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Posts: 232
Reply with quote  #1 
Hello all. I am a fellow IC sufferer and have had IC for six and a half years.  I feel a bit like I'm at an AA meeting but I really do have to own up to this now!!!
I have tried to pretend I didn't really have IC and that one day I would wake up and everything would be OK again *!?*!?  - but I've stopped all the denial stuff now and that's why I'm posting this message.  I need to be in contact with people who understand what it is like to have IC and discuss the different methods we all try to manage our condition  - particularly the pain. 
I was diagnosed two and a half years ago after many tests (four and a half years of tests!).  I kept telling them it was my bladder that had the problem but got every test going before they did a cystoscopy and discovered the tell tale glomerations and inflamation on distention of the bladder. I had already researched my symptoms on the internet and was not suprised when they told me I had IC. .  After another cystoscopy with biopsy I had a couple of weeks almost pain free and thought I had been cured but the symptoms returned.   I began to manage IC with diet and some dietary supplements and cimetidine from the consultant.  Again this seemed to work for a couple of weeks and then the symptoms returned.  This has been the general rule for me. 
After trying numerous meds from the consultant - who, by the way, told me I most probably knew more than him about my condition which filled me with confidence!!- I discharged myself and tried alternative treatments.  These included Prelief, alkalizing drops, acupuncture, very restricted diet, some of which helped initially but as before the symptoms always returned within about two/three weeks. 
My IC has gradually worsened over the last 18 months and now I am having problems with my bowels, vulvodynia and pelvic floor dysfunction.  I have been visiting my Dr for different pain meds and have now gone back to the consultant and am due for a bladder stretch early September.  My bowel consultant has been very helpful and has sent me to a pain Dr.  He put me on a mixture of drugs consisting of Pregabalin, (150 mg X 2 daily) (which I have been taking for some time but he upped the dose), Baclofen (5mg X 3 daily) and Tramadon slow release (100mg x 2 daily).  This made me nearly comatose and very sick!! I have only had 2 of the Tramadol and stopped the Baclofen after 2 days.  I have stayed on the Pregabalin, as I know this suits me, but have played around with the dosage myself.  He has also suggested that I have a Sympathetic Nerve Block.  This is an injection into the spine which delivers a local anaesthetic into the sympathetic nerve which can give pain relief to the lower part of the body.  I am really worried about having this done and would like to hear from any one who has had it.  In theory it sounds as if it might work and as oral meds don't seem to help much I guess I will have to go for more invasive treatments but I'm just a little scared. 
Sorry I have really rambled on but it feels good to be contacting fellow IC friends who understand this complex and frustrating condition.  Looking forward to hearing from you - Sara.


Posts: 93
Reply with quote  #2 
Hi Sara,
Well we're glad to have you on board - I'm fairly new to the forums myself but I've found that it's really invaluable to have other people to talk to.  You're definitely not alone in most of what you described - we've probably all tried to deny what we're going through at one time or another, particularly because we've been surrounded by gps' or specialists who've been denying it as well.

I have very similar issues as you - some things seem to make a difference for a bit but never really make that much of a difference - I have to take another look at the diet though - some things that didn't hurt me before are hurting me now.  My bowels have been shot since my gallbladder surgery last year and I have also developed vulvodynia and pfd.

I have heard of the nerve block and have heard that folks received great relief from it - it's something I am considering myself.  But I can't get back into the uro until December - hopefully there's someone out there who's tried and it can give you some additional info and support.

Hang in there!

Posts: 318
Reply with quote  #3 
Hi Sara

I had a lumbar sympathetic block done at several levels by a pain clinic Dr last summer. It was done for my back/leg pain mainly, but as I have PBS there was an expectation it would help - it did!!! My capacity went up and my pain/pressure dropped. It was a block that I had done with anaesthetic injection as a trial and as that had a good effect, I had it done using some sort of heat to destroy the nerves. They have since regenerated and I am waiting for a more invasive procedure to try to help my back/leg pain with the expectation again, that it might help my pelvis and bladder - however this has been easier since I started on cimetidine.

The procedure was very straightforward - I had sedation, but only enough to relax me as they needed to ask me questions. It did take a couple of hours to do, and that was difficult as I had to stay still......not easy for me.

I hope this helps, let me know if you need anymore info.
LizB x


Posts: 232
Reply with quote  #4 
Hi Taran
Many thanks for the reply and your encouraging and positive comments about the nerve block but what were you doing up at that time in the morning?  I hope it wasn't your IC.  It sounds as though we are having a very similar IC experience only I haven't had problems with my gall bladder.  I have divertivular disease but I actually think that the IC has caused that to flare.  Does that sound ridiculous? I just think the inflammation and pain from the initial bladder problem seems to have affected the whole of my body between my waist and my knees!!  Is there a connection between IC and gall bladder? It would be interesting to find out.

I am looking forward to the nerve block in a way - just worried about the procedure.  I have read a couple of abstracts on the net about it being used for IC patients and it seems to have helped the majority of people who have had it done but these are very small trials.  I have also read a very distressing post on another forum about someone who had it done for whom it didn't work and made matters worse.  Sometimes no information is good don't you think!

Anyway I try to remain positve - difficult sometimes I know.  I am enjoying my summer hols from school and just enjoying myself, resting when I need to and doing as much as I can when I'm feeling good.  I am having a good day so far - hope you are too.



Posts: 232
Reply with quote  #5 
Many thanks LizB for your reply. 

This is very encouraging.  My pain Dr said that if the initial trial worked they would destroy the nerve which sounds the same as the procedure you have had done.  He also said it would regenerate eventually which I guess is what has happened to you. 

Good luck with any further procedures.


Posts: 180
Reply with quote  #6 
Hi Sara, I had the nerve block done for my bladder in March this year(same as LizB describes below with the test first). It was actual ok having it done, not nearly as scary as I thought, mainly because you are awake (and can't see what is happening as on your front) and you can talk to the nurses and stuff.
For me it didn't work unfortunately, but the pain doctor was very disappointed that it hadn't as he has done many successful blocks in the past. I am now due to have another block done higher up the back (superior hypogastric plexus block) which he thinks might work for me (end of september).
By the way, my pain doctor assured me that if it didn't work, nothing bad would happen ie I would either be better or the same. He was right. I was sore for a good 2-3 weeks in my back but that quickly passes.

Good luck, I hope it works for you, if you have any questions am happy to help if I can!
PS welcome to the site, it does feel a bit like AA sharing your inner most thoughts, but I can tell you it is amazing to be able to talk to lovely friendly people who know exactly what you are going through and receive advice!!

Posts: 1,154
Reply with quote  #7 
trotters did your pain doctor say anything about side effects such as leaving you with retention at all? When I was going down that route in years gone by they said that was a possible side effect and that I may have had to self cath If things had gone wrong. In the end thats why I didn't go for it. Luckily at the moment pain wise I don't really need one unless I want to try and take my meds of course which cause me to flare.

Did they mention anything like that to you at all?


Posts: 232
Reply with quote  #8 
Thanks for welcoming me to the site trotters.  I am starting to feel reassured already.  At least the procedure doesn't seem to be as scary as it sounds.  Sorry yours didn't work out, better luck with the next one.  I'm having mine sometime between now and December - date TBA.  I will let you know how I get on and I would be interested to know how your second one goes.

Hope you're having a good day.


Posts: 180
Reply with quote  #9 
Hi Sueworld2003, yes we talked about this as I was very nervous about that being a side effect but he assured me if I did lose the ability to wee it would only be temporary, it happens less than 1 in 100 procedures apparantly. The trial with the local anasthetic is also a good test as it works in the same way, in the same place. You would get a chance to see a. whether the pain block has any effect  and b. you get any unwanted side effects - ie cannot wee. If I had lost the ability to wee naturally during the trial version I would have not gone ahead with the procedure though just in case!!

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