YEAH!!! support group and not so great update

[NTHottie14]

I found out from my doctor that a nurse at Strong Memorial Hospital in Rochester,NY is starting a support group!! Im sooo excited.....I will let everyone know when and where if your in the area.

UPDATE FROM BLEEDING AFTER INSTILL:......My mom contacted Dr. Moldwin in NYC. He said he has NO idea why i was bleeding so bad for 18hrs. afterwards and doesnt even know why i was bleeding so it kinda freaked me out, well it still is. He wants me to see a urogyno in Rochester. He also said that hes going to give me a pill type thing i insert into my uretha to stop the constant burning and it dissolves...has anyone tried this? does it hurt? does is work? Im willing to try anything. Its similar to the pill type thing you put in your rectum except its into the uretha and it disolves. I cant remember what its called... but if you do please tell me..id really like to know. Dr. Moldwin said he puts the whole pill thing together and makes it up and stuff. I know this sounds confusing but i just cant remember the name which is making it hard for me to explain lol.. Thanks for the help!! Hope everyone has a wonderful easter and vacation. Im visiting my grandma in Philly with my mom and my dog..Bugle the Beagle! My dogs a beagle Named Bugle Theodore Ellis lol...We were all going to go to florida but had to cancell bcuz we dont have that kind of money to spend anymore. Sometimes i think its all my fault even though i know its not. They want me to talk to a therapist or phycitrist (dont know how to spell that) but i just dont want to. They dont know what it feels like so why try to explain? it doesnt get ya anywhere. Thats why i think its great to have a support group its like talking to a therapist but they know what your feeling. Im meeting with Anniepie1976 Tuesday. Shes in my area and shes coming up to talk since theres not support group around here. I cant wait!! My mom said she even needs to talk with someone else with IC. Well b4 i turn this into a novel i better get going lol. Thanks a whole bunch!!! Happy Easter to you all!!!
Laura

[ICNDonna]

When I was first diagnosed, I tried some urethral suppositories for a while; I don't recall what the medication was. They aren't difficult to use and I'm sure Dr. Moldwin will give you some help.

And it does help to talk with a counselor. They may not know what IC feels like, but they do know how to help us deal with having a chronic, incurable at this time, disease. I encourage you to give it a try.

Warm hugs,
Donna

[K9wife]

The nurse that is starting your group has contacted me several times- both by phone and by email- re: starting your group. She sounds very knowledgable, motivated, and enthusiastic!!! I'm sure it will be very helpful for you in your IC journey!!!

[MelindaP]

HI Laura!

I am a patient of Dr. Moldwin's as well. I did try his urethral suppositories for 4 weeks, 3x a week. I think they did help maybe a little. My main symptom is constant irritation in my urethra/bladder neck. I do not have uregency/frequency. They were not hard to use. I had the local uro's nurse show me how to insert them & I did them on my own. I always took 1 macrobid after each insertion to ward off a possible UTI. It burns at first, but then it numbs it a little. I stopped after the 4 weeks because I did not see a huge improvement, but he said it it has worked wonders for other patients. I think my IC is really influenced by hormones. I am nursing my daughter right now, but plan on getting back on BCP after I wean her. My IC has been bettter these past few days (knock on wood). I find it help to drink lots of water to keep urine dioluted & use Urelle.
Feel free to PM me if you want.
Melinda :)