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Lisa1129
10-26-2005, 03:39 AM
HI! My name is Lisa and this is the first time I have been to your forum. As I sit here and read your stories, I feel closer to you then even my dr. Sometimes I lay in bed thinking I am so alone. I explain things to my friends and then listen like they understand but I know Im wasting my time talking to them. If Im in alot of pain and in bed they are like why whats the matter.
I starting having problems when I developed peritinitis from having my tubes tied after my fourth child. I went to a urologist and he dialated my uretha a total of 3x's. I kept telling him it wasn't working and I think it was something else. So I went to Dr#2. He said he wasn't 100% sure it could be IC but maybe Pelvic Floor Disfunction. He did this biofeedback that a tube was inserted inside me and tiny shocks were supposed to help the muscles. Didn't work. I was in bed for 2 weeks in extreme pain and could never get an appointment and the nurse was the nastiest with me. I actually was crying in pain on the phone with her. Finally Dr#3! By this time my symptoms were severe pain, throbbing bladder, sometimes I would go 20x a day other times I couln't go at all. I had such terrible burning like an infection (but it never is) and the pressure was bad. I learned on my own that certain foods triggered it, stress, sex, travel, and exercise. If I am on my feet alot or do to much I really pay for it in the evening. And of course it peaked during my period.
The bladder scan showed that the was very little urine in my bladder yet it felt so full and throbbing. Also I get this terrible muscle pain in my legs that I don't even want to walk and this exhaustion hits me like a ton of bricks. I take at least 1 nap a day, sometime it scares me. The ditropan and valium finally would help take the edge off, he even talked about Elmiron. My dr recently had done the hydrodistention under anestethia and took a biopsy. I am still waiting for my follow up with him. The burning subsided but the pressure is still there and I still go to the bathroom alot. But I noticed now that during sex my bladder spasms so bad I have to keep stopping to go to the bathroom. I have done so much research and I really believe I have IC. I don't like to sound like a know it all. When I ask my dr he just says he thinks its a combination of alot of things! It drives me crazy. This has changed my life so much. Everything I do I have to plan around my bladder. Last Christmas I had to cancel our family vacation. There are times Im supposed to do things with the kids I can't.
If anyone has any information I would appreciate it. But more importantly thank you for giving me a place to vent my frustrations.
Lisa

ICLori
10-26-2005, 04:08 AM
Lisa, welcome to the boards. You'll find a wealth of information here, and best of all, lots of support from fellow IC'ers.

Your symptoms sound just like the symptoms we IC'ers talk about on these boards.
You've already gone through the worst of it - the time before diagnosis, when you aren't on any treatment and don't know what is wrong.

Now that your doctor has done a cysto/hydro and taken biopsies, I am certain you will have a firm diagnosis, and your doctor can start treatment for you.

There are a large number of treatments for IC, each of which helps a minority of IC patients. The good thing about this is that eventually, the large majority of IC'ers find a combination of meds/procedures and lifestyle changes that enable us to get our lives back and feel pretty normal most of the time. The bad thing about this is that many of us have to try several medications before we find ones that work for us, so it requires a great deal of patience on our part.

I'm sure that one of the IC moderators will come on-line soon and give you links to the patient handbook and better advice than I can give, including tips about how to change your diet to lessen the symptoms, but for now, just wanted to welcome you to our board. You've gone through the worst of it already - just hang in there, I know it's so hard - you'll soon be feeling better.

Blessings, Lori

sweetangel2080
10-26-2005, 04:56 AM
I would definitely push on getting a diagnosis - once that happens, you can start treatment which will hopefully help your bladder calm down again.
How long has it been since the hydro? I saw an increase in bladder capacity after just 3 weeks.

curlycue
10-26-2005, 05:07 AM
Hi Lisa Welcome I am glad that you are here. This is the best site ever. If you ever need anyone to talk to here we are, you are not alone. Please make sure you are with the right doctors and get the help you need. There is hope.

Lisa1129
10-26-2005, 05:21 AM
it has been 2 weeks since the hydro. He told me I will know in 1 week if it worked. So maybe a little bit more time may help. He never told me if I should still stay on the meds. I've been trying not to take them so I know if I'm feeling better because of the hydro.

SandyRN
10-26-2005, 05:25 AM
I wanted to write you and tell you I can understand what you're going through, especially with children. I have 3 kids and I feel like all they'll remember of mommy when they're young is that she was sick and hurting all the time.

I too went from doctor to doctor before I got a dx of IC. I had to drive 90 miles from my home to go to a doctor that UNDERSTANDS IC. It seems to be a visious cycle most of us go through.

I just wanted to :welcome: you to the board, and please know you are never alone here. We've all been through something similar and are here to help you get through this.

Take care, Sandy

dyno
10-26-2005, 05:39 AM
I wanted to add my welcome and here is a link to the Handbook, http://www.ic-network.com/handbook/ you will find a lot of useful info in there. The section on diet is very helpful.

IC takes time to find the right treatment. We are all different and respond to different things. Hang in there, and come back and ask question or vent when you need to.

ICNDonna
10-26-2005, 06:01 AM
I used to worry about how my IC was effecting my children. They are all adults now and I truly believe they have more compassion for others than they ever could have if they hadn't lived with an IC patient during their formative years. My youngest has a wife who has migraines and she is amazed at how understanding and caring my son is to her. If there's nothing else good to come from my thirty plus years with IC, that's enough for me.

Donna

traceann
10-26-2005, 06:28 AM
Hi Lisa and :welcome: to the gang! You certainly have found the right place for support and information, every one here is WONDERFUL!!! :woohoo:

If you haven't already, I recommend checking out the diet too. It's one of my biggest tools in helping me keep my bladder happy!!

Hope to see you around, and again, :welcome:

Hugs! :)

bclay
10-26-2005, 12:10 PM
Welcome! It is so nice to have people who understand. And noboby understands completley unless they have IC also. This is a wonderful website! Good luck to you.

vm
10-26-2005, 01:05 PM
Just wanted to welcome you to the boards, Lisa. :welcome: So glad you've found us. :)

JaniceB
10-26-2005, 04:20 PM
Hi Lisa
Welcome to the boards. I have found alot of understanding, supporting friends here and I know you will to.

I've been struggling with IC symptoms since April, and could not get a dr to really believe me until recently. . am in a study for this now but am looking forward to trying some IC drugs next month.

I know what you mean, I have a 2 year old! But we can just do the best we can do, and try not to worry about it!

Keep us posted,
Janice

~*~Christine~*~
10-26-2005, 07:04 PM
:welcome: :grouphug:

SharonA
10-27-2005, 10:18 AM
Lisa...Sending you a heartfelt :welcome: to the ICN. So glad you found us. :)

Violin
10-27-2005, 11:58 AM
Lisa, :welcome:
I'm glad that you are already here with us. This is a site with so much information we need (I haven’t been able to read all yet though.) and where you can get so much nice and warm support you need.

I hope that you can get the biopsy’s result and start being treated very soon.

Meanwhile, I definitely recommend you to follow the IC diet. It helped me so much to get rid of my dairy pain. Take care…