How can you be sure you have Interstitial Cystitis?

[rosezclark]

I know IC is very different for everyone, but I sometimes feel like Im not in the right type of discomfort to have IC.

I don't have:
back pain
bladder pain
pelvic pain
I have no urgency or frequency
I have no pain durring intercourse

The only discomfort I have is:
burning right before I void
burning for hours after I void
burning after intercorse

I read so many post and feel so horrible for all the people suffering from
awful IC symtoms, mine is just burning, really bad burning.

Could it be something eles besides IC? I have had blood and urine tests, so I know it is not an STD. Could it be Endo.?

If anyone can comment on this that would be great.
Thank you!

[Briza]

Hi Rosie,
I can't say if you have IC or not...but even tho I have all of the the symptoms you don't have, sometimes I do have just only burning: in my bladder, right before voiding, and occasionally a little pinch of burning right after voiding, and yes the burning after sex. My symptoms are so varied, sometimes I have ALL of them at one time, sometimes a combo of a few of them and sometimes just one symptom. It would be great if you don't have IC:) but if you do or even if you do not, please don't feel that because you only feel a few of the symptoms that it diminishes our understanding for the pain and the disruption of your life that you are going thru! Burning IS pain, it is just one of many types of pain that IC patients experience, and the burning feeling can be disabling...the good thing is that there are so many treatments to try to help you with this symptom, whether you have IC or not. But definitely, if you are not comfortable with a diagnosis of IC (have you been dxd?) please seek a second opinion and please continue your research! Best wishes,Bri:)
PS...my IC symptoms began as just mild burning in my bladder and mild burning right before, during, and after voiding and major IC belly. And when I have burning I have urgency...meaning the urge to urinate, but can only get a few dribbles out.

[rosezclark]

Briza,
Thank you for the fast reponce. I am going to see Dr.Payne at Stanford Dec.30th of this year. Im hoping he can help me understand alittle more about why I feel this way and how to get better. My Uro now is a very smart woman, but she dosent give me any information or hope.
She just told me I have IC and to take Elmiron, and thats it.

[NancyB]

Hi Rosie -

Could you tell us how old you are?

NancyB:)

[ICNDonna]

Dr. Payne has a very good reputation in the IC community. Hopefully he'll be able to give you a definite diagnosis.

Warm hugs,
Donna

[Sparkleh]

When you say burning, do you mean in your bladder or down below? If it's the latter that could be vulvodynia. Just a thought. xx

[rosezclark]

Nancy,

I'm 22 years old, and have had what my Doc thinks is IC since Aug of 2007

[rosezclark]

Sparkleh,

The burning is "down there" not high up in my bladder. What is vulvodynia?

[Briza]

Rosie,
There is a vulvodynia forum here on ICN ...if you read through the threads and posts there you should get a better idea about what it entails...you can also google vulvodynia and find a lot of info on it. Literally, it means "pain in the vulva," but the symptoms often present as burning, rawness, itching, skin/membrane hypersensitivity, pain/burning/rawness after sex, etc., in the vaginal and vulvar areas rather what most people would describe as pain. A lot of women w/ IC have some vaginal symptoms, it seems; many others actually have vulvodynia, in additon to IC. I have vulvodynia, vulvar vestibulitis, pelvic floor dysfunction (which ofen leads to VV) in addition to IC.
Best wishes,Bri:)

[yvette]

My first guess is that you aren't drinking enough water so your urine may be really concentrated. Sex...depending on the position and if you have a lot of it can definitely mess with your junk down there. And if you don't have enough lube, it's definitely going to burn afterwards with all that friction.

When you are at home you could try keeping a spring water bottle that comes with those squeeze tops, keep it in the fridge and use that for after sex or after urination and just squeeze clean cool water down there. I know it does help others and they do sell a special bottle here for that....but I'd just try refrigerated spring water first and see how that goes.

And of course, keep hydrated! :)

[rosezclark]

I will look more into this.
Is there any chance I do not have IC?
Is it possible to just have vulvodynia?

I drink so much water all the time, so I dont think that could be it.

Thank you all so much for your help!
Muah!

[carla_2004]

Rose, when you go for your appt. later this month, be sure to document a voiding diary/log (Dr. Payne's office would have sent it to you) for several days.
This will be helpful as the doctor can tell quite a bit from this information.

Be sure to get directions for which building the Urology Clinic is at. Otherwise, you will drive around and around and get frustrated. Here is my helpful input: When you turn onto Pasteur from Sand Hill Road, take the second left, which is Blake Wilbur Dr.. Just before the Cancer Clinic (#999), there is a parking garage (full day costs $12) on the right. The Urology Clinic is across the street from the Cancer Clinic in a 3 story building at 800 Blake Wilbur Dr. Dr. Payne's office is on the 2nd floor.

If you get lost, then stop any security person you see for directions, or at any building front desk.

Dr. Payne will give you a very thorough examination, he is a top rate diagnostician.