icnmgrjill
03-08-2005, 12:47 PM
Here I sit on a sunny Tuesday afternoon. The sky is a gorgeous blue. It's about 70 degrees outside (well, it really is California), the trees are softly blowing, the hayfever has begun in many.... and, woe is me, I'm struggling with an IC flare. In fact, I spent three whole days in my home with an icepack between my legs, a heating pad on my belly and cursing the fact that I couldn't go out and enjoy our first real Spring weekend. It's also the strangest flare I've ever had.
Beginnings
It began last Thursday night just after dinner. I had just finished my dessert (a diluted cafe mocha... which I can normally tolerate), sat down to watch SURVIVOR when, whammo, my urethra went into spasm. Since I've rarely had urethral spasms, I really jumped. Urinating was very painful and it felt as if someone had cut my urethra open. Very sharp... hot pain. Yowza! Urinated about ten times that hour.... and wondered what the heck had happened.
It took about 30 minutes to realize that this pain was not going to get much better so I took my normal 1/3 dose of pain medication. Zippo. Nada... It didn't help at all. I thought, hmmm., maybe I have a UTI. Pulled my bathroom apart at 10pm looking for my UTI test kits only to remember that I had, indeed, thrown them away. Arrrgh! Out of desperation, I took an antibiotic anyway... because the urethral burning had only happened one time before... when I had a bladder infection about five years ago. Yes, I know. Never self medicate!!! I shouldn't have... if you read to the end of this story!
Thank god for perineal wash bottles. I filled mine with cold water and sprayed myself as I was urinating... and it helped reduce that horrible burning sensation. Drank several glasses of water to get my urine super diluted. Hydroxyzine helped me get to sleep... but was up several times.
Day #2 - The flare changes
What started out as just urethral burning moved into a deep bladder pain. My bladder felt very full and heavy. Dashed to my office and grabbed a UTI test kit. I was negative.. plus no fever. Stayed at home, on the couch, with a heating pad and a cat that slept with me all day. Comforting she was... comfortable my bladder was not. Arrghh! On a scale of 1 to 10, the pain was about a 6.
My pelvic floor muscles were started to spasm alot... and I had pain along some of the classic muscle referral points... especially below my belly button.
Day #3 - Bladder Pain becomes vaginal pain
On Saturday, my flare morphs yet again. Instead of bladder pain, I'm now having deep vaginal pain like a horrible yeast infection. I had no other symptoms... that I associate with yeast infections... but used some yeast cream anyway. Made it wayyyy worse. Clearly, the vagina had become supersensitized. Another day in bed... tears of worry heavily shed.
Had the classic emotional reaction to a flare. "Please god, don't let this keep going." My family was worried. The pain meds kept me dozing most of the day... with dreaded, gasping trips to the bathroom. Did I mention that the urethral burning never stopped?
Day #4 - The Vulva Awakens Angry
Sunday should have been called "Attack of the Killer Vulva." Wow.... nearly went to the ER... had searing hot pain on my vulva. Out of desperation, I made an ice pack which I shoved between my legs... and it HELPED! For the first time... ice helped me. Normally, heat pads are my friend.
Day #5 - It Magically Settles Down.
Yesterday, I woke up with little pain and only a tiny amount of burning. I'm so relieved... thank god. I pointedly did not use any yeast med or antibiotic that night just off the chance that either were making me worse... and I believe they were. I was able to work all day yesterday... no meds... only slight discomfort. By the end of the day, it was hurting abit... but, all and all, I felt lucky
Day #6 - Today
:::deep breath:::: Today is better.
---------------------------
What I think happened
Diet once again triggered a horrible flare. But, in this case, this flare was also a classic example of how bladder pain can quickly become pelvic pain. That's why so many now consider IC a pelvic pain syndrome. Clearly, it began in my urethra... the nerves became sensitized and involved then my bladder, my pelvic floor muscles, my vagin and eventuall the vulva. I think I'm lucky that with the cold packs, wash bottle and pain meds, that I was able to get it nipped in the bud... because it was very painful.
One thought that I kept coming back to was a discussion during a researcher interview two weeks. He was focusing on the concept of a visceral pain syndrome and how important it is treat all sources of pain... and to "turn down the volume" of all the pain involved. Thus... I remembered that and tried to do that. I used ice for the urethral, heat for the lower belly, hydroxyzine and pain meds. I think it was a good strategy... however I did make some mistakes.
Mistakes I made
#1. I totally screwed up my diet and had 5 acids that day. OJ, three herbal teas for my kinda sore throat... and then that darn cafe mocha. I think it totally irritated my bladder.
#2. Taking the antibiotic was stupid... just STUPID with a capital S. Why?? Because I didn't have positive test result and because antibiotics can irritate a bladder. I think that's what made it become bladder pain rather than just urethral pain. Self medication is always a risk.
#3. Taking the yeast medication just added fuel to the fire. I know that I react to creams... and that they can cause a burning sensation... and that's what happened the next day. My bladder pain was joined by intense vaginal pain. Oww!
Lessons Learned
A. Don't self medicate
B. Get lab tests done... rather than guess!
C. Cold can works for a hot, burning pain
D. Resting helps. I can only guess how much worse it would have been if I had tried to do anything physical. My body needed a timeout!
That's the news from the ICN offices... where I sit as one grateful, yet still tender... and as a somewhat humiliated... IC patient.
Jill
Beginnings
It began last Thursday night just after dinner. I had just finished my dessert (a diluted cafe mocha... which I can normally tolerate), sat down to watch SURVIVOR when, whammo, my urethra went into spasm. Since I've rarely had urethral spasms, I really jumped. Urinating was very painful and it felt as if someone had cut my urethra open. Very sharp... hot pain. Yowza! Urinated about ten times that hour.... and wondered what the heck had happened.
It took about 30 minutes to realize that this pain was not going to get much better so I took my normal 1/3 dose of pain medication. Zippo. Nada... It didn't help at all. I thought, hmmm., maybe I have a UTI. Pulled my bathroom apart at 10pm looking for my UTI test kits only to remember that I had, indeed, thrown them away. Arrrgh! Out of desperation, I took an antibiotic anyway... because the urethral burning had only happened one time before... when I had a bladder infection about five years ago. Yes, I know. Never self medicate!!! I shouldn't have... if you read to the end of this story!
Thank god for perineal wash bottles. I filled mine with cold water and sprayed myself as I was urinating... and it helped reduce that horrible burning sensation. Drank several glasses of water to get my urine super diluted. Hydroxyzine helped me get to sleep... but was up several times.
Day #2 - The flare changes
What started out as just urethral burning moved into a deep bladder pain. My bladder felt very full and heavy. Dashed to my office and grabbed a UTI test kit. I was negative.. plus no fever. Stayed at home, on the couch, with a heating pad and a cat that slept with me all day. Comforting she was... comfortable my bladder was not. Arrghh! On a scale of 1 to 10, the pain was about a 6.
My pelvic floor muscles were started to spasm alot... and I had pain along some of the classic muscle referral points... especially below my belly button.
Day #3 - Bladder Pain becomes vaginal pain
On Saturday, my flare morphs yet again. Instead of bladder pain, I'm now having deep vaginal pain like a horrible yeast infection. I had no other symptoms... that I associate with yeast infections... but used some yeast cream anyway. Made it wayyyy worse. Clearly, the vagina had become supersensitized. Another day in bed... tears of worry heavily shed.
Had the classic emotional reaction to a flare. "Please god, don't let this keep going." My family was worried. The pain meds kept me dozing most of the day... with dreaded, gasping trips to the bathroom. Did I mention that the urethral burning never stopped?
Day #4 - The Vulva Awakens Angry
Sunday should have been called "Attack of the Killer Vulva." Wow.... nearly went to the ER... had searing hot pain on my vulva. Out of desperation, I made an ice pack which I shoved between my legs... and it HELPED! For the first time... ice helped me. Normally, heat pads are my friend.
Day #5 - It Magically Settles Down.
Yesterday, I woke up with little pain and only a tiny amount of burning. I'm so relieved... thank god. I pointedly did not use any yeast med or antibiotic that night just off the chance that either were making me worse... and I believe they were. I was able to work all day yesterday... no meds... only slight discomfort. By the end of the day, it was hurting abit... but, all and all, I felt lucky
Day #6 - Today
:::deep breath:::: Today is better.
---------------------------
What I think happened
Diet once again triggered a horrible flare. But, in this case, this flare was also a classic example of how bladder pain can quickly become pelvic pain. That's why so many now consider IC a pelvic pain syndrome. Clearly, it began in my urethra... the nerves became sensitized and involved then my bladder, my pelvic floor muscles, my vagin and eventuall the vulva. I think I'm lucky that with the cold packs, wash bottle and pain meds, that I was able to get it nipped in the bud... because it was very painful.
One thought that I kept coming back to was a discussion during a researcher interview two weeks. He was focusing on the concept of a visceral pain syndrome and how important it is treat all sources of pain... and to "turn down the volume" of all the pain involved. Thus... I remembered that and tried to do that. I used ice for the urethral, heat for the lower belly, hydroxyzine and pain meds. I think it was a good strategy... however I did make some mistakes.
Mistakes I made
#1. I totally screwed up my diet and had 5 acids that day. OJ, three herbal teas for my kinda sore throat... and then that darn cafe mocha. I think it totally irritated my bladder.
#2. Taking the antibiotic was stupid... just STUPID with a capital S. Why?? Because I didn't have positive test result and because antibiotics can irritate a bladder. I think that's what made it become bladder pain rather than just urethral pain. Self medication is always a risk.
#3. Taking the yeast medication just added fuel to the fire. I know that I react to creams... and that they can cause a burning sensation... and that's what happened the next day. My bladder pain was joined by intense vaginal pain. Oww!
Lessons Learned
A. Don't self medicate
B. Get lab tests done... rather than guess!
C. Cold can works for a hot, burning pain
D. Resting helps. I can only guess how much worse it would have been if I had tried to do anything physical. My body needed a timeout!
That's the news from the ICN offices... where I sit as one grateful, yet still tender... and as a somewhat humiliated... IC patient.
Jill