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heathwhit

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Posts: 189
Reply with quote  #1 
Omg i am sick of feeling i want to wee, not in my bladder but in all my lady bits urethal burning snd everywhere in that area, don't seem to get much relief want to ho again and agsin. I have never experienced snything like this in my lifeand hsve ic for many years with no bladder pain just burning after going.The cystoscopy has given me all these horrible symptons I think i may have vulvadinia would that make me want to wee.I also have slight bladder discomfort now, i am worried this will never settle to my old ic the one i know the one i can live with.i am really worried for my mental health and have a lot to discuss with the urologist next month..i am really worried i have one of those biofilms you all talk about my husband says i am obsessed with this which i am, my cystoscopy showed little wrong some iimflammation which they said MIGHT be the course of my symptons how do i get this biofilm obsessions out of my mind.Heather.

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mishamat

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Reply with quote  #2 
Hi Heather, 

Sorry you're going through this.  I also get burning throughout the vulval area, not just the urethra, when I have a bad flare.  For me the most helpful thing is to put an ice pack down there for a while - it's particularly good after going to the loo if that sets you off.   After struggling to find a pack of a suitable size and trying to improvise with stuff from the freezer, I found a product called feme pads - you can buy them on amazon - that are designed for women who have just given birth, but they're brilliant for easing all kinds of pain 'down there'.   You can buy disposable covers for them too. 

What are you taking for pain relief?  Drugs that can help calm down nerve type pain include amitryptilline (spelling?), gabapentin and pregabalin.  They all have lots of potential side effects but worth chatting to your GP about what might be suitable if you're not already taking something.   I couldn't get on with amitrip. as it actually made it hard for me to wee at all at night - it can cause urinary retention - but in my first year of PBS / IC I was on pregabalin for about 9 months and it helped so much.  Took a while to build up but it dulled the pain down below, though it didn't get rid of the constant ' need to go' sensation.  

I'm no longer on that as things calmed down for me after instillations.  Have had a flare recently though and was reaching for the ice packs again.  It really is horrendous pain - as I've told people, I'd rather have a recurrence of the pain I had from a disc prolapse and sciatica than bladder / urethral pain!   By the way, I wouldn't rule out instillations - they can be a huge help, and with a skilled nurse putting in a catheter (they're usually special, v. thin ones) it shouldn't worsen soreness down below.


heathwhit

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Posts: 189
Reply with quote  #3 
Thank you for your reply, i have tried amatriptilone but they made me dream a lot i hate taking meds nothing seems to suit me.Did you find the instills helped with your weeing problem it is the constant weeing problem that upsets me the most, i didn't have this problem as bad as this before my cystoscopy.Will get some pads from amazon they sound a good idea better than frozen peas.Kindest regards Heather.

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H.M Whitworth
mishamat

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Posts: 3
Reply with quote  #4 
Hi Heather,  yes the instillations have calmed my bladder down generally and so helped with all the symptoms.  For me the pain is the main thing, but when I'm flaring and in pain I will also get a feeling of constantly needing to go to the loo but getting absolutely no relief when I do go.  It's a maddening sensation - literally! - so I can really empathize with what you're going through. 

For me instillations didn't work at once - I noticed after 4 or 5 that I was getting a lot more good days, and things felt calmer, and then I found I could get away with eating and drinking certain things that had been a problem for my bladder before, and after a while I was hardly noticing my bladder any more.  As I said though, I have had a flare more recently even though I still have an instillation every month, so my bladder certainly isn't completely under control. 

If needing to wee all the time is the main problem for you, not pain, I honestly think it would be worth discussing with your GP drugs that can relax the bladder muscle and reduce the urge to go.  I was prescribed betmiga by a urologist for the constant needing to go.  I have to be honest and say I didn't take it, because I was worried about urinary retention after my amitriptyline experience, and also because pain always been the bigger problem for me; but if needing to wee all the time is more of an issue for you, then that's what these drugs are for.  

I do take drugs when I need to for pain - as well as the pregabalin I take codeine if I need it.  When I try and manage a flare without pain relief I always find it just gets worse and worse.  I think I tighten all my muscles down there in response and that can create a vicious circle, as tight pelvic floor muscles can contribute to the needing to go and to urinary urgency as well as causing more pain.  Trying to relax is so important - I like to lie down and do some gentle yoga stretches with a hot water bottle on my stomach and, if necessary, an ice pack down below!

Did you have a cystoscopy with hydrodistention, under anaesthetic?  I've heard a few stories of these really stirring up people's symptoms for quite a while, but they should calm down again in time.  I've only had a flexible cystoscopy under local anaesthetic and would not want the other kind. It's horrible though knowing that a medical procedure has made things worse for you.  

I wondered about biofilm infections when my symptoms first started and I read about them,  but I'd only ever had one UTI, and that was years ago, so I didn't think it really matched up in my case.  I don't know about yours obviously but I think there's a lot of info. on this site about treatment for biofilm infections.  Have you had any antibiotics since the cystoscopy?

 



heathwhit

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Posts: 189
Reply with quote  #5 
Oh bless you i see the urologist next month and will ask sbout betmiga.Should never have had the cystoscopy as i had no bladder pain all vuval.Yes i had the works hydro and biopsy and since then all the weeing plus the vulval pain.No abs always negative samples but private one showed infection, the doctor will pnly go by nhs and says abs could make things worse and knowing my reaction to them he may be right.Thanks for all your helpful advice.kindest regatds.Heather.
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H.M Whitworth
annalouise

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Posts: 16
Reply with quote  #6 
Hi Heather,

I can completely sympathise, those symptoms are dreadful and relentless, it really does start to take its toll. I also often struggle to cope with it all.

Have you been tested for a yeast infection at all? I have IC, and also chronic thrush, and when I first developed these conditions I had a constant burning sensation (from the thrush) and a constant need to go to the toilet (from the IC). I then had a vaginal swab done and they discovered I had a profuse yeast infection, and later I was diagnosed with IC, so in fact my symptoms are due to two different conditions. It might be worth having that conversation with your GP, particularly if you have been taking lots of antibiotics.

I wouldn't completely rule our instillations if they are being offered to you, perhaps talk through your fears about them with your Urologist and see if they can offer any reassurance?  I understand that they are often very effective and have completely changed some peoples' lives - something which I think most of us dream of! I had my first instillation on Monday and it was nowhere near as bad as I thought it was going to be. I have been in so much pain recently so I couldn't bear the thought of having something so invasive done and I was a nervous wreck before they did it. But its done now and the pain was bearable and totally worth it to be trying out some treatment. It has left me with some irritation but nothing compared to what I have been through already.

As mishamat has rightly pointed out there are lots of different drugs to try for both frequency and pain, you should speak to your Urologist/GP about these to see if you can try some. My understanding is that people often end up with a combination of different treatments to help their symptoms and it is unfortunately a case of trial and error to see what works for you. I am on Betmiga and Amitriptyline and things have finally started to calm down for me after things got really bad after my cystoscopy.

Anna x

annalouise

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Posts: 16
Reply with quote  #7 
Mishamat - you are a total lifesaver by mentioning feme pads! Thank you! I have the most dreadful burning and soreness from a thrush infection no one seems to be able to get rid and that product sounds perfect.

Your posts are really helpful, I felt better reading through them myself even though they were for someone else! 
mishamat

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Posts: 3
Reply with quote  #8 
Hi Heather,  fingers crossed that things will calm down for you and that your next urologist appointment will be helpful. 

Anna, I really hope the instillations help you as they have me.  It's a good feeling to know that these nice, soothing substances are going directly into the bladder, isn't it!   I had a treatment on Tuesday - I have them monthly now - and I was sure I could feel my bladder being calmed and healed as I held the instillation in.  Probably just imagination, but the last couple of days have been really good for me after an on-off flare over the past month or so.   It's probably not a coincidence that I wasn't able to have my treatment last month - it seems like I can't go too long without one before the symptoms flare again.  

Hope the feme pads help too. 
heathwhit

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Posts: 189
Reply with quote  #9 
Thank you for your helpful replies it is good that we have this forum to help each other with this miserable condition.I do not know if instills will help me as i do not suffer from actual bladder pain, i have had some discomfort bladder wise since the cystoscopy which wasn't there before my pain is all vulval and feeling of wanting to wee.Anyway i will hsve dicuss all this with the urologist and will get the feme pads.kindest regards Heather.

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H.M Whitworth
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