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Blueangel

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Reply with quote  #1 
I had my 1st instill today and have some slight bleeding and feel very sore ,
is this normal after instills ?
Moderator_Jen

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Reply with quote  #2 
I am extremely sore after every instil, but I never experienced any obvious bleeding afterwards - although I did have blood in my urine.

I'd recommend that you contact the nurse who administered the instills for advice. There is a qualified bladder nurse available to give advice via the Bladder Health UK helpline. Please call the office for further details x

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chrysalis

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Reply with quote  #3 
I really do think this can be up to who administers the instil. I have the most wonderful nurse, and feel very lucky. She uses a tiny minute catheter, and apart from feeling a pin prick (and she always tells me when it is going in) there is no pain, or blood.

There was an exception when she was off work sick, and another nurse did it. She hurt me and I told her so. The next day I had cystitis, which I never have, and had to go the doctors and get antibiotics.

I have bladder instillations every 2 months, and have found them very helpful, but if my nurse isn't there on that day, I won't let anyone else do them after that episode. I told my nurse when she came back about the episode and she shaked her head.

I think it's like when you have blood taken, some nurses know how to put the needle into your arm and you dont feel a thing, and some just stab you with it causing you pain.

Hope it works out for you, and you get a really good qualified nurse who knows what she is doing. 😊👍

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Blueangel

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Reply with quote  #4 
Hi chrysalis
Do you find it hurts to pee afterwards ?
Moderator_Jen

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Reply with quote  #5 
Yes, the first couple of voids after an instil makes my eyes water! It does reduce quite quickly though so if you are experiencing pain when voiding and bleeding still I would definitely recommend you see your GP asap as it sounds like you have an infection.
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Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

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Blueangel

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Posts: 132
Reply with quote  #6 
Glad to say it's easing off now... I'm very inflamed .Hoping it's easier next time! !!
heathwhit

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Posts: 212
Reply with quote  #7 
Hi blueangel, hope you don't mind me asking how long have you suffered with i c before they offered you instils.My nurse won't let me have them because my bladder has not settled after my cystoscopy, all i want is some relief.
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H.M Whitworth
Blueangel

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Posts: 132
Reply with quote  #8 
Hi Heather
I had IC for 10 to 11 years before I got instills.. You definitely don't want them until
your bladder has settled down from the cystostocopy. .

Sadly I've now got internal pain from it. My bladder is very painful up inside, if you don't have
internal bladder pain they won't help.
heathwhit

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Posts: 212
Reply with quote  #9 
HiBlueangel,Thanks for your reply abd advice i would not have had the bloody cystoscopy had iknown how it would affect me wanting to wee so much.I hope it will settle soon.I dohope your instils help you with your pain it must be hatd for you to live with your bladder problem..Thinking of you .Heather.


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H.M Whitworth
Blueangel

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Posts: 132
Reply with quote  #10 
I've spoken to the nurse on the ward where I had it done.
Has it's flared up all my symptoms they won't let me have any more.
heathwhit

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Posts: 212
Reply with quote  #11 
Oh no i am so sorry to hear that, is it the first time you have had instils,? Any suggestions as to what to fo for you next?i sm struggling to take amitrptiline at the moment.Best wishes Heather.o
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H.M Whitworth
Blueangel

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Posts: 132
Reply with quote  #12 
I've got to struggle on until November when I see the consultant again.
I've already been told there isn't any more that can be done for me.
I'm going to look for a different consultant, they shouldn't be allowed to leave you
in debilitating pain !! I can't take amitrytiline, makes me very ill.
heathwhit

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Posts: 212
Reply with quote  #13 
Oh so sorry hear that are you in constant painand can you manage some normal life? My pain and discomfort is mainly in the urethial area although i have felt some bladder discomfort since the cystoscopy, just feels like an infection to me, but cultures are clear if you can believe them.Can i ask in what form did amitriptiline make you ill.I hate taking any meds they all seem to make me feel worse.best wishes Heather.
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H.M Whitworth
Blueangel

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Posts: 132
Reply with quote  #14 
Hi Heather
I can't live a normal life as the pain is constant except for a day here and there.
My diet is terrible as nearly everything causes me to flare. Life isn't very nice like this,
I used to love my food but now every day is a constant round of sweet potato and a small amount of
cod, it's about all I can tolerate. I wish I had the constant weeing without the pain, I could cope with that, it's the pain that I can't cope with.

Amitryptiline made me feel on another planet. I was so groggy I didn't know what I was doing .
ModeratorKate

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Posts: 1,668
Reply with quote  #15 
Hi all
 Saw this post from last year, and blueangel there is a comment re AZO for pain relief, how thread may assist.

http://cobf.websitetoolbox.com/post/cystoscopy-with-hydrodistention-8246886?pid=1293441586&highlight=cystoscopy+hydro

"Emma belle as you are recovering from your procedure, I would suggest getting hold of some Azo Standard which is a urinary pain killer that essentially numbs the bladder. It can be purchased from Amazon and although it turns your pee an alarming shade of orange (you'll need to bleach the loo) it will help with the pain and hopefully allow things to settle. Rest as much as possible and don't beat yourself up. It will settle but your bladder has the most nerve endings of any organ in the body so will take its own sweet time to heal up."

 


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