New to the ICN

[BethW]

Hi, I've never subscribed to a forum before so I dont know if I'm even doing this right. I was diagnosed with IC in 1999 and took Elmiron, Elavil and Detrol for the first few years. Lately, I have gone really down hill, am in a lot of pain. In the last months I've also been diagnosed with osteoperosis, degenerative disc disease, Grave's Disease, Epstein-Barr and now I may have endometriosis. My 30th birthday was in March. I dont feel the urologist I have been seeing for a couple years has really done anything for me and am now scheduled to see a urogynecologist next week. I hope he can help.

Has anyone ever read the book 'You Don't Have to Live With Cystitis' by Dr Larrian Gillespie? I've recently read it and have found it useful. I am trying to convince my uro to give me the Gillespie Cocktail or to find a uro who uses her methods. I will go anywhere in the country. I'd welcome suggestions. Many thanks.

[ICNJess]

Hi! I just wanted to welcome you! I'm 21, and was just diagnosed in 2003 after years of suffering with this stupid diseaes. I have a few others on top of this one. Hang in there, if you ever need anything at all, like help or someone to talk to, don't be afraid to ask. :)

Hugs and love,
Jess

[Sarojini]

Hi Beth, and :welcome:

I just turned 30 last weekend... and I know what it feels like to have to take more meds than my 90-yr old grandma. I've never read the book you mention, but I've heard it is good... and I don't know what the Gillespie cocktail is.. but I do have IC like you, and I know about the other meds you mentioned because I've taken them (except for Elavil).

However, if you ever want to talk to somebody close to your age, feel free to send me a private message or email me!

[dyno]

:hi:
Welcome to the ICN. If you are willing to travel, there are some good IC Dr.s around. We don't know where you are at in the country, but those on here with good Dr.s will let you know who they are. There is also a list of physcians on this site.

http://www.ic-network.com/handbook/

The diet also in the handbook can be very helpful. Let us know what else you might need. We are a caring bunch on here. :kiss:

Here is a Dr. list.http://www.ic-network.com/md/doctorlistings.html

[Dixiefireball]

I just wanted to welcome you to the icn family.

[kelly McC]

Hi:hi: and welcome:welcome:
Just wanted to welcome you . I just turned 31 and was just diagnosed in March. I have not read the book you suggested but I did read Dr. Moldwin's book IC survival guide. It's a wonderful book. I hope your new doctor can help you . Best wishes and take care,
Kelly

[aantol73]

Beth,
Hi there and welcome, I think you will really enjoy this board. People here can actually relate to what you are going through.
I too am 30, have epstein barr, with a few other things. I was diagnosed with IC in 1997... but I have to say I have not read the book you mentioned nor am familar with the "cocktail" but if you need to talk or have any questions feel free to pm me or email me.
I am sorry to hear you are in pain and are suffering... can you see this new doc soon???
I REALLY hope so..... GOOD LUCK!!!!!!!
and once again WELCOME!!!!!

[elsie123]

I know the ICN does the recommend the book by Laura Gillespie. I also read that several years ago she was forced to give up her license to practice medicine in the state of California.

[gypsyjoy]

Welcome to the IC network. Good Luck. I hope you find the help you need.
JOY

[gypsyjoy]

Welcome to the IC network. Good Luck. I hope you find the help you need.
JOY

[ICNDonna]

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

Dr. G's book does have some good information, but it is true that she had her license to practice medicine suspended --- I'm not sure if she's back practicing yet.

I suggest you read Dr. Robert Moldwin's, "The Interstitial Cystitis Survival Guide." It's written in easily understood language --- plus the entire book is about interstitial cystitis.

Also, you'll want the read the information in the Patient Handbook at http://www.ic-network.com/handbook/

Sending healing thoughts,
Donna

[BethW]

Hi Everyone and thank you so much for your kind emails and for the info on Dr Gillespie. I will definitely read the IC Survival Guide.

I live in the Baltimore/Washington DC area and am searching for a new urologist/urogynecologist and will let you know if I find anyone good. I am also on the waiting list to see someone at John's Hopkins.

I'm realizing how important it is to have a positive relationship with your doctor - someone who will listen to you, take what you have to say seriously and who is willing to be open to new ideas.

I've also found a v. good physical therapist in Kensington, MD and have started a program with her for the next 2 months.

Many thanks for your messages and good thoughts!