Waiting a Diagnosis

[Rosalie]

Hello
My name is Rosalie and I'm new to the idea of IC. I am 51 years old and have suffered with pelvic pain for ever. I remember as a child trying to explain the sensation to my mother, alas! More than thirty years of doctors, specialists and hospitals had left me with no where to go. It was obviously only in my head and so, when the medicos gave up on me I nearly did the same. Only the thought of leaving my children kept me going. In May, after another so called "bladder infection" I got on the internet and found by chance, information on IC. Eureka! Now after seeing a Urologist who deals with IC, I'm on a waiting list for a cystoscopy and hopefully a diagnosis . She says she cannot start any treatment until then but I'm sure that I can now at least put a name to this pain that has plagued my entire life. Following some of the IC diet seems to have helped but I look foward to the day when the pain in my bladder doesn't rule the world.
I have eagerly read so many of your stories.They have brought some sanity and hope. I just want to say to anyone out there who may, like me, have stumbled onto this site " Don't give up, get to a Urologist who knows of the disease and you don't have to wait for a diagnosis before you can get some help and support. "
After thrity years of being told "congratulations, there is nothing wrong with you!" I will be pleased to give a name to my problem.
Rosalie

[Queensweater]

:welcome: Rosalie!
I'm newly diagnosed myself, and am still trying to figure everything out. Everyone here seems very friendly, and many are very knowledgable. I hope the waiting list isn't very long so that you can start your treatment sooner rather than later! :)
Heather

[lindy lou]

Welcome to the boards! You will find support here as well as answers. I too hope you do not have to wait long for your dx. It is at least comforting to know what's wrong and to begin treatment. I am relatively new here also, Aug 2004, and am patiently waiting for the Elmiron to make a difference. I hope you find some relief soon.

Linda

[ICNDonna]

:welcome: to the IC Network. I know you'll find a lot of helpful information here, as well as support.

I don't know much about the medical system in Australia, but would just like to add that I hope you are able to be tested soon so you will have some real answers.

The Patient Handbook at http://www.ic-network.com/handbook should be a huge help to you. There's also a Drug Glossary at http://www.ic-ntwork.com/glossary that will help answer your questions about what some of the different drugs are called in Australia.

My IC was diagnosed in 1975 --- and one thing I like to share is that there is life with IC. It may take a while to find which treatment options work best for you, but most of us do get there. One day you will feel better.

Warm healing thoughts,
Donna

[Imustpee]

Welcome to the board! Hi Donna, sounds like you and I have been living with I.C. a long time....I just got a jury summons in the mail. I will have to tell them I cannot be part of it.

[rockgrrl02]

Hi Rosalie!

:welcome: Im Emilie, im new here too. I have another apt in december with a new doc shes supposed to be the I.C queen at Dartmouth. I havent been diagnosed either yet, but My gyno thinks that I have I.C so its a waiting game for me as well! My moms name is rosalie too! :) I hope that things work out for you! Its no fun to wait and wait, but do try the diet. My pain is not gone but if I avoid the foods that bother me, it is alot less. Get the cookbook they recommend on here as well. The stuff looks pretty good and its got alot of information in it. Im only 20 so you have definately had this a lot longer than me, so I hope that they help you get better soon! Good luck with surgery. Also I take benadryl at night sometimes to help me sleep, it has anti histimines and is helpful, so try that if you are not sleeping well. Good luck with everything! the people here are really great and help give hope and encouragement, so keep posting!


Emilie

[Rosalie]

Hello Everyone
Thank you for your welcome. I'm still waiting for my cysto. It's been four months now and I've given up trying to get a date out of anyone. Guess I will have to wait for Santa.
However, after poking around this site and reading so many stories and comments, I reckon that I do have IC. Removing some things from my diet has helped but being part of these boards has saved my sanity. The only problem is that spending so much time sitting at the computer makes the pain flare!
Rosalie

[Sarojini]

:welcome: to the ICN!! One suggestion for the pain induced by sitting is to buy a special cushion to sit on. They sell these on this site at http://www.ic-network.com/shop, or you can get a donut pillow or something like it at a drugstore near you. The point of these pillows is to take the pressure off your genital and perineal areas when you're sitting for a while, and this can make a big difference in your comfort level. I know I have one of the IC cushions from this site in the car for longer trips and it certainly makes it easier to deal with!

Good luck, and I hope you get your cysto soon!!

[Rosalie]

Thanks Jen
I'm sitting on my donut cushion right now. Soooooooo much better. My 19yr old son went to the chemist to get it for me. Said he got some strange looks when he took it to the counter,HA! It was a great suggestion. Thank you. Any more ideas will be gratefully accepted.
Rosalie

[andcohen]

Hi Rosalie,
Andrea here again. I hadn't relaized that you hadn't been diog. as yet. Not that that matters as this is a great place for people to come & help them with answers, I always take info from here to show my local GP as he has been a great help where he can. I also waited 7 long painfull years before anyone told what I had :headbang: :headbang: . So I gald that you found us.
I have just written to you in another thread so hopfully you get the to.
Bye for now.
Andrea

P.S I think that was really sweet of your son to get you that cushion :kissing:

[Rosalie]

Having a nasty one today and can't guess what food could have set it off. You see, I've had food poisoning and haven't eaten anything for 36 hours! I didn't think I could be so sick without being dead. Don't laugh I mean it. My family had the dr out twice in the night for injections to stop the up-chucking. Haven't looked at the locum's bills, it will probably give me a relapse.
Guess I should be glad that the IC wasn't playing up at the same time or I would have been RS.
Yes my son is a wonderful young man, The girl I pick for him will be lucky indeed.. As if!
You know now that I have my donut cushion, sitting at the computer, reading these boards makes me feel better. Opposite of stress!
Thanks
Rosalie

[andi01]

anyone know where to buy those cushions in UK. the chemist/drugstore just gave me odd look and said didnt stock them. all the places on the internet are in USA. also has anyone tried low acid tea/coffee as was told about it on another site and never even realised tea/coffee had acid in?!

[Rosalie]

Hello Andi01
The blow up ring I got was one people use for haemorroids, hence the funny looks my son received. I am surprised you can't find one at your chemist. Try somewhere that supplies medical aids like crutches etc. Good luck.
Rosalie

[Sarojini]

You know, Rosalie, if you had a bout of vomiting, that in itself can cause your bladder to flare... when you contract your stomach muscles hard and fast to vomit, it can press on your bladder and really upset it! Then comes the flare. I know, I've been there before!!! I hope you get better soon. Try to drink small sips of water, and use your heating pad on your tender stomach muscles to relax them. Make sure to get a lot of rest, too! Hopefully this will pass and you'll get better very soon!!!

:grouphug:

[Rosalie]

Thanks Jen
The stomach is much better today although still a little "off". The IC pain comes goes during the day. Sooner or later it eases off, perhaps tomorrow.
Thnaks for the kind thoughts.
Rosalie