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08-06-2009, 06:44 AM
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#1
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ICN Member
Join Date: Aug 2009
Posts: 14
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Kenalog Injection for Pain?
Hi everyone -
So this is my first post. I was diagnosed with IC in May of 2009 following cysto. with hydro. I have gone for DMSO therapy and am taking a low dosage of Elavil and am also using the IC diet and learning what works for me. My bladder pain is under control for the most part. The worst symptom for me has been the pain/hypersensitivity in the clitoris. In fact, this is what sent me to the doctors back in January. I was tested for everything under the sun until I finally found a urologist who was willing to perform the cystoscopy.
I found this forum yesterday and have been reading and reading!!! (I have had two sessions of pelvic floor therapy so far and am scheduled for more.) Anyway, after reading about the pudendal nerve I called my urogyn. this morning. He wants me to continue with the pelvic floor therapy, but said if it does not help that I should have a Kenalog injection. Has anyone tried these? If so, what was your experience? I did some research online and am not thrilled with the possible side effects. They said they have not seen much luck with Lyrica or Cymbalta.
I have tried acupuncture but am just too needle to withstand the treatments. I am also following all the advice about vulvodynia (lower oxalates, white underwear, etc.) These have helped the other regions in the vulva that were bothering me, but not with my main complaint.
I am so glad to have found this forum! I wish no one else were suffering with this but I know I'm not alone and there is hope. -Karen
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08-13-2009, 07:57 AM
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#2
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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I would suggest finding a PNE Specialist before continuing with PT. PT's don't all know about the Pudendal Nerve and sometimes they can be doing the wrong therapy and make things worse. Communication with these doctors is so important.
Lyrica and Cymbalta have helped a lot of people, including me so don't rule them out yet until you've tried them.
Keep reading. Information is Power and Knowledge is Power.
If you need anything else, don't hesitate to ask or PM me.
Kara
P.S. I am not sure about that Injection. A PNE Specialist would know though.
__________________
TO VIEW MY CURRENT AND ONGOING VIDEO DIARY OF MY PUDENDAL NERVE DECOMPERSSION OPERATION AND RECOVERY, YOU CAN VISIT My Facebook Page:
http://www.facebook.com/profile.php?id=1158566812
You can also view my CURRENT PHOTO ALBUMS and some other secrets about me. Once you sign up, I'll add you as a friend if you mention you are from the ICN. It's FREE
Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)
Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b] http://www.pudendalhelp.com/home.html
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
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