Area of pain moving around....help!

[soccermom32]

For the 5 months I've been plagued with IC, I've always had pelvic pain with no frequency and/or burning. SUDDENLY since my Thursday rescue instill in the doctor's office, I've had urethra burning and spasms and NO pelvic pain.

I don't know what is worse, but I think the urethra spasms are worse. :rant:

Does this happen to anyone? What could have caused this? Can instills themselves cause this?

Factors that could contribute (what do you think?)

-I had my period heavy the day of my instill and used a tampon for the first time in 5 months. On Tuesday before my instill I had an internal massage by the PT.

-Nutrionalist has me eating all kinds of greens. Kale, broccoli rabe, bok choy - could these in themselves be causing me problems?

I used the aloe and msm gel for 2 days. I thought it worked wonderful but I'm still flaring down there. I'm wondering if the gel combo could be making it worse not better.

I hate IC. Hate it hate it hate it hate it hate it. I read on the internet today that a patient's quality of life living with IC is comparable to someone in stage end renal failure. Do you think thats true? Will I ever be pain free??

:pray:

[GriffsMommy]

I'm sorry you're feeling so horrible. I've only been cathed a few times and it did cause some burning for me but I have uretha burning alot of I don't drink a lot of water so it's something that I'm used to. I wish I had more advise for you but I would say it could have been your period or the cath. Do you have any azo? Anytime I really start burning that is the first thing that I run for and up my water intake alot and that seems to help me. I hope that someone else comes along with some more advise and hope you start feeling better soon.
:grouphug:

[Berkshire Road]

The tampon could be the culprit. The last time I tried to use one, I went into a flare-up almost immediately.

[soccermom32]

I thought it could be the tampon too - it was irritating to pull out. Do you think it could cause 4 days of discomfort though?

[PickPink]

Oh I definitely know where you are coming from!! I had my first instillation 2 weeks ago, and I did feel relief from my normal bladder pain (not 100% but definitelly significant!) for nearly 2 days. But I couldn't even enjoy my short-lived relief because my urethra was burning for 4 :cussing: days!!! It was terrible. I have a very narrow urethra, and even though they always use the tiniest baby cath on me, it never helps. I bleed every time :( But on Tuesday, I requested them to use the pain-relieving gel I heard some other women talk about.. and they didn't have "the good stuff" but they did have some gel that would slightly relieve the pain. Well it definitely made a difference. It still hurt during the precedure, but afterwards there was almost no burning. I always wipe myself before redressing, and I could feel a slightly numb feeling. I was so appreciative :bow: Next week they said they will have "the good stuff" and so I am very excited about that. I would definitely ask your doctor to use the gel during the cath, instead of him just telling you to use it later. It definitely made a big different to me. And my little tiny urethra was thankful :bunny:

[Berkshire Road]

About the tampon -- oh, yes, it could certainly start off a reaction lasting four days or longer. Once you have irritation and pain, it tends to self-perpetuate for a lot of us, anyway. Just take a look around the boards, and see what people have succeeded with for urethral pain.

I agree, the urethral spasms I get (rarely, thank goodness) are really worse than the bladder pain. It's a sensation I could not imagine before I had one; could not mistake for anything else when I did have one; and could never adequately describe to anyone who hasn't had one. OW!

I hope it's getting better.

[verdicries]

and i'm flaring NONSTOP!!! i was bad before...but now the urethral spasms are 100,000x worse and i'm having a hard time peeing!!! the nurse said she could feel the bladder spasms as she was putting the instill in...btw they don't even use a catheter w/me. they use a PEDIATRIC FEEDING TUBE and it still hurts like a u know what. i'm NOT having another instillation done that's for sure!!

i wish i had words of advice for you...i don't. just wanted to say i know how you feel. the urethral spasms are worse than bladder spasms (for me anyways). just hoping i don't get a uti from the instill.

sigh.