Help :(

[Alex toby]

I am doing self research about IC . I think I have one!.
I live in the middle east .. and hospitals are not that professional.
I need your help!! Here are questions I need you all to answer for me..


1- do you wake up at night because pain:
"You go to sleep at 9 pm ... pain wakes you up at maybe 1 am or 3 am"?

2- Do you feel pain as soon as you wake up in the morning? Or it would take an hour or two for pain to start?, in other words .. Dose it hurts less? In the morning.

3- I had a terrible Depression 5 days ago... it reached the state where I was sheviring and almost fainted …I woke up.. And the pain was gone … I was pain free for 3 days …now its back Did you had a similar experience??

4- I don’t go that much to the toilet .. 3 -6 times a day .. Though I feel little pain.


Do you think I have IC ?
And if I do have IC what is the proof?
Is there any special thing you can find in a IC patent bladder or something ?


Thanks for help.

[icjen]

Hi there, and welcome to the boards! Sorry for the pain you're having.

You'll find on the forums here that people have many different symptoms of IC. For me, I do have pain like you, but I also have frequency and urgency, retention at times, and pressure. Some of us have only pain, and others only frequency.

I would advise you to see a Urologist as soon as you can to find out what's happening with you. To dx IC, there are several tests that could be done, such as: Hydrodistension (bladder stretches with water, under anesthsia, to see if you have little pinpoint bleeding and/or ulcers), PST (two liquids are put directly into the bladder to see if you react to the solution), cystoscopy (done in office to rule out other possibilities of symptoms), or the doctor could make a dx based of your symptoms alone.

I hope you find some answers for your cause of pain, and wish you pain free days ahead.

Hugs,
Jen

[ICNDonna]

The Patient Handbook at http://www.ic-network.com/handbook will help answer your questions. I agree that you need to see a urologist.

Donna

[Katrina]

1- do you wake up at night because pain: I used to yes.
"You go to sleep at 9 pm ... pain wakes you up at maybe 1 am or 3 am"?

2- Do you feel pain as soon as you wake up in the morning? Or it would take an hour or two for pain to start?, in other words .. Dose it hurts less? In the morning. Varies sometimes the only time I hurt is in the morning.....sometimes activity is my big trigger or I don't notice it until night time.

3- I had a terrible Depression 5 days ago... it reached the state where I was sheviring and almost fainted …I woke up.. And the pain was gone … I was pain free for 3 days …now its back Did you had a similar experience?? No but you should definatly talk to a doctor about that!

4- I don’t go that much to the toilet .. 3 -6 times a day .. Though I feel little pain. When my IC is flaring I have a constant sensation of having to go...I just don't believe that feeling like I have to go means I should so I have ignored that a lot and my frequency is no where near what it would be if I went everytime my body felt like I should.


Do you think I have IC ?
And if I do have IC what is the proof?
Is there any special thing you can find in a IC patent bladder or something ?


I don't know...you asked many questions but didn't share much about your symptoms other than pain. Are you agrivated by diet? Do car rides bother you? When did your symptoms begin?

the PUF questionaire and some diagnostic tool such as a resuce instilaltion, potassium sensitivity test, or the hydro. I also think trying the diet is a good diagnostic tool.

If you have ulcers and when biopsied there is no evidence of something other than IC that is definate proof of IC but not having such does not mean no IC.
http://www.ic-network.com/forum/showthread.php?t=20369&highlight=newsletter
PFD newsletter posted http://www.ic-network.com/forum/showpost.php?p=256636&postcount=11 Many times PFD is the big problem for men if they have IC or even if they have something else or did but don't anymore....it is something you should look into.

I have done a lot of research on male IC and have surveyed male's on their IC let me know if you would like to see my notes.

http://www.allaboutic.com/html/aic/men.jsp;jsessionid=OVCACZPCR0S52CQPCCGTC0YKB2IIQNSC? male IC diagnostic test (PUF questionaire for men)

[Alex toby]

Hi ..thanks everyone.
I work as news reporter assistant in Iraq
its so disturbing atmosphere, and having IC at this specific time of my life is not a good thing at all !! add to that there is no reliable specialized hospitals here.
so I am kind of lost !!

Thanks for help Jen, Donna and Katrina..

here is some answers and questions for you Katrina:


1-You asked many questions but didn't share much about your symptoms other than pain.
I don’t have any other symptoms other than pain Katrina.


2- Are you aggravated by diet?
Last night I did this test : I drink all the coffee and tea in the world and hit it with a nice and spicy BBQ chicken, Mahmood -my camera man- told me to feel if the pain will increase.. but nothing changed its still the same pain. I don’t think food change that much. Mahmood told me its all in my head !


3-Do car rides bother you?
Bother me physically or psychologically? Psychologically yes car rides bother me
Last time I fainted in my car and I was alone in the desert ever since car rides are such mental nightmare for me especially at night.



4-My symptoms started in September; I don’t have any history of UTI problems.
I did urine test and was UTI negative and did test for prostate and also the doctor didn’t find anything unusual


5-If you have ulcers and when biopsied there is no evidence of something other than IC that is definate proof of IC but not having such does not mean no IC.

I don’t have any ulcers, I kind of feel better today after my friends told me to not panic and take it easy .. is it possible to be in remission for 3 days and pain comes back after such short time?

I would have to say that I have a bad habit from along time:
I empty my bladder as soon as I feel a little bit of urgency

I did your test and here is my result :


“Your Results
Although your score does not indicate a high likelihood that you have a treatable but painful bladder condition called interstitial cystitis, the only way to know for sure is to make an appointment with your healthcare professional. Be sure to print out this assessment, as it will assist your healthcare professional in determining whether you may have IC.
Please remember that the results of the questionnaire are not a diagnosis of interstitial cystitis. Only your healthcare professional can provide an accurate diagnosis.”

I need your help .. I am interested in your notes.
Thanks and I wish you all the best.

[Katrina]

((((((hugs))))))

There is no set time for how long a remission lasts. When I was slowly improving I would have a lot of flux between good and bad days. I think that is entirely possible.

Does heat or cold help? Since even if you have IC male IC usually means Pelvic Floor Dysfunction I wouldn't be surprised if that is your main problem if you can't tell diet affecting you. I will Private message you and find a way to give you may notes.