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Hi Ladies, Short of exchanging bodies for a day, there is really no way for us to understand what IC "feels like" to each one of us. Furthermore, the term "flare" has always baffled me because in the periods of my life when IC has been active, it has been one, long continuous flare. When I first began treatment, I was in constant level 7+ pain. There was no break....ever. As time has passed, the pain has decreased and although I still have IC bladder pressure and frequency daily, it is a dull roar - often I am unaware- mixed with periods of absolute bladder calm. However, I still have periods of exacerbation although they never get back to my original pain level and last far less. My other symtoms are the same- waxing and waning, constantly shifting but ever present.
So what I am wondering is.......how does your IC feel for you? Is it intermittent or constant? And what about your other symptoms- if you have any others.
Thanks for indulging me in my curiosity, Katie
Hi Katie!
Hi Katie!
My past IC issues were frequency, urgency, and flares that got
longer and more intense, and more frequent as the IC progressed. Now as the IC digresses thanks to our beautiful doctor, I have not experienced the above in over a year or
more! I am not out of the woods yet as I wrote under the recent IBS post. I have inflammation of the bowels which has
been my second scourge. I won't go into detail because I did on
the other post. My other issues are head sores, which are finally getting better! My shoulders ache at night, my right hand aches at night, and my left eye is so dry at night. I keep a
wet tea bag by my nightstand for my eye, it sure helps. My hair is very brittle and all over the place! I have a difficult time remembering things sometimes. I have trouble sleeping, but it is way better than it was. The amazing thing is my energy level is good! Pain during sex sometimes, but that is improving too.
May we all continue to heal and heal. Love to you!
Mrs. A, How wonderful to hear
Mrs. A, How wonderful to hear from you! I have missed your delicious recipe suggestions. Congratulations on your progress! It warms my heart ;)
Katie
Oh thank you, Katie! I just
Oh thank you, Katie! I just shared a few recipes in my last few posts. I just love to cook. :)
Katie,
Katie,
I never really flared during treatment, this is somthing that happened to me before treatment, when I would be on the couch with a heating pad on my lap and peeing every 15 min, to me that was flaring. Once stable, I luckily stayed stable. My bladder would go from feeling not really there to feeling annoyed but it was never unbearbable again. Since then it has just gotten better, with ups and downs but always in the right direction.
Hi Katie,
I myself have wondered about everyone else’s symptoms. I’ve been in treatment for almost 15 months and my symptoms have changed dramatically. When I first started I had urethral and bladder burn on/off all day especially after voiding. It felt as though I lit a torch in my lower abdominal and pelvic area. I had horrible sinus pain and energy level was a big zero! Always wanting to sleep. I would also get a horrible skin rash on by abdominal area. My period cycle was every 16 days. Lets not forget depression and basically crying for most of the day. Today, I’m no longer experiencing daily bladder and urethral burn. Bladder has been so calm and almost non-existent. It will feel a little sensitive during ovulation. My sinus pains have improved and so has my energy level. I’m able to stay up later and not having the need to sleep during the day. The rash still comes and goes but less frequently and my period cycle is now between 23 to 26 days. Emotionally, I’m doing much better but still some work to be done. What I’ve been dealing with for the past 3 months is constant stomach burn. This is new to me and I never had stomach issues in the past. Not sure if it’s die-off but I’m hoping this is the end of my symptoms! This treatment has been difficult and very slow but if I look back at where I started, I’m in a much better place thanks to Dr. B.
Hi Katie- good questiona nd I
Hi Katie- good questiona nd I have often wondered the same thing. From the very start , I have been up and down back and forward and all around as far as symptoms go.
It has taken me a long time to even be able to characterize my stuff. At first I thought I didn't have pain until I realized it was painthat causing me to rock and cry and pace the floor! I know that sounds crazy but I have realized that I was used to charqacterizing pain as injury -type pain - IC is more like labor pain - not exactly but in its quality. I call it a swirling pain and that is what I mean when I say "flare" These happen most to me at night right before bed.
Other days I get:
nasty hyperstimulation of the clitoris- it is there all the time but only really awful sometimes, burning, soreness, fullness, distended belly, itching, frequency, cramping, PMS with irritability and rage (fun!) All along since about a month into treatment my neck is sore and stiff
All of these are rotating and vry in levels of intensity so a good day for me just means it is there but low level. I have many good days. I also have many bad and medium days! LOL
That might cover it all!