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 jen424@earthlink.net.

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

[ICNDonna]

I'd like to offer another welcome to the IC Network. I'm glad you have found a doctor who is helping you --- it can make a huge difference. The Patient Handbook is at http://www.ic-network.com./handbook/ and I encourage you to read all of the information it contains. And if you aren't already following the diet, I encourage you to give it a try.

There is some thought in the IC community that IC may be triggered by trauma --- in my case it was a major abdominal surgery. I was never a victim of sexual abuse.

Sending a welcoming hug,
Donna

[Katrina]

WELCOME TO THE BOARDS!!! I have heard of others being sexually abused that have IC but not often. So sorry you went through that.

Your horor IC story is a familiar path....I am so sorry. Doctors can make me so mad.

I am thrilled you still have hope. I hope that u are pain free and symptom free soon.

[Julie Smith]

Dear David,

I feel so badly for all that you've been through but am so happy you've finally been diagnosed and have a path to heal. Even though ic is a &^%$#@ disease, at least all your symtoms have a name and reason. It's not all in your head, as you knew all along.

I thank God I was never sexually abused. Perhaps mine started after my hysterectomy 12 years ago and I went from dr. to dr. and pretty much heard, like you, it's not a uti. Like others my
thoughts were then maybe it's all in my head. So the pattern remained for all those years until my diagnosis a year ago. I also think you are so brave to post this question along with your name. Please keep posting.

Warm hugs go out to you grouphug
Julie

[Jessica in Arkansas]

Dear David,
You are on the right track, if you have found a Doctor that you feel you can work well with and works well to deal with your pain issues it is a God send. I am still to find and adequite Doctor who truely understands.
I am so sorry that you too have to be another diagnosee, but this does not mean an end to what once was.
IC is challengeing, rough, sometimes manageble, relenting and remisssive, unrelenting and does not give in to submission. You are a strong person to have survived to this point and you are worth all the money and time in the world to figure out what is going to work for you.
I will pray as I always do, for the release of the pain, emotions, and barring factors that sometimes limit IC survivors in all we do. These limitations can also be launching pads and take us into a new realm of health we thought we would never discover.
May the grace of God be with you!
JessicainArkansas
If you need someone to talk to e-mail me @ svohboy@eathlink.net, a friend is always a click away!

[YankeeCandle224]

Dear David,

I want you to know you are not alone. I would guess 99% of us have been to the type doctors and ER's that you have been and I'm so sorry that you had to experience that as well.

I'm hopeful for you, it sounds like you have a good doc on your side now, and you can cast those feelings of self doubt in the trash.

I've been on my soapbox here several times about opiods and their use in chronic pain and how animals are treated better than we are.

You came to the right place, most definately. I have been here a short time, but have learned so much, met some great people, and enjoy coming to the board every day.

One thing I'm not clear on, did you find out why your legs hurt? Do you have fibromyalgia by chance? My legs, my shins especially, cause me great pain and it is caused by the fibro.

Welcome and visit often, there is always something to learn here and always a helping hand.

Hugs, Sandy

ps. I also take 80 mg of Oxycontin, but I take it 3 times a day and that extra dose makes a HUGE difference in my pain control. If your pain is not managed by the 2x a day, mention that you know people that do take it 3 x a day and that they have more success. I also take norco which is hydrocodone with VERY little tylenol. I was killing myself with Advil and Tylenol, and my pain doc decided that I should have as little tylenol as possible. Please be careful should you have breakthrough pain, and watch out for any NSAID (Advil, Celebrex, Aleve, etc) as they will erode your intestines, I know this for a fact as I about tore holes in my GI tract and have severe erosions we are trying to heal with Nexium. As for tylenol, the liver can rebound, but if you take large amounts of tylenol for an extended period, your liver will suffer and so will you.

I strayed there, just wanted to offer you some advice. I'm notorious for long posts lol.

Sandy

[YankeeCandle224]

Sorry left something out.

I have been on so many boards, mostly fibro boards and CFS boards, but there IS a trend for people that have PTSD (post traumatic stress disorder) that have these strange illnesses. I can't give you stats on it, but there are MANY of us, who had a bad childhood or traumatized childhood who have manifested these illnesses.

My theory is that after so many years of abuse, of your body using the fight or flight function, we wear our immune syndrome down and are more susceptible to disease. This does NOT mean its all in your head, it means our immune system is fried, miswired after living a life of he** as a kid.

Again, I wish you the best. Sandy

[gwyn]

hi david, first of all, welcome... kissing this is the best place to be when u have ic... there are so many wonderful people here . abt your qn, now that u mentioned it, i have been sexually abused in a way before.... that is- i lost my virginity wheni was raped . i dont know if it would mean anything but if you would like to talk abt it, pls email me...

hugssssssss, gwynnieeeee

[Von]

Hi there David,

Its awful when you first get diagnosed but don't let anyone make you feel guilty for taking pain meds. You know your own body and what works for you.

About the abuse, its awful that it happened to you and I hope you are coping with it as a adult, if not seek some counselling - just talking can help. Or just come and talk on the IC board if that helps.

The connection with IC and abuse is not fact. From what I've read in books, some doctors make this connection because they feel that IC and other 'vague'(in their opinion) diseases are stress related and connected to repressed emotional issues such as those that can have happened in childhood. What happens to us as children has a profound effect on us as adults and can make us prone to stress and depression - but then again IC is a disease. Stress can make it worse and focusing on the symptoms can make them feel stronger but I doubt that abuse can actually 'cause' IC. Some people get IC after surgery, some after coming into contact with chemicals in swimming pools etc. It is usually organic in origin as opposed to emotional (but some doctors don't accept this).

There are a lot of people who have IC who have never been abused and a lot that have been abused and have not got IC or IBS or any other disease that doctors think is connected to stress.

I hope you get the help you need and feel better soon.

Von x