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[trytosmile]

Hello fellow IC sufferers ...

My symptons started in Feb of 1998. Two years later and after seeing just about every type of doctor and having a wack of test performed I was diagnosed with this lovely illness. Years later they have still not been able to find a treatment that is effective. I've tried just about everything and some things twice. I have a low tolerance to medications so taking anything has to be in a low dosage which makes less effective too. Hydrodistention, twice, helped the first time for 3 months, the second time made it worse. They are now talking augmentation which are hesitating on because I already have a sluggish digestive system. Having a heck of a flare right now and going on two months now. Pain is so bad during urination that I pass out from it. I've learned over the years that treatments work for some and for some they don't or treatments work differently with each individual. Looking for any suggestions from anyone else out there that have been recommended by their doctors or things that you have discovered on your own.

[ICNDonna]

I'm very glad you found the IC Network. You'll find lots of information and support here. Are you on an IC diet? That can be so very important. You'll find diet information in the Patient Handbook at http://www.ic-network.com/handbook

Are you a smoker? Sometimes that can cause some real bladder pain. I have had diagnosed IC for almot thirty years now and when I quit smoking ten years after diagnosis it made a real difference.

I hope you find some effective treatments soon.

Sending healing thoughts,
Donna

[trytosmile]

yes, my diet is very restricted. I have purchases the cookbook from the IC website. Not a smoker either.

My last urologist tells me I'm just one of those patients where treatments appear to not work. Not very encouraging but he is right. I've done alot of research and there is a hand full of patients like me. I've been to the best urologist in Canada and he has been granted 2 million $ to study the disease at a fine univiersity. Hoping something comes from it. Keeping fingers crossed and spirits up.

[dancemomof2]

Welcome to the ICN. My only suggestion is don't overwhelm yourself with all this info at once. I did and was so confused trying to sort it all at once.

[SharonA]

Jen... :welcome: Just wanted to say hello and glad you are with us. :)

[Sarojini]

:welcome: to the ICN. I'm so sorry to hear that you've been through so much these past few years, but I'm certainly glad you found us. This is definitely a great place to come for both information and support from others who really understand what this disease is all about. Let's hope that your urologist can come up with something other than augmentation for you... wouldn't it be nice to find a less invasive treatment? :)

Good luck to you :grouphug: and keep posting :)

[trytosmile]

thanks for your support jen. I've been receiving lots of emails from everyone, welcoming me and just being able to talk to somebody that can relate to my pain helps. Why I didn't do this months ago I don't know. I frequently visit the IC Network website but never utilized this tool. Looking forward to hearing others stories and maybe there is something out there that will benefit me. Love the wedding photos.

[vm]

Welcome, Jen. :welcome: I don't have much to add to what others have already said. I am glad you found us and I know there are others here who have tried many, many treatments with no real progress. I hope you get a chance to talk to them - it makes such a difference to speak with someone who has been where we are. :kissing:

[VickiB]

Welcome Jen, glad to have you with us!

I'm so sorry you haven't found anything yet that helps! We're all looking forward to the day when they figure out just exactly what's going on, and the cure that will follow. Or at least a sure-fire treatment! It seems IC is getting more & more attention all the time. Hopefully, that day isn't too far off!

Wishing you better days soon!

Vicki

[Babs RN]

Jen,
Welcome to the ICN. Remember, knowledge with this disease is power especially when you are dealing with an knucklehead that knows nothing.
We are all in this together and here if you need us.

Hugs and :welcome: ,
Barb

[theclownster]

Hi Jen! Welcome to the ICN. I guess we have two things in common - we both have IC and it appears we both have the same name.

I'm sorry you haven't found any treatment that works. I can only imagine how discouraging that would be. I'm lucky as I've found ways to effectively manage my symptoms - well for the most part anyways. Some things help more then others. The main thing I think that helped the most is being able to get a full nights sleep. I'm on a couple meds that have drowsiness as a side effect - which luckily has helped tremendously - they keep me sleeping like a baby most of the time. I never realized before taking them how sleep deprived I really was. When you have had a full nights sleep you can manage pain more easily - at least in my experience.

I'll say a prayer tonight that you find a miracle!
Thanks for sharing with us!
Jennifer

[traceann]

Hi Jen! I just wanted to throw my welcome into the ring! I too am glad you decided to post, as I have been helped so much just by reading the posts and starting my own here, than from my Doc! LOL! I hate taking medicines anyway, and I have learned so many "self-help" home remedies here, that I trot out in order when I am trying to get past some pain without drugs. I gotta say 8 times out of 10 I am able to control it! Makes me pretty happy, lol. :) Hopefully you too will discover something to work for you, I have faith in that. And I agree with Jennifer, decent sleep sure does make a big difference for me too. I find my "tolerance" level to be much higher, and not just to pain, lol, but to boyfriend, annoying people, etc., LOL! So, anyway, welcome once again!

Hugs and Warm Fuzzies,
Tracey :)

[bethmacnamara]

Hi there,

I am new to this board but not new to IC. I have had it for many years.
I do have a question that I was hoping I could get some information
about though. Recently I found out that I tested postive to Strep Group D (Enterococcus)in my urine (bladder, intestines etc). It seems that this might be the original source of my IC. Problem is that my Urologist is telling me there is
no treatment. Does anyone know if this is in fact true? Is there
anything else (than western treatment I guess) that anyone knows of?
I am at a loss and any information will be so helpful.

Thanks to you all,
Cheers,
Beth

[QueenJutea]

Hi Jen,

I haven't visited this site in awhile. Like others who have gotten better I don't think about IC to much. Once in a great while I will get a twinge of pain usually around my monthly cycle. Then I take a small bed buddy that is made to use on your neck (I bought at Walgreens) heat it up in the microwave and put it on the painful area. Make sure it is not to hot. It feels wonderful.

Now this is really important do not use any kind of incontinence pads if you are having bladder leakage. Use only unscented organic sanitary products. Use unscented gentle soap. Be mindful that some medications dry up mucous membranes and for the vaginal area this is bad.

If you or anyone else thinks that their IC started with a bacterial infection please go to this website. I don't know if this protocol is or will work for IC but it is being tried on chronic fatigue, Lyme, sarcoidosis and other autoimume diseases. Go to www.marshallprotocol.com. This protocol could have a wide area of application. I know that there are IC sufferers that also have Chronic Fatigue, fibromyalgia etc. Dr. Trevor Marshall is a scientist and is conducting online trials of his protocol. He is NOT selling anything. In fact you will have to go to your doctor to get the medications to implement the protocol.
Dr. Marshall's theory is that these diseases are caused by small pleomorphic or cell wall deficient bacteria that can invaid the cells and evade our own immune system.
Like I said I don't know if would be effective on IC but at least go to the site and read about it.

Happy Holidays
QueenJutea

[trytosmile]

Thanks everyone for your warm welcomes and tips. It has been a struggle but already I feel a glimmer of hope just since starting to use this email tool. It helps to talk to somebody that "knows" your pain. Currenly I am taking Hydroxyzine for the IC and was already taking Amitriptyline for pain sustained in a serious motor vehicle accident in 1987. On top of that I have an underactive thyroid so being hit heavy with medications of all types. I have a low tolerance for medications and I'm prone to the side effects of each. Pain is constant, heating pads help one day others they don't. Everyday is different. Headaches appear to be getting more frequent, does anyone else suffer from terrible headaches too ?

[Katrina]

:welcome: Jen and Beth!

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you

Let us know if we can help you with anything else. :grouphug:

[traceann]

Ugh, yes I get bad headaches out of the blue, but I tend to think they are from the Elmiron, and just plain old fashioned daily life (plus IC, LOL) stress! Like life isn't painful enough with everything else! ACK!

Hugs,
Tracey :)