IC or something....

[n2fotography]

I have always had bladder problems. I had infections when I was a child and as I went through puberty I had a lot of frequency problems with my period and ovulation.

About 15 years ago I started with pain, pressure, frequency and burning on a daily basis. I couldn't sleep or get comfortable. I was diagnosed with endometriosis and ended up having a hysterectomy but the bladder problems didn't go away. I went through 4 urologists. I had cystoscopy after cystoscopy, awake, asleep, with hydro, without. I had a bladder biopsy. I had an instillation of heparin and still no diagnosis except for neurogenic bladder. I finally gave up and learned to live with a great deal of pain.

I eventually found this site and have learned to use Prelief, watch my diet and other things that help like baking soda in water. But, this stuff gets old.

Yes, I know everyone will tell me to find another urologist and get a diagnosis but I have no health insurance at this point and quite frankly I was so traumatized by the last go round with urologists and gynocologists that I don't think I could handle it right now. Oh, and I had a major back surgry right after the hysterectomy.

I guess I just needed to throw this out there and whine a bit. Thanks for letting me vent.

Peace to all.

[rosesitty]

I understand what you're going through. I've never been "officially" diagnosed either, but every uro I've been to says I have IC. It's a hard thing to deal with when you know there is no cure, and you feel like there is no hope. There's lots of options to try, you just need to have faith that there's a great uro out there who can help you. We all need to vent. I hope you find you way on your healing journey.

[ICNDonna]

:grouphug:

Donna

[armslee]

Foto,
I am really sorry about all you have been through.
:grouphug:
I too have had problems since young childhood and wasn't diagnosed until 4 months ago. You have really found a great place for encouragement, information and support. While there are meds that are over the counter, you should really be seen by a doctor. Do you qualify for public assistance? Could you go through your local health department?
You may also qualify to get prescription medications at a reduced rate or even free from the manufacturers.

I hope that you will find a doctor soon that understands you and can give you a diagnosis so treatment can begin soon.

Peace and God bless,

[n2fotography]

Thanks for the well wishes.

To answer a few questions....

We make way too much for public assistance, we just don't have insurance through our employers.

If I had any trust at all in doctors I could probably come up with the money, although it would hurt right now, but I really don't have any hope that they would be any more helpful this go round than they were the last go round. I was in the "system" and was shuffled from doctor to doctor, test to test and it was all for naught. I don't suffer that foolishness well.

[VickiB]

I understand. I, too, went to numerous doctors over a 28 year period without any results. (I think most had probably never heard of IC) Some wanted to yank my uterus, some hinted it was time for a shrink, many were sympathetic but totally perplexed with my symptoms, and then there were those who I'm sure wrote 'drug seeker' as soon as I left. I became pretty good at accepting that I'd just have to live with this misery and gave up on the medical communtiy altogether. I had no insurance either, but it wasn't that I couldn't pay,...more like one gets tired of paying out a lot of money when receiving nothing in return! Eventually I tried one more time, and that Uro diagnosed and treated me with good results.

I'm sorry that you are going through this and wish I had something more to offer besides commiseration! It's an awful feeling when you can't seem to find any answers!

Hugs,
Vicki

[Romans8:28]

I am sorry for all you've gone through! a:grouphug: This is a great place to vent!
We also have no insurance and my out of pocket expenses are difficult so truly understand! I too have suffered in the past with doctors or medical staff that did not understand! I would encourage you to find a doctor who specializes in IC. I have often thought if I did not have my wonderful doctor, I would try to see Dr. Moldwin. He seems in everything I read to be soo full of compassion for us!

I understand the burden of the cost and travel expenses etc. but you may call and talk to them. He maybe be able to see you and set up a treatment plan that a doctor closer can follow.

If not I really would encourage you to try again. Call around and ask if they specialize in IC etc. Personally if they don't do rescue instills, I write them off but that's just my opinion.

IC for me has been very difficult but with the help of this message board and a doctor who was willing to work with me I have found many excellent coping tools. I don't know how I would live without these! Was even able to go skating with my kids tonight, with our church. I really hurting this am, was able to do an instill and the bladder pain left!! :)!

Hang in there! And please feel free to pm if you need to talk or suggestions!
Hope you feel better soon!
a:grouphug:

Shelly