Out of denial, now just mad

[4QBee]

I was diagnosed with IC about a year ago although I'm sure I've actually had this illness for quite some time, I finally made myself go to the Dr. I got some painful potassium test done, then the "technician" or whatever she was, told me what I had, gave me a pamphlet, a perscription, and sent me on my merry way...I had no idea what this was and I admit that I'm still a little clueless. Until now, I have pretty much been trying to pretend like nothing is wrong with me, but I am just tired...This past week has been horrible. I have had pain, I've had to go to the bathroom literally almost every 15-20 minutes, and embarrassingly enough I have had "accidents"...day and night...this is very hard for me to even type. I have never said this to anyone, not even my best friend. The only person that knows is my husband and I am more than grateful to have such a supportive and loving man by my side no matter what. I know that I wouldnt be able to handle this without him.
And although I have him, I still feel alone sometimes. He doesn't know what it feels like, he doesnt know the pain, the embarassment, the fatigue from not being able to sleep for having to get up 4 times a night to go pee! He doesnt truely know the shame I feel to HAVE to sleep with a mattress pad on the bed. I just feel like curling up in a ball...there is no reason a 24 year old woman should have the bladder of an 80 year old! I'm in shape, I dont drink soda, I no longer drink alcohol...I don't know...(sigh) :cussing:
I think I just needed to get these thoughts out of my mind and I'm glad that I found this website. I feel like maybe someone will understand and maybe even be able to help me find ways to manage.
Thanks for "listening". :)

[BROWN EYED GIRL]

You sound exactly like me. Our symptoms sound similar too. I am 26 years old and feel like my life is over. I am seriously considering wearing a diaper, so I don't have to run to the bathroom every few minutes. It is embarassing and hard to find people that understand. If you want to, check out my post under DSMO installations from today. It explains my symptoms, failed medications, and my frustration. Remember you are not alone. I am here if you want to PM me anytime.

[jenjen05]

I'm 24 too. Normally I'd tell you get on the diet, things will get better, sunshine and puppies are around the corner.

But not today. I'm mad too.

The truth is, this disease stinks. It doesn't get better. What does get better is how you learn to handle what is happening to you. You cannot let IC control your life. You cannot let it win. Educate yourself by continuing to read on this forum. Find another urolgoist who will actually sit down and talk to you. Find a support group in your area if you need one. Look at how many members this board has and realize that you are not alone and you have NOTHING to be embarrassed about.

I have the same problems as you. I'm the same age as you. I used to feel embarrassed, I used to not want to talk about it. I used to want to keep eating fast food and drinking my sodas and smile through the pain and pretend like IC wasn't going to get to me. But the truth was, that the pain won't let up until you take steps to make it let up. Get on the diet and stay on it (if you aren't already)- do yourself a favor and stick to it no matter what. I "fell off the wagon" I don't know how many times. And I still have moments of weakness where I eat or drink something I shouldn't and cause myself a pain flare. But were all human. And so are you. Do yourself a favor and allow yourself to relax and be the best you that you can be.

I'm glad that you have a loving husband by your side. Give him a big hug tonight, there are many IC patients who either haven't found their partner or are afraid to date because of how IC affects our lives.

So get on the diet: http://www.ic-network.com/diet/dietcheatsheet.html
And find a good uro in your area... try contacting the ICA www.ichelp.org for a list of doctors.
And most importantly, don't give up.

In the mean time, try AZO Standard over the counter for some pain relief and frequency relief. A lot of people find that helps them (did nothing for me personally).

Also.... do a lot of research on here and become as educated as you can be before you see another urologist.

Everything is trial and error until you find something that works for you. What is in my signature below is what happens to work for me right now. But you never know, things may change. Some people have luck with the RX Elmiron. I was not eligible for Elmiron, that and I did not feel comfortable taking the drug after reading thoroughly about it, but a lot of people have seen drastic improvements in their symptoms. There's other OTC meds like Cystoprotek that help many people as well... but it also flared some people.

In summary:
Stay strong and love yourself.
Being tired is normal, I am too.
You are not alone.
Get on the diet.
Stay on the diet.
Do your research and educate yourself.
Find a new urologist you can really talk to.
Don't give up until you find the right Uro.
Give your hubby a hug.
Go buy some AZO Standard at the drug store and give it a shot.
Maybe buy some Cystoprotek or Cystaq and give it a shot.
Check out the ICN Shop for other great IC safe goodies! I really recommend the book "Heal Pelvic Pain" which has helped me a lot.

Take care of yourself. Feel free to message me anytime.

:angel: :angel: :angel:

[ICNDonna]

:grouphug: We absolutely understand. Are you following an IC diet? That can be a huge help --- I know you mentioned drinks, but there are lots of foods that can be a problem as well.

Donna

[meldy]

I know how frustrated you feel...I have been there too! I have had IC for what feels like forever. I am in my early thirties and am slowly learning to cope.
We all have our bad days...just know that you are not alone. I just recently discovered this site and am so thankful that I have.
One thing that I really find triggers my IC is stress. I work a very high paced stressful job and there are definitely days that I feel like hiding in the washroom because I am there so much. I seem to feel much better when I am not at work.
I have been taking elmiron for years and find that it really does help. It took a while to work when I first started but it was worth the wait.
Feel better soon:)

[baaaby11]

Luckily, you have found this website. It is FULL of information. Do all the reading and research you can!
I understand how you feel. I am almost 23 and dealing with something like this is really hard. Like everyone else already said, definitely try the diet if you're not already following it. It has helped my symptoms quite a bit! It's not fun to cut out tons of your favorite foods but it's way better than feeling an increase in IC symptoms! I don't think any food, no matter how good it tastes, is worth that!

[beautifulshades]

First thing is to find a URO?UROGYN that will listen and cater to you medical IC needs. Do not ever let a doctor treat your IC lightly. You are your own health advocate so do not hesitate to tell doctors how it is and when needed put them in their place! I am 23 years old and I know that feeling all to well of doctor dumb dumbs there are many of them out there. I suggest looking for an IC specialist in your area. We are hear for suppot. Feel free to pm me.Unfortunatly most all of us has ran into some sort of doctor dumb dumb at some point, so if you do have this happen feel free to ven! It will make you feel better. Also, have you started the IC diet? It will make things a bit easier. The diet is a very important step towards a healthier you.

WARM HUG AND HEALING THOUGHTS.

[vm]

The truth is, this disease stinks. It doesn't get better. What does get better is how you learn to handle what is happening to you.

For many people it does get better. In fact, most ICers do find some relief from their symptoms - from mild improvement to full remission. Do not give up hope that it CAN get better. No, it does not for everyone, but for many it absolutely does.

[4QBee]

I am sooooo happy and elated with the positive responses that I have received! I cannot explain how wonderful it feels to know that other people understand exactly how you feel and what you are going through.

I appreciate all of the comments and suggestions and I will most definetely start the IC diet and try to find a more understanding doctor as well.
Thanks again, and keep me in your prayers, as you all are in mine! :grouphug: