My Horror Story

[Duzty]

Hello,
My name is David White and I wanted to share with you my horror story of IC and how it became a nightmare to me.
I guess I would have to go back six years to where everytime I went to use the restroom, I would be hit with sudden burning and the most severe pain that I have ever felt in my life. At this point, it was only periodic and would happen maybe once a month. I went from doctor to doctor for the next five years having test after test done and was diagnosed with everything from Urinary Tract Infections to Kidney Stones. I was severly abused by alot of physicians who simply told me I was crazy, nothing was wrong, I was "DRUG SEARCHING", or so-called "Doctor Hopping". At this point I began to doubt my own self. I thought I must be crazy, because the pain became constant and my trips to the bathroom went up to as much as 25 to 30 times a day. I have alot of pain in my legs and it seems to be worse at night, when the leg tremors come. My painful condition went from a little blood in the urine and occasional pain to constant pain that I had to deal with on a daily basis with no relief or help. I have waken in the middle of the night in such pain that I have been screaming, get up go to the emergency room, be told that there is nothing wrong and that I was only looking for meds. I had to suffer with this for a long time until I found a woderful doctor named Ragi Wiygul who is an IC specialtist in Memphis. I was told I was not crazy and this was a disease. I still suffer alot from it, but now at least I don't have to suffer with the pain due to medication. I am not giving up hope that one day I will be normal again.
Good Luck to you all...
Much Love,
David

[ICNJess]

Hello David, and welcome!! I too went through that whole mess of years of trying to get a diagnosis. It took me nearly 4 years and several doctors to get diagnosed. I had diagnoses of UTI's and doctors told me I was crazy and "doctor hopping" as you put it. It was very depressing...

But it's all changed, and we are all on the track to healing, right? Just keep a positive attitude, and have faith. Welcome to the ICN family.

Hugs and love to you,
Jess grouphug kissing

[Sarojini]

Hi David... I am so sorry you are having such a hard time!! I hope your new doctor is helping you feel better and be more comfortable.

I am also searching for a diagnosis, although my doctor is now pretty sure I have IC. I go back on Feb 16, and at that time she may schedule a cystoscopy w/hydrodistention to see for sure.

Boy, I can totally relate to how annoying going to the bathroom all the time is... one day last week I went 32 times, which was VERY disruptive. So far today I think I've only been about 8 times which is good for me. I'm sure it's been difficult for you too! I don't always have burning when I urinate (sometimes I've had it though), but I do get a lot of back pain, and sometimes cramping pains in my abdomen.

I see you are in Memphis.. me too!! If you want to talk to someone in the area, you can email me at [email protected]

Welcome to the boards...

Sending you supportive hugs.... grouphug grouphug

Jen

[auntiedeb]

Hi and welcome to the boards. thanks for sharing your story with us. There is alot of support and love on the boards.

[Duzty]

Hello,

Thank you all for your very compassionate and understanding words. I am so very glad that I found this place, it maks me feel so "Not alone" with this disease. The only other problems that I am having is the fact that people seem to try to make you feel guilty for having to take pain meds. Right now I am on Oxycontin 80 mg. 2times a day and 40 Mg. Once and thank god for them, I was getting to the point to where it was very difficult for me to walk and due to proper diagnosis, a great doctor and pain meds. I was able to go back and get my law degree.

So for those of you who think there is no hope for a normal life, There definatley is.

Much Love,
David

P.S. I know that this is a very private question, but my doc. says that alot of people with IC was sexually abused as a child, does that hit home with anyone here?

[Alexa]

Hi David, Welcome to the ICN.

Thanks for sharing your story, I am one of the "lucky" ones too, that responded well to treatment and was able to go back to school, and I'm now able to work in a career I love.

As for your question regarding sexual abuse, it doesn't ring true for me personally, and I haven't heard of that correlation between sexual abuse and IC. Perhaps it's true for some people, but I just don't know about it, nor have I heard a lot about the connection of these two subjects.

Take care,
Alexa

[Sarojini]

As for sexual abuse and IC, it doesn't apply to me either. Also, I've never heard anyone say this, but I'm new to all of this.

[Nicole in ATL]

Hi and welcome David!

As for the sexual abuse history, I'm not sure about a connection either. It seems there would be much more people diagnosed with IC, as 1 in 4 girls and 1 in 8 boys are sexually abused in the US. Sad but true.

Nicole

[lalarainbow]

Hi David
I pm'd you! Everyone is great here and so much help. No sexual abuse in my life.. Abdominal surgery stirred it up for me. I am sure I had it for a long time..but the surgery made it a lot worse..
All the best!
~~Pam~~

[Duzty]

The reason I asked is because, I was sexually abused by my step-father for about 4 years. The whole time, I was in protective mode, keeping my muscles tightened as you would to protect yourself. I was just wondering how many people out there shared this relation with me.
Thanks for all your input

[dyno]

David,
I wanted to add my welcome. I hope you can get your symptoms under control and find some relief. I don't know if you follow any type of IC diet but it can be very helpful. You can find out about it and a lot of other things in the Handbook on this site. Good Luck to you,

Jolene

[Sarojini]

I'm really sorry to hear about your problems with your stepfather... I wish you all the best during your healing process grouphug

[auntiedeb]

david, no I haven't heard that either about people being sexaully abused with ic. I am so sorry that you had to go through that. I get chronic infections and get kindey stones and I know that when my uro went to do my bladder supension, he had alot of work to do, he had to take alot of scar tissue out of the bladder and the urthea, mind you had laprscopy in april to remove scar tissue from stomach and pelivc area and bowel and bladder area too. I think my chronic infections made me scarred and so did some of my kidney stones. I will be praying for you. Please feel free to pm me or email me . My email isat the bottom of the page.

[Iris]

Hi David and I would like to add my welcome to the IC message boards and family. I really felt for you going for such a long time, and in so much pain, and glad now that you finally have a diagnosis, and a helpful doc, I know that must make a world of difference to you. You have come to a wonderful family of ICers, who are dealing with the pain of IC, and leading their everyday lives, but come to help a fellow ICer with support, understanding, and compassion, and any help that is needed, and lots of information. Hope that you are feeling not as much pain and glad to have you here, a welcome hug to you, Iris. hi grouphug

[kadi]

Hi David, Welcome This is a good place!

About the sexual abuse question, the only place I've heard of that is that one IC patient mentions it as causal in her case (in her opinion) in a book called "A Delicate Balance" on living with chronic pain.
I've never seen or heard any other connections with it (and that was only one patient in one book). And it's not the case for me either.

But isn't it maddening and odd that there doesn't seem to be a common link?

Kadi