Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
So I went to my ob/gyn yesterday to ask if my hormones might being causing extra problems with my bladder. He acted like I was crazy and said sense I was on the pill, very low dose, that I could not be having symptoms. Even though I'm 50. I thought maybe my estrogen might be on the low side but I didn't even get a chance to ask. He sent off a urine culture and took a vaginal culture, he just stuck the stick up there with no lubricate, it hurt so bad and continued to hurt all night last night. Had to sleep curled up with the heating pad. I have gone to this doctor for twenty years and have never felt so mistreated and ignored. Sorry to be so graphic, I think I'm still hurting from that.
I don't say this as though it's an easy thing to accomplish, but it is possible. My "bright side" to IC and endometriosis is that it has forced me to focus on my health and well being, to put myself first (something that is very new and scary to me.) I've had 2 gastroenterologists (when my symptoms first began getting severe, my family thought it was psychological and the GIs thought it was IBS/spastic colon) 4 ob/gyns (not counting the amazing one I'm currently working with now) 2 pain management specialists (including the wonderful one I'm working with now) 1 surgeon, 1 physical therapist and 2 urogynecologists.
And even after all that, I learned that I have the right to say "no" to a doctor if something just doesn't feel right, to get second, third or fourth opinions if I feel it necessary and to do all that I can to help myself heal. It can seem like a REALLY REALLY REALLY daunting task, but fighting for ourselves is what makes us the Warrior Goddesses that we are, and lucky for all of us, we have the community here on DS to seek support when we need it and to share our victories no matter how small. Knowing that I can and ought to be my own best advocate has helped me not only regain confidence in my various medical care takers, but in myself as well (it's always nice to have several doctors confirm that I'm not an overly stressed, overreacting whack-a-doodle, no matter that it took 2 whole years to pin point and begin correcting my illnesses-I'm getting there one baby step at a time.)
Be strong, be well, and feel free to be in touch. ***HUGS***
Jordan
PS- myself and a few others have had entire topics dedicated to bowel movements. I don't think there is such a thing as "too much information" when we're all trying to help each other on this really crummy circus ride. Maybe it's just me, but as soon as I joined DS and found other women going through very similar crummy situations and their candor about our diseases, all of my inhibitions fell away. You have my best wishes to preserver!!!!
You have a good point about the TMI, I am never offended by someone giving details about things it can also be good information.
Take care and stay in touch,
Becky