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severe IC pain - need advice on how to handle pain severe IC pain - need advice on how to handle pain

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Unread 05-02-2010, 01:49 PM
Unhappy - severe IC pain - need advice on how to handle pain severe IC pain - need advice on how to handle pain

I had stage four endo and had a complete hyster on 10 8 08. I had a brilliant surgeon, but a great deal of pain persisted and made me basically bed bond with a heating pad. I had exploratory surgery on my bladder and I have severe IC. I had the hardest time finding a doctor with expertise in IC. I now travel over an hour to get treatment and I live Atlanta. I am going thru instillations and get some pain meds...but they don't help much and the doc is relunctant to give me much...although NIH has said that IC pain is comperable to cancer. I need help...what works. I have changed my diet, given up my beloved coffee, cuddle with a heating pad all day and take elmiron and hydrocodone. Anyone else going thru this...what has helped you? I am getting desperate! This pain is unbearable.

Much love

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Unread 05-02-2010, 04:38 PM
Re: severe IC pain - need advice on how to handle pain

I've noticed a few other ladies here suffer with that as well. Is acupuncture available where you live? Sometimes that helps pain issues. Would your Dr be willing to refer you to a pain specialist, if he's not comfortable managing the pain? Those are what I would do. Sorry I can't be more help, hope you get relief soon.
Unread 05-02-2010, 08:50 PM
Re: severe IC pain - need advice on how to handle pain

ks1515, So sorry you have joined the IC group, I was diagnosed with IC almost two years ago, I've also had 4 surgeries since then for endo, bladder hole and ovary removal plus lots of adhesions.

IC is so complicated, Check the (IC Network) website, lots of info there. Surgeries do make it worse, it often sets it off. I am using Hydroxyzine (Atarax) for the pain, it doesn't take it all away but numbs the nerve endings which makes it easier to deal with. Unfortunately there is no cure for IC, so we have to learn how to deal with it anyway we can. I am also considering pain management at this point. I was told by my URO that he can not do anything for me. So my next step is to find a pain specialist and go to the Womens hospital in Vancouver if I can get a referral from my Doc. I live in a smaller town in British Columbia so there isn't much here for help.

What meds are they using in your instillations, DMSO? If they are using DMSO, it can either help you or make it worse. They don't know until they do it. I can't use Elmiron because I am allergic. My URO said he wouldn't recommend Elmiron anyway because it is so toxic. He doesn't prescribe it anymore. He did not recommend instillations either.

You might want to check the website, ( They have natural meds that are for IC. Bladder Q and Bladder soothe. The bladder Q has quercitin which I can't use because of my estrogen replacement, it interacts with it. But I'm hoping there is a way around that because there are not many other meds for IC.

It's hard to get help because everyone has a different idea and what works for one person doesn't for someone else. All you can do is try. Some days you can get pretty down but you can't let this thing take over keep trying to find ways to deal with the pain. My main focus right now is too find something to deal with the pain and improve the inside of my bladder, so that's why I was considering a naturopath. If I find anything that works well I will let you know.

Good Luck on your IC journey.
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Unread 05-02-2010, 09:27 PM
Re: severe IC pain - need advice on how to handle pain

Hi, I have read on IC website that some have used vaginal valium suppositories and some have used vaginal estrogen cream..........either premarin or a more natural one:estriol. Check it out and I hope this helps.....

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