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Lou233

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Posts: 32
Reply with quote  #1 
Hi

I'm currently having cystistat instills and have had the 4th today but I'm getting worse.

After the first one I was a lot worse than before is started with a lot more pain and frequency and generally feeling sore and had 1 day when I couldn't leave the house. After the second it wasn't quite as bad but the pain in my bladder and urethra was still a lot worse than before I started. After the third I had 2 days of the worst pain I've ever had with this, even from when I first started with IC. My bladder felt like a burning ball of fire in the bottom of my stomach and I was really worried I'd done something irreversible. It gradually subsided during the week although the bladder pain was still a lot worse than before i started. I've had the 4th this morning and have a burning bladder again although frequency is not too bad. Usually if my pain was bad frequency and urgency would also be bad but they're not as bad as the pain.

My head was telling me not to go this morning as its making the pain and general soreness so much worse, but the nurse said I should complete the course of 6 as some patients only feel the difference after 5 or 6.

Has anyone had experience where they got better after being worse to start with ? I'm worried though if I continue that I'm going to make it a lot worse permanently and not get back to where I was before if it doesn't work.

Thanks
xx
ModeratorKate

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Reply with quote  #2 
Hello Lou233
I am so sorry to read of your worsening symptoms. I would advise you to speak with your Doctor or Consultant to hopefully obtain some reassurance for yourself.

In the meantime untill hopefully others will respond here is what Forum member Chrysalis has to say re treatment,replying to another Forum member, and below that is info taken from our website.


http://cobf.websitetoolbox.com/post/cystistat-today-8391126?pid=1297031430&highlight=cystistat+instills

Hi Georgie Girl, I don't think I felt anything like that when I had my first instillation, I do however get a very metal type taste in my mouth until I release the urine. I try to hold the liquid in my bladder for approximately 2 hours to give it the best possible chance of it working. Please be aware that instillations need time to work, and you don't usually see any difference until about your 5th or 6th one. I still have them every 2 months, and they are more like maintenance now for me, and I believe that my bladder has improved as a result if having them. Two years later I am still having them. I always empty my bladder and give a sample at the hospital rather than doing it before or taking a sample with me, that way I know my bladder is completely empty before the procedure takes place.
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http://bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/intravesical-medications/cystistat
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Kindest regards and do please keep us up to date, with hopefully some relief for you soon.

Kate

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Kaysmiles

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Posts: 5
Reply with quote  #3 
Hi Lou 233

What is the name of your installation?
Kay
Kiwi_Fairy

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Posts: 90
Reply with quote  #4 
Yes cystastat (sorry can’t remeber how to spell it) made my symptoms a lot worse, my consultant stoped it after the 7th/8th attempt x
Lou233

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Posts: 32
Reply with quote  #5 
Thanks all, it's a bit better this morning but I haven't been out anywhere yet.

I don't really have much confidence in the consultants as I've seen a different one every time I've been (I've asked if I can see the same one each time and they've said it's not possible) and they've never read my notes so I'm starting from scratch each time I go. I first went through the NHS again (after been treated by DrA for about 2 years) in March this year and was supposed to have a follow up appt in June but even after a lot of chasing on the phone, didn't get one until the beginning of December.

If this doesn't work I think I'm looking at either acupuncture and Chinese medicine or trying to see the Professor to try antibiotics again, but I'm not sure at the moment which to try next......

I'm sure mine is infection based as I had a lot when I was younger and then in 2013 had a UTI which just never got better and I've had these symptoms ever since (although they're now IC symptoms rather than uti).

Any advice appreciated, thanks all
x
Lou233

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Posts: 32
Reply with quote  #6 
Quote:
Originally Posted by Kaysmiles
Hi Lou 233

What is the name of your installation?
Kay


Hi Kay

It's Cystistat instills that I'm having

x
Twiglet21

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Posts: 35
Reply with quote  #7 
I have been having Cystistat instillations monthly for 2 years. I found it didn't seem to work very well at first but when I got to instillation 5 of the first 6 weekly ones it started to get better. I did find the catheter irritated my bladder for a couple of days after each instill but that has got better over time. I am able to hold each instill in for the recommended 2 hours as that seems to make the effects last much longer. I also take Prelief alongside the instills with each meal and the combination of Cystistat and Prelief works pretty well. It doesn't take the bladder pain away completely but it is very much reduced and more manageable,. Keep at it with the instills as I have found it really works for me.
chrysalis

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Posts: 151
Reply with quote  #8 
Hi Chryalis here,

Still having bladder installation 3 years going on now, and still continuing every 2 months. I can now eat and drink just about anything I want, with very few exceptions, without pain. You have to give instillations time, they aren’t going to cure you overnight, you have to preserve, stick to the IC diet for a long time, and give your bladder time to recover and heal itself, just like you would any other organ in your body. It’s a raw piece of flesh right now, and it’s reacts to anything acidic going into it, making it scream with pain.

I have used Prelief tablets with food for about 2 years which I found have been a “godsend” as they help to turn acidic food to alkaline, thus when they reach the bladder as urine, it doesn’t sting.

I have been there when my bladder has stung like a knife inside me, but I decided it was not going to ruin my life, read everything you can get on IC, try treatments, try Prelief, Buscopan, take COD liver oil, Glucosome, probiotics and most of all get a positive attutide tbat you are going to beat this disease, and if you do, then often mind over matter conquers many things,
.
Good Luck 😊👍

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heathwhit

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Posts: 315
Reply with quote  #9 
Hello chrysalys,i wish i was more loke you i get frightened to take things in case they make thinhs eorse.i somehow don't seem to fit the normal i c pattern as my pain is mainly vulval with just slight bladder discomfort when i need to wee it is an awful pain in my vulval area snd not my bladder,i sting and burn afterwards and do not get much relief ,this has been ongoing for six months after my cystoscopy,the urologist wants me to try elmiron but i am worried about side effects .i have dreadful constipation and if i take anything i get dreadful tummy pains agter i have been,i am uptight like s drum with all this my heart is jumping around this morning i live my life in a constant panic.Do you think buscopan would help my bowels but would it make my vulval symptons wotse,i skso get bad rectal pain,will.my nightmare ever end,could not face onstills too sore and worried about more infections my poor bladder could not take any more.Heather.
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Lou233

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Posts: 32
Reply with quote  #10 
Thanks Chrysalis, I've stuck with it and had the 6th instill last Friday, generally I've been worse than before they started and after a couple of days after each instill, my bladder has felt really sore and inflamed and has hurt like it hasn't before. Yesterday and today though it has felt a bit better and I haven't had the real soreness as yet after the one on Friday. As things haven't improved the nurse has stopped it and referred me back to the consultant, but I'm going to have her a ring and ask to continue if I don't get the really bad pain after this one.

The consultant originally said I should have ten weekly but the nurse said they don't usually do more than 6. What's anyone else's experience with this? Is 6 enough to know whether it'll work?

Coincidentally, over Xmas I read 2 books and am now on my third. I'm doing the Amrit Wills alkalising diet at the moment but I just can't do vegetables for breakfast! It was tough doing it over Xmas but it's getting a little easier now. I'm also starting acupuncture and am going for allergy testing next Friday.

I'm determined that this isn't going to beat me and my goal is to be able to fly to take my daughter abroad.

I'm sure my IC is infection linked and I've tried treatment with Dr A and although it improved a lot, it was always still there and still no where near normal.. I'm on a low dose antibiotic, but don't know whether to try Chinese medicine next if the instills don't work or whether to see the London Professor with the risk that I make it worse messing about with antibiotics again. Any thoughts would be very welcome.
Thanks x

P.s history is a lot of utis when younger which all cleared up ok until I was pregnant 8 years ago when had a UTI but then developed IC symptoms for rest of pregnancy. IC symptoms went after giving birth but returned 2.5 years later (so 4.5 years ago) after a UTI that just never got better and gradually changed into IC symptoms. I don't have any other of the IC related issues such as fibromyalgia, ibs etc

chrysalis

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Posts: 151
Reply with quote  #11 
Hi, Heather I think if you are in pain, then it’s worth trying anything to try and get out if it. If you don’t try things because you are scared to, you are never going know. Off the subject, I have just come down with an allergic rash which has driven me crazy for the last 2 weeks. I have put it down to a change in washing detergent, so I decided to do something about it, changed to non biological detergent, washed everything in my cupboard I could, took any itch creams, and have even got steroids from the doctor, which in some ironic way have helped the IC, and since I have taken them I have had no IC issues at all, been able to eat everything and anything I have wanted, strange ? One illness helping another !

What I am trying to get at is doctors can advise, but it really up to you to do something about it, you have to take the plunge and try these remedies that people are offering you, because if you don’t you are never ever going to get better. Determination, a willingness to try suggested things, and a positive attitude to I can instead I can’t. Is needed. A lot of illnesses stem from stress, and mental attitude, try and get positive and get better. 👍

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