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Chronic Pain / Interstitial Cystitis Blog

(16 Posts)
brokenbladder Sun 30-Oct-16 20:00:31

Hi everyone!

I've recently been diagnosed with Interstitial Cystitis and from looking through the archives on here, seems a lot of you sadly suffer from this as well.

I've found there is very little information out there, especially from UK based sufferers, so I've set up a blog to document my journey of chronic pain.

Hoping it might be of use to some of you smile

Simmi1 Mon 31-Oct-16 02:15:45

Fellow sufferer here - I don't yet have the official diagnosis but it looks like it's heading that way unfortunately. Thanks for the link to your blog which I read with interest. Wishing you well with your journey. Did your symptoms come on all of a sudden?

CelestialLight Mon 31-Oct-16 04:34:38

Thank you, I shall have a look.

joshlymanlover Mon 31-Oct-16 05:35:43

Hello!!! Another sufferer here although touch wood my symptoms are nothing like they were 10 years ago!!

AnnaFiveTowns Mon 31-Oct-16 06:29:31

I'm a fellow sufferer. Through mumsnet I found a (closed) Facebook group of women who are all sufferers and trying to push for better testing/treatment of uti s. There are some specialists who believe that IC doesn't really exist and it is, I'm fact, a deeply embedded (biofilm) infection that inadequate testing cannot detect.
One of the leading uti specialists in the country (Professor Malone Lee) will be on Radio 4 Woman's Hour at 10 am today talking about the problem, so it might be worth listening to this, or listening later on catch up.
The Facebook group is OBBI ( Occult Biofilm Bladder Infection) and as it is a secret group, you will need to request access. I have also just liked a facebook group who are campaigning for change with regards to this awful problem. I cant remember the name but I'll try to link it.
Chronic/ recurrent cystitis is horrific. It is very much a female problem and more research and funding is needed in this area.

AnnaFiveTowns Mon 31-Oct-16 06:35:53

Simmi1 Mon 31-Oct-16 07:02:05

This is really interesting. My situation is very unusual. I'm 40 and actually I've never had a UTI that I know of. However after the birth of my second child 13 months ago I developed terrible bowel problems. I tried everything to fix it but nothing worked. Finally 4 months ago the bowel symptoms improved but at the same time I developed bladder symptoms. I get pain and frequency but not all the time and never at night. Since June the bowel and bladder symptoms have alternated. My urologist found some redness in a cystoscopy and put me on a six week course of nurfloxacin. The symptoms did improve on nufloxacin (bowel got worse) but came back when I finished. I then did another 2 weeks of nurfloxacin and the same thing happened. All my urine samples come back clear. I asked the urologist why she doesn't think it's IC she said my bladder diaries aren't consistent with IC - and someone with IC wouldn't be able to hold 400-500 mls. I can quite easily when my bladder is not hurting. If it is I go every couple of hours for 150mls. At night I hold about 600mls. Urologist thinks it's either an infection or my bowel aggravating my bladder. Anyone have any thoughts? Sorry for high-jacking thread.

brokenbladder Mon 31-Oct-16 08:46:31

Simmi1 - I've had increased frequency all my life but put it down to the amount of fizzy drinks I consumed, it didn't cause me too many problems. In June, I woke up in horrific pain and that was the start of it. Never had a UTI, urine has always been clear. Had a cystoscopy with hydrodistention in August which showed my bladder to be inflamed with glomerations. The cystoscopy has made my symptoms ten times worse unfortunately. I'm told my bladder has a larger capacity than normal, my frequency comes and goes and I don't get up at night to urinate. My main complaint is pain. My Urologist says there's no doubt I have IC but of course I have my doubts because it's so poorly understood. Your Urologist seems to conflict with mine regarding bladder capacity which doesn't surprise me as no one Urologist says the same thing!
In my opinion, if your symptoms improved with antibiotics but worsened after stopping them, there could be an infection and you might benefit from longer term antibiotics. You could well have an inbedded infection like AnnaFiveTowns speaks about. Have you been on the Cystitis and Overactive Bladder Foundation forum? There is a very good thread on there about imbedded infections. I find that we have to become our own doctors with this, do our research and go armed with answers to the Urologists and tell them what we want as they don't seem to have much idea!

AnnaFiveTowns - Thanks for the info. I am a member of COB forum so have heard about imbedded infections and the current fight for better UTI testing. I sent a letter to my MP telling him about the recent debate in Parliament (although he hasn't bothered to respond). It's horrific how many people are left in pain because of poor testing.

I thought the Facebook group was only for people in treatment for imbedded infections? If not, I would love to join! I've always wondered if I have an infection as opposed to IC. It's something I want to look into.

Simmi1 Mon 31-Oct-16 08:55:29

Wow thanks OP - that's really helpful. Yes it could be an infection but actually even before I started the abx my bowel and bladder symptoms alternated a bit. And also when my bladder symptoms disappear the bowel symptoms come back which is a pain. The timing does seem a bit strange with the abx though. What would you suggest I ask the urologist for? I'm already on 100mg of amitriptyline for both bowel and bladder and anxiety caused by being ill! It doesn't seem to help much though. Do you find any pain killers in particular help?How do you treat an embedded infection?

brokenbladder Mon 31-Oct-16 10:17:50

I am only prescribed co-codomol at the moment which takes the edge off but that's all. I am having bladder instillations at the moment which have helped so I don't need to take painkillers everyday, thankfully.

Would you look into herbal supplements? There are lots that are supposed to help with IC. I currently take Marshmallow Root Capsules which have helped a little and I also take Marshmallow Root Tea (it's an acquired taste but you get used to it). Both can be purchased from Amazon.

Have you altered your diet at all? I follow the IC diet quite strictly and find if I deviate from it, the pain worsens.

I believe an imbedded infection is treated with long term antibiotics but you would need to do some research on that. I haven't looked into it too much.

What's your next step with the Urologist? What have they suggested treatment wise if they think it's an infection and not IC?

Simmi1 Mon 31-Oct-16 11:07:08

so the urologist wanted me to do 6 weeks on norfloxacin and then 3 months on macrodantin. I'm currently on the macrodantin but the symptoms came back when I stopped then norfloxacin. The urologist doesn't want to see me until I've finished the macrodantin which will be end of December. If I'm still having symptoms at that point we will go down the IC route. So have your symptoms only been going on 4 months and you've already tried all these things? I've cut out caffeine but not alcohol. I haven't found alcohol aggravates my symptoms but maybe I need to cut it out for longer. I don't tend to eat a lot of spice. Thanks for the herbal tips - will look into them!

brokenbladder Mon 31-Oct-16 11:51:08

Yes, symptoms since June and willing to try anything to get out of pain!

Have a look at the IC diet and keep a food diary to see if your symptoms worsen with any food. You might not be food sensitive but worth having a look. I have drunk only water for 3 months and stuck to the diet quite rigidly but still have pain. I am hoping that my bladder will able to heal if I keep it non acidic. The diet isn't much fun but I'm hoping for an end result with it! If you've had no reaction from drinking alcohol, that's positive. Most people feel the effects from that almost instantly (I know I do!).

I guess medication wise there's not much you can do until you finish these antibiotics and see the Urologist again. Maybe it's the Norfloxacin you need to be on. My advice is to do your homework on everything including embedded infections and IC. That way, when you next see the Urologist, you have all the facts as well.

Simmi1 Mon 31-Oct-16 12:07:01

Thanks for the tips. Yes it's all so odd - I've been keeping food diaries for ages due to the bowel problems but didn't find a trigger for that. Same with the bladder now. If I'm having a bad day it will be bad no matter what and vice versa. Actually with alcohol I find it takes my mind of the pain. My pain isn't intense - more a dull ache and not feeling quite right. It's better when sitting or lying down and worse with standing and walking. I used to love Zumba and running but don't do any of that now - just swimming. Your urologist has moved really quickly - my symptoms also started in June. I didn't see a urologist until August and she still thinks it's too soon to give an IC diagnosis. I'm in Australia though so maybe a different process here. I saw in your blog about the bereavement process - I can so relate to that. Up until just over a year ago I never got ill, never had any sort of symptoms and basically took it all for granted. Now it's like if it's not my bowel playing up it's my bladder. It's always something- it's so frustrating! I look at all the fit older people going for runs and get very jealous and think why is my body giving up on me now - I'm only 40! I know that's not a positive attitude. Anyway I hope your symptoms just disappear and let me know how things go over pm. I'm off to bed now 💤

brokenbladder Mon 31-Oct-16 14:36:39

I know how you feel, I'm 29 and nowhere near ready for my body to give up! One last thought...have you looked into pelvic floor dysfunction? That can be the root of bladder, pelvic and bowel pain. My pelvic muscles are in a constant state of tension so I have exercises to try and relax them. Worth looking into, goodnight! x

joshlymanlover Tue 01-Nov-16 08:29:02

Do you have any other things linked to it?
vulvodynia For example.

What helped me was sticking to water (tea was a big flare) and peeing in the bath.

I am so much better now but still couldn't have seem more than say once a week or my symptoms would be worse.

brokenbladder Wed 02-Nov-16 11:49:08

I have pelvic floor dysfunction but thankfully that's all!

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