NEW-to IC ~hoping to make connections for support, info, etc.

[LiALOHA]

I'm new to IC, not yet "formally" Dx'd but Dr's feel IC is the reason for the severe AB pain I've been experiencing. I have history of chronic pelvic pain disorders--mostly from surgical complications resulting in adhesions. I thought that's what this pain again was but after relaying to GYN that pain was worse when bladder full, "urgency" and frequent urination (including many times at nite) . DR suggested being checked out for IC. This GYN surgeon also thought I should have radical hysterectomy, which I didNOT feel was needed. I went to another GYN (who'd previously operated on me for hemmoragic cysts & adhesions) This DR felt no need for surgery suggested by other GYN but that I should have cystoscopy to check bladder, and if indicated, instillation at that time. He will be doing procedure this week--WED. I have done some research on IC ; am wondering if there is anything I should know prior to cystoscopy?? Or any SUGGESTIONS, in general , RE: IC ~ painful bladder disorders..

I have other chronic pain disorders including myofacial pain syndrome, post traumatic Fibromyalgia~ I thought the "bladder issues" were part of the Fibro.~which for me is severe (disabling acutally) ~ an insidious disorder that exaccerbates, negatively affects my Life-style, with constant intense pain, debilitating fatigue, "brain fog" and more.
I've suffered w/ migraines since childhood. And in past years additional medical "stuff" -- idiopathic sensory neuropathies, Restless leg syndrome, other sleep disorders, and more...I won't get into now..
I'm hoping to hear from others- anyone who wants to share, communicate, etc. Meanwhile I'll read more of your stories & posts....
mahalo (thanks)
aloha...
Li

[armslee]

Hi Li- :hi:
Welcome to the IC board. This really is a wonderful place to come for knowledge of the disease and support from many others who suffer. For some like myself, it is the only place to come for support as there are no "live" support groups in my area.
I hope that you will feel very comfortable and learn alot. The patient handbook is a great place to start just for information but you will learn lots from other posters.

Let me know if there is anything that I can do for you!:smile tee

[sandramac]

:smile tee :welcome: Just wanted to welcome you to the ICN! You will find loads of info and helpfull information in tha patient handbook.If you have any questions feel free to ask anything! We are not shy here and share to support each other! Hugs Sandra:cat: :cat: :cat:

[ICNDonna]

I hope you get some answers soon. Is your cystoscopy going to be done in the doctor's office? If so, it will probably not diagnose IC, but will help rule out other possible causes for your pain. You can read about diagnostic procedures in the Patient Handbook at http://www.ic-network.com/handbook

Sending healing thoughts,
Donna

P.S. :welcome: to the IC Network!

[creatingkarma]

Just wanted to say hi & :welcome:! The others have pointed you in the right direction - The Patient Handbook! A lot of us here have more than IC, so you are not alone! Good luck on Wed!

[mary124]

Just wanted to put my offical :welcome: in! Good luck on Wednesday.

Mary

[windwalker]

Welcome, Li!!! You will find a lot of support here. Lots to read and learn. Don't hesitate to ask a question, someone may have some ideas for ya!

[cass2376]

:welcome: Hi there Li! I'm so glad you found us here. This site has been a Godsend for me and the many other sufferers w/ IC and many other sicknesses:)
I am sorry to hear about you not feeling well. I hope they can find something that will help you w/ your pain and symts. soon. Good luck w/ your cysto. coming up and like all the others said, read the patient handbook ASAP, it really will help and answer a lot of questions you may have right now. I have IC, and Fibro as well.....NOT fun! If you EVER need anything either, e-mail me, post back here,or PM me (priviate message) here too! I will try to help you as best I can and if I don't know, than I am sure we can find out what you need to know from someone else here, there are some great people w/ so much knowlage of IC here that are always willing to help!! We are like a great big family! So.... Welcome to the family!:) Well, gotta go, but like I said, I am here if you need some help or just a friend to talk to:smile tee Take care of yourself and I will say a prayer for you!
Take care and Godbless, Cassandra:angel:

[Babs RN]

Aloha!
Oh it's been so long since I've seen that word in text. I graduated from Mililani High School and miss Hawaii a ton! I hope you get some answers soon. The ICN is a wonderful resource and place for support. We all have had a myriad of experiences you get the best of all worlds. There are also newbie angels on the boards who have volunteered to take those who are newly diagnosed and answer their questions or share experiences either by PM or email. Please let us know how we can help.

Love and aloha,
Barb:smile tee :smile tee :welcome: :hi:

[LiALOHA]

Mahalo (thanks) to all for the welcome, support, etc.

I 'm getting ready to head to hospital for Cysto. now.--it will be done at outpatient surgerical unit, under "mild" anesthesthia (spl??)-- I am concerned about "pain" (per what I've read that many expreince much [more] pain after Cysto. BUT am hopeful that via procedure I'll get some intervention for the pain already experiencing--some "medication", installation, etc... so... will see...
Just wanted to check in quickly before....
I hope to more personally connect as I feel will NEED it ( so again thanks for all the "personal" offers for support, info, etc...

I 've been reading as much IC info as can ... including the patients Handbk.

So will see what today "brings'...
again Mahalo (thanks) to ya' all...

aloha,
Li

[armslee]

Li-
I hope that all goes well for you today!
:grouphug:

[windwalker]

I hope everything went well. :)