming. I am now taking elmiron and have weekly installation! Not sure if that's the right word lol . It works 80 percent of the time . I have now got to have scans on my liver kidney and gallbladder. I have constipation and piles !! Because of the pain killers . But hey ho I've found this group I could dance round the room if I didn't think I would pee myself 😬
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J.curtis
elanaoali

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Reply with quote  #702 
Quote:
Originally Posted by Poppychops
OMG ,can't believe I have found this group .3/ half years I've been going through this .ive never felt so alone in my life . My family & friends must be sick to the back teeth of listening to me go over and over my pbs .i thought I was the only woman in the world with this problem .the dispare is overwhelming. I am now taking elmiron and have weekly installation! Not sure if that's the right word lol . It works 80 percent of the time . I have now got to have scans on my liver kidney and gallbladder. I have constipation and piles !! Because of the pain killers . But hey ho I've found this group I could dance round the room if I didn't think I would pee myself 😬


Glad we could be there for you.. 

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Jermiah 29:11
heathwhit

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Reply with quote  #703 
Hi surprised your hospital did't give you details of bladder health.Anyway welcome to our forums , you will find lots of help and information on here.
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H.M Whitworth
Firefly

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Reply with quote  #704 
Hi Poppychops

I just wanted to say "a big welcome to the forums!" There are lots of lovely people on here who will offer you so much support! Have you joined Bladder Health UK as a member so that you can receive the magazine? They might also have a local group in your area where you can go and meet other sufferers face to face.

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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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