I have not posted in a while. I had pelvic vein embolization on 11/30/18.
the next day I started having tingles down my leg, pain, pain in my buttocks and burning pain in my crotch area. For 5 weeks the surgeon kept telling me it was normal, and likely due to the compression shorts I had to wear 24/7 for 30 days. My pain was constant and approximately a level 7. Finally after 5 weeks I was able to get the surgeon to see me again, when I mentioned I thought I had a problem with my pudendal nerve ( which I discovered via internet). The surgeon then agreed that I probably should have come out of the compression shorts sooner, but nerves recover. He was no help. I have also seen a neurologist who thought based on the examination, the notes from my surgery and my feedback, that I had sciatic and pudendal neuralgia. Because my pain intensity decreased from a 7 to a 4-5 after I stopped wearing the compression shorts, he said he felt the nerves might heal, but it will take 9-12 months. In the meantime he suggested physical therapy, restorative yoga, and active release therapy. He said I would have been better off on a padded operating table as the procedure was 2.5 hours, and that it take only 20-30 minutes for a nerve to be damaged without blood flow/oxygen. His best guess was that the way I was positioned cut off the circulation to my left leg, causing the problem, which was then exasperated by the compression for 30 days.
So, I am spending lots of money right now, seeing a physical therapist weekly, paying for yoga and seeing the active release therapist as well. I will say that some days/weeks the pain is down to a 2-3. Some days/weeks it is back to a 5. I cant find a reason for the change, as many of you have also expressed. I believe that lack of understanding/control of our pain is the worst part of the journey. I would encourage others out there to also try the active release. There are probably other parts of the body that are tight/out of whack because of the compensation we must do to try and sit without tremendous pain and discomfort. The neurologist felt confident that my gait was probably different, which can then lead to knee or back issues.
I dont have the answers. Sometimes looking on this site makes me more depressed – sometimes I find it helpful. I have also turned to daily meditation (something I never did) and I am even seeing a Healing Touch practitioner I found through a local hospital. Both of those have helped. I am a person who tends to "carry on" no matter what, and both of these practices have brought tears from me that I didnt know I was holding in. I am sure many of us are in that same situation. I would recommend that anyone try both of these as well. I figured that any type of assistance was something to try and be hopeful about.
I hope all reading this find some relief today!