Hi there
This is my first time on this post. I have IC/Painful bladder syndrom with hunners ulcers. In pain for 8 years, found ulcers in 2011 had them fulgarated the found again in April 2014 so fulgarated again. Tried all meds, approx 25 diff ones, had Interstim implanted October 2014, it's not working. I also suffer w severe vaginal pain, burning, shooting pain, can't sit, drive. Get perineal nerve blocks which help for about 4 mos. I live in northern California if anyone has ulcers and has found relief pls let me know. The doctors seem to have run out of ideas and seemingly patience too. Now divorced, living w parents with my eight year old son. Help! Any advice would be welcomed. Cheers!
Diane
have you discussed using botox or vaginal valium suppositories with your dr.? It sounds a lot like pelvic floor dysfunction...I have that, IC, endometriosis, pelvic organ prolapses and rectal intussusception all held up with mesh...had all the pain issues before mesh implants and actually things are getting better now...I do the vaginal valium, yoga and internal release (I do it at home on my own, but if you don't know how finding a well trained in pelvic pain physical therapist could be very helpful) may work...may not...but certainly won't hurt to try...good luck...I also have the interstim device and after it was put in if I hadn't known better I would have thought they removed my bladder...even though I had lived with it for soooo long I didn't even realize I had that much pain coming from that area...so that might also be worth investigating...if dr.'s give up on you they need to refer you to specialists or you need to find them on your own...I flew out of state to get the best care for my extensive 20+ year struggle wit pelvic pain and though I have bad days...I am much much better then I have been in a VERY long time! Don't give up...keep going!
Hi Ipurr2-
Thanks for your reply. Yes, I have had 3 diff surgeries of 200u botox to pelvic floor muscles and that helped my pelvic floor. Doc mention botox to bladder but through research won't help w my ulcerative bladder pain plus may have to Catherdize which I can't do as my urethra is burning so bad. What is the mg of the Valium? Is it in a suppository? I've done 5mg w no help. What's internal release? Do you use the wand? Earlier I said the nerve blocks helped for 4 mos but I meant 4 weeks as the steroid doesn't last, but it's better than nothing. could you clarify, regarding the interstim, you say you thought they removed your bladder is that because the pain was gone? Or you were in more pain hence bladder removal surgery? Do you still have Interstim or did you remove it? I'm getting new settings on Monday but honestly, if these don't work I'll consider removing it all. I'm so glad you have good days now. After 20+ years you deserve that. It's been 8 for me and it's pure hell. Thankfully my son is turning 9 and getting more self sufficient. Thanks again ipurr2 for your help and hope to hear from you.
Best,
Diane
Hi ipurr2
I was hoping to hear back from you, unless you replied and I don't know how to retrieve. Hopefully you can answer my questions when you can. I'm desperate .
Thank you