overwhelmed

[PeeingPirate]

Hi my name is Erika and This is my very first post :hi:
I was diagnosed with IC about three months ago. I have had symptoms for about 2 years but was shuffled around from doctor to doctor and never really listened to. I don't know how many times I came up negative for a UTI but the doc gave me antibiotics anyway. I am very confused, there are so many different options out there and I have no clue where to start. This site has been so incredibly helpful, but at the same time I hear many conflicting views on different treatments. Also, the more I reasearch the more I think that I might have more going on than just IC. I have trouble starting to pee and have pain in my perenium and anus, it hurts to poo. Could someone who has PFD tell me what their symptoms are like? At my next appointment I would like to talk to my doctor about PFD but I'm not sure how to, I'm scared I'll get that look that makes me feel like nobody believes me! Please help if you can. :help:

[petrie86]

Hi Erika, Welcome to the ICN!!! It's nice to know that your not the only one suffering out there huh? I was so relieved as well when i dxd with IC. It took me 2 year and several dr's to get dxd too. alot of dr's dont know alot about ic. They think were liars and it's all in our heads. Well its' far from that! It's very painful and stressful. It takes alot of us emotionally and physically. howevere there are some very good drs out there who are willing to help us. Everyone body is different, so keep in mind that some medicines might work better for others. I started out with Elavil 10mgs and instills. they didnt work for me so I'm on Elmiron now... It's helped me out alot. I hope that your uro will also give you something to relieve your pain. anything to keep it moderate so you can have a life again. And remember were not drug addicts!!!! keep your chin up honey... we're all here for you. If you ever need to talk feel free to pm me. I maybe young but I've been through alot. Sending you hugs and I will be praying for you.

Rachel

[ICNDonna]

:welcome: to the IC Network. I know you'll find a lot of information and support here. One thing you might do is to print out some information from the Patient Handbook about PFD and take it with you to your doctor and tell him/her which of the symptoms you have and ask if that might be a part of your problem.

I hope you get an answer soon. If you do have PFD, therapy can help.

Warm welcoming hugs,
Donna

[vm]

Definitely make sure to peek at the ICN's Handbook. You can find it at this link:

www.ic-network.com/handbook

[tigger_gal]

the think with the different meds not working and working, is we all respond differently to treatments. I kknow you will learn a wealth of info within these pages, and a ton of support. We are glad you found us. :)

[Waves]

Try things gradually is my suggestion . . . and as a newly diagnosed IC-er, the diet, though hard, has helped A LOT. It was best for me to just give away the problem foods, but I don't know if that's possible for you. I haven't kept a food diary (too depressing), but I can tell pretty quickly if something's a problem food, spice, etc. I found some of the shop's diet publications, especially the special report, really helpful. I think my first few weeks were the hardest, most overwhelming. I now believe I can still live a quality life . . . with a challenge, but with good things in it.

[PeeingPirate]

Thanks you everyone for the advice! I can't describe how good it feels to know there are really awesome people out there that understand what I am going through. Getting diagnosed has been a long tough journey. I'm ready to start taking controll now. I know whats going on with my body and I have amazing resources, I can do anything! Finding the IC network has been a great blessing. :angel:

[sandy1020]

peeingpirate, i'm so sorry for all you are going thru and I have been peeing 50 x a day since last dec. But my reg gp is controlling my pain which in turn ends up controlling my frequency. first he tried vicodin cuz my uro didn't want me on narcotics. But I can't function 24hrs a day in bed pivoting to the toilet,roll back in bed then again to the toilet,so on and so on...YOU UNDERSTAND i'm sure.But my reg dr has a friend and some patients w ic and truly knows what we go through. He's actually a devout Christian man and sometimes prays with me, how unbelievable is that! The Vicodin did some good but I was still peeing every half hr to an hour insead of every 15 min or more. I was reluctant to go any stronger but he told me I need to have quality of life. He prescribed oxycodone which is great beause 1)it doesn't make me feel loopy even though it's stronger 2)I take 1 tablet in the morning and it lasts all day cuz it's extended released slowly into my system all day long.3)IT WORKS!!!!! I now can go hours without having an urge to pee. I do notice a difference when it starts wearing off 10 to 12 hrs later but I just take my ativan for insomnia for the last 10 yrs and zanaflex for my TMJ for the grinding of my teeth and I usually get up twice a nite to pee. I was able to take my daughter to the mall yesterday for hours of shopping. Think I over-did it though cuz I was TIRED!! I pray your dr can find what's right for you.Everybody responds to meds differently. Stay strong, Sandy :woohoo:

[GoldSeals]

Peeingpirate,Thats some name:)Im sure youll find some remedies posted here:)

Sandy,Im curious are you having a side effects from the vicodin or oxycodone?
I take motrin occasionaly and it does help some however im in pain a few hours later I get severe pain in my bladder and it burns like hotwater.Sort of like a bladder hangover.Its like pay the price later for some relief.Are you sure your taking oxycodone or oxycontin?I may try the Vicodin again which I tried a few years back with little results.
GoldSeals