hello

[christalbean]

hello everyone!!! I found this site yesterday and have read quite a bit, and have tried to post some questions. I guess I don't know what I'm doing, b/c I 'm not getting any responses. Can someone take me under their wing and show me what to do?
I'm really excited about this site. It seems that you all are a big family!! A family that understands one another, and right now that is what I need very badly!!!!!
Anyway, let me tell you a little bit of my story.
It started 5 yrs. ago after the birth of my son. I just didn't seem to be getting any better. I went to numerous dr's.and had 3 surgeries to remove some scar tissue. Finally I found a dr. who diagnosed me with vulvodynia vestibulitis (a illness that affects your perinum area, I could not sit, walk stand, or have intercourse, b/c of the excrutiating pain.) the pain with this illness is so intense that they diagnose you w/a q-tip test,(they barely touch you w/a q-tip, which causes excrutiating pain) I had 2 surgeries to remove my vestibular glands which seemed to help quite a bit. But not completely. Finally about 2 yrs. ago I was diagnosed w/IC. I say finally b/c I had an answer!!!! In the beginning I did all the therapies which included biofeedback(made me pee on myself for 2 days after) instillations once a wk., elmiron, atarax, elavil, percocet(I was very fortunate to have found a pain mgmt. clinic during my battle w/vestibulitis)and hydrodestintion every 6 mos.
All the side effects really scared me. So about 6 mos. ago I quite all my meds.And to tell you the truth, I told myself that I wasn't sick, this wasn't anything serious, I mean hell it couldn't kill me!!!! I guess I went into extreme denial.
That was until yesterday(5/4). I have been in a lot of pain for about a month now so I went to the Dr. He gave me a severe reality check!!! He informed me that I WAS SICK, THAT I HAD A CHRONIC ILLNESS. AN ILLNESS THAT I COULD NO LONGER DENY!!!! I did not want to hear that! I have cried for 2 days now.
I do not want to be on disability. I want to finish school. I have a son to raise ( alone, his father felt all of this to be to much to handle!!) I find myself extremely depressed and to tell you the truth if it wasn't for my son I would probably just quit!!!!!
All together I have had 13 surgeries.
Sorry for the long letter, I just need someone to talk to. I am so scared and feel so alone. No-one understands. Since I don't look sick they don't believe that I am. To quote my mother "Get up and do something, There is no way that you are in that much pain, quit being a cry baby"
I feel like I am being a baby about this sometimes.That I whine to much.
Again sorry so long!!!!!!!
:headbang: Does anyone else feel this way?
:cussing: :help:
Christal

[christalbean]

Hello!!!
I figured out how to work everthing. Like how to find my replies!! So please ignore my quest for help!!!! :bonk:

[vm]

Hi, Christal! :welcome: Have you started back on the meds yet? Seems like it would be a really good sign for your future that the meds helped you so much in the past. What's your treatment plan at this point?

I was fortunate that I had family and friends who believed in me and in my symptoms. BUt many, many others here have talked about unsympathetic friends and family so you are definitely not alone in that.

I'm so glad you found us so you won't feel so alone. And good for you keeping trying even after not getting responses! We're here for you, sometimes we miss a message here and there, but we're here anytime you need something. :)

[VickiB]

Welcome to ICN Christal!

IC is a really, really tough disease to have. And I think a big part of it is as you say, 'you don't look sick'. So there's such a tendancy among those around us to think we're making a big deal out of nothing. Just get up, quit dwelling on it, and it'll all go away! Yeah, right! On the most part I am lucky in having strong support from my close family members. Still, they don't really understand what I go through. I felt very much alone until I found this board!

Have you tried the IC diet yet? That one change made a world of difference for me in the amount of pain I was in. The diet information can be found in the handbook: http://www.ic-network.com/handbook

I want you to know that while it may seem like your life is in the dumps right now, most of us do find treatments that help. Once you stop trying to deny the realities of IC, you'll be on your way to getting better!

Again, welcome!

Vicki

[kelly McC]

Welcome Cristal,
Glad you found us.One thing you can do is have people read some of the information from the handbook send them the link or print some of the information. Here is a link to the handbook http://www.ic-network.com/handbook/ .
The diet can be very helpful. It is sometimes hard for loved ones to understand or they deal with things there own ways. We are here for you. Are there any support groups in your area? Are you on any treatments now ?
Huggs,
Kelly

[macylynn]

Welcome Christal!
This is a wonderful place to be!
I understand your frustration with people not understanding. I have been out of work recently due to a flare and today when I came back, my boss asked me; "Are you better now?" Well no, but I feel good enough to go to work! I will never be fully better!!!!
YOu came to the right place. It sounds like you have been through a lot. Take the time to ask whatever questions you need answered! We are here for you! :welcome:

[JenG]

:welcome: Christal!
Glad you found us. I have felt the way you have, just wanting to give up, but stick with it - you can do it! This is a great site and you will get lots of support, especially since it is a hard disease for most people to understand. The symptoms are invisible so they say you look well and just don't get it. If you can get past the side effects, they sometimes lessen over time, the meds have really seemed to help me alot. You are lucky to have a good pain management clinic, hopefully you can continue to find the right combination to relieve your pain. Hang in there! :grouphug:

[christalbean]

I can't tell you enough how much I appreciate all of you.
Tears of joy are falling b/c now I have people who understand me!!!

Don't get me wrong my family is really trying to understand. I took your advice and printed up some info. for them to read.

What really made them understand is the fact that many sufferers often commit suicide for lack of understanding, and the pain that they are in!!!
:confused:
I hope everyone here knows that is not the answer. It's just so heartbreaking to hear of things like that. And knowing that maybe if they knew of this site or had someone to listen and understand that would possibly never happen!!

if anyone ever needs anything, feel free to let me know!!!
:grouphug: