Interstitial Cystitis

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Interstitial Cystitis

Postby Gilly52 » Mon Jun 16, 2014 10:31 am

Are there any ladies out there who are suffering this awful painful interstitial cystitis ? I would welcome any tips you have on coping with this condition.

Last week I had another course of antibiotics from GP,(I have been put on several different ones) relieved it for a few days, but the pain is back again.

To be honest I feel at my wits end at the moment with it, I suppose with the fibro pain we suffer none of us want any other condition :(
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Re: Interstitial Cystitis

Postby SchroedingersCat » Mon Jun 16, 2014 10:39 am

The lady who writes this excellent blog suffers from it, I *think* she may be a member on here http://theretiredbridgeburner.blogspot.co.uk/
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Re: Interstitial Cystitis

Postby Lindilou » Mon Jun 16, 2014 11:39 am

Gilly52 wrote:Are there any ladies out there who are suffering this awful painful interstitial cystitis ? I would welcome any tips you have on coping with this condition.

Last week I had another course of antibiotics from GP,(I have been put on several different ones) relieved it for a few days, but the pain is back again.

To be honest I feel at my wits end at the moment with it, I suppose with the fibro pain we suffer none of us want any other condition :(


I suffer with this. The solution in my case was to take one Cefalexin antibiotic each day, which the doc suggested and yes it works.
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Re: Interstitial Cystitis

Postby Gilly52 » Tue Jun 17, 2014 11:54 am

Hello Lindilou

Thanks so much for your reply, I have been suffering so much pain with this for the last 9 months and not really getting anywhere, I have felt alone and disappointed with the GP as I feel he wants to put everything down to fibro, whereas I have known this pain was something different. I have had a few courses of antibiotics which relieve it at the time, but a few days after the course is finished the pain returns again.

With you saying you are on Cefalexin all the time makes complete sense to me now, I am seeing GP in a few days. What dosage are you on daily ? I feel quite down in myself at the moment, as I am sure you can understand, so I will try my hardest this week and be brave when I see him to hopefully get my point across.

Thanks once again, I hope you are having a reasonable day x
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Re: Interstitial Cystitis

Postby Lindilou » Tue Jun 17, 2014 1:18 pm

My doc uses Cefalexin as a deterrent, to stop it happening in the first palce so to speak. She calls it 'a background thing'

My dose is 250mcg (one a day, in the morning). If your doc gets awkward ask him if you can try it as a trial, then as it works (obviously) you then have the proof that this is the answer, then he can give you more ! :fingerscrossed:

:goodluck2:
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Re: Interstitial Cystitis

Postby Lindilou » Thu Jun 19, 2014 6:23 pm

Gilly52, what happened at the docs, were you successful?
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Re: Interstitial Cystitis

Postby Gilly52 » Fri Jun 20, 2014 7:33 pm

Hi Lindilou

Thanks for keeping in touch much appreciated. Yes, successful consultation with my GP this afternoon. I wrote everything I knew about interstitial cystitis down for him to read, and he seemed grateful for the info, just me, I get so nervous before going there !! So he has prescribed me the same tablet as you are on,
one a day for a month, then see him again.

I think with fibro and now this bladder problem the doctors have a lot to learn themselves and it is from our feedback as patients that they go through this learning curve, especially as we are suffering from illnesses that have no easy answer and cure.

Thank you very much for your interest and help to me, I hope we can exchange some useful info to one another in the future.

The weather is very hot, lovely to see the sun, but the heat drains any energy I have :!:

So fingers crossed I will go on ok, I will keep you posted on how I am doing.

Hope you are having a reasonable day and the weekend is good for you as well.

Take Care x :-)
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Re: Interstitial Cystitis

Postby Lindilou » Fri Jun 20, 2014 8:21 pm

Hi Gilly52,
Just glad to be of help. We have to stick our necks out and demand what we need. I am so happy, no, relieved that you finally got the tablets.

Yes, I think summer has arrived - finally. I have a busy weekend but with nice things to do :-D
Pace yourself more when it's hot, it's the only way and keep hydrated.

I hope you have a good weekend too, Take care of yourself Gilly52. :hugs:
Lindilou
 

Re: Interstitial Cystitis

Postby Gilly52 » Thu Jul 03, 2014 12:45 am

Hi Lindilou

Just to keep you updated, I have been on the antibiotics for nearly 2 weeks now and have been doing reasonably well until this morning, I woke with the pain in my bladder area again and to be honest it has not let up much all day, and at this late hour I am now about to get a wheat bag from the microwave to lay on my tummy in bed, I do find it helps, even though I really don't want the heat on these warmer nights :!:

Do you still have bouts of pain despite taking the antibiotic daily ? I do have times when IBS likes to play up as well, with allsorts going on with fibro it's a job trying to control everything. :-?
We all try to "keep our chins up", just sometimes, I find if I think I have turned the corner with a problem, it will come and "bite me on the bum" again. So as the old saying goes "keep taking the tablets", I have another 2 weeks till I see GP again.

Hope you are feeling as reasonable as you can, the weather is apparently turning cooler with some rain, I like to see the sun, but too much heat makes the fatigue kick in much faster.

Take Care sending (((Gentle Hugs))) Goodnight :sleep: X
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Re: Interstitial Cystitis

Postby Lindilou » Thu Jul 03, 2014 12:06 pm

Gilly, give it a bit more time. I don't get any pain anymore but then I have been taking the tablets for 4 years now, maybe the level of the tablets needs to get higher in your system. :hugs:

Can anyone else advise our poor Gilly :?:
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Re: Interstitial Cystitis

Postby Gilly52 » Thu Jul 03, 2014 10:57 pm

Hi Lindilou

Thanks so much for reply, means so much when you feel alone with a problem, to get a reply, makes you realise we are not alone here on the forum

Yes, I have to give the tablets a bit more time, I'm feeling stressed at the moment, my Dad is poorly with dementia, he fell and broke his back 3 years ago, was bed ridden for a few months, this is what started his dementia off, he then went into residential care, lovely home with caring staff, Dad's dementia on a very slow decline, but on Jan 4th this year he started having epilepsy, he's aged 87 never had a fit in his life before, so a complete shock to us all, hospital then for 6weeks, and since then the dementia has been on a much more rapid decline. Some days I think I have accepted it, then there are others where it just breaks my heart to see him this way, he's no longer the Dad I knew, it is a most soul destroying illness.

So all in all with everything that's been going on it catches up with me, and from lots that I've read, most fibro sufferers before the illness were all good, no matter what life threw at them, and sometimes I know I feel that way, hard to accept the life I have lost, I lost my Mum to cancer 19years ago, yes, I was devastated at the time, but I was able to pick myself up and get back to work and into the routine of normal living again. So much I had planned to do in my retirement, but I had to give work up long before that date arrived, again I found this hard to accept I had a career I loved for which I am grateful, as there are so many young sufferers out there struggling to keep their jobs etc.

Sorry for the moan, but the pain is a little easier tonight so fingers crossed for a better day tomorrow

Thanks again Lindilou, Take care, we must try to keep smiling X :-)
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Re: Interstitial Cystitis

Postby Lindilou » Fri Jul 04, 2014 8:24 am

Gilly, I have been looking back in my diary. Sometimes I don't get an actual 'pain' in my bladder but something that feels like a 'tenderness' and then a hotty water bottle helps, usually I would use this for a cpl of days then things go 'back to normal'. (Strange word that, 'normal' :lol: ) So when you see the doc tell him the tablets are working !

I understand about your dad, my dad died in 2007, he had alzheimers. We think out parents are immortal don't we, but they are just as fragile as ourselves. :( Mum died 6 months later too and also my natural father (I was adopted), three funerals in the space of 8 months.
Events in our lives can and DO trigger stuff like Fibro, ME etc.

If you want to 'pm' me then do so, I've tried to work out how to do it but not had any success as of yet.

Take care now :grouphug:
Lindilou
 

Re: Interstitial Cystitis

Postby Gilly52 » Fri Jul 04, 2014 12:48 pm

lindilou, thanks for your reply, you like me keep a diary, it does help so much sometimes to refer back to and for up and coming events, memory used to be good, but now I write everything down to be sure :!: :!:

I agree that word "normal" does sound strange, but as long as we know what we mean that's all that matters. Pain wise in my bladder area is better today, also IBS seems to have settled, just sometimes I feel I'm on a rollercoaster so up and down.

Yes, I also believe that traumatic events through our life can effect us later on, you certainly had a tough time with so many funerals in a short while.

I spent ages yesterday trying how to get a "pm" to work, but no luck :( If I do work it out I will let you know.

Take care......hope you have a nice weekend :-D
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Re: Interstitial Cystitis

Postby Lindilou » Fri Jul 04, 2014 1:29 pm

Gilly, I have sent you a 'test' pm, see if you have received it.
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Re: Interstitial Cystitis

Postby FluppyPuffy » Fri Jul 04, 2014 1:37 pm

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