I am honored to be the first person posting in this section and am excited about this new site to help those of us with chronic pelvic pain and pudendal neuralgia and entrapment.
I have been around the block, so to speak, and had to find out much of the information through extensive research, web searches, talking to other patients, and traveling to doctors and specialists. This is after 15 years of suffering pelvic pain, 10 of those in which interstitial cystitis was the diagnosis, and exploration of pudendal neuropathy in the last 5 years, with a diagnosis of pudendal nerve entrapment after several years of conservative treatments (non-invasive, such as physical therapy, "paradoxical relaxation," botox injections in my pelvic muscles, pudendal nerve blocks, and finally - pudendal nerve entrapment surgery.
My surgery was last month, so as you can imagine, I am in the first weeks of healing, which can be a very difficult time. It is hard to know if you are doing well or not -- those with experience tell you to wait at least 4 months before deciding whether your surgery was a success or not. I am taking it day by day. I can take short walks, which is advised, but everything else is restricted to bed rest or in a special recliner that allows me to keep my leg extended. That is where I spend my evenings so I can watch programs or movies with my husband.
So - I am in a situation where I am looking for support and caring from other members who have experience with PNE surgery, but also I am here to provide information to those who are exploring surgery as an option. I know how important it is to make sure you have tried other options before the surgery, and how important it is that you know the risks and outcomes of PNE surgery before undertaking it. I was told that the success rate is roughly divided into thirds (of course it depends on which surgeon you go to, and which approach is used, and your own particular case): 1/3 of us get better (back to our former selves and lives); 1/3 of us have improvement (we are better but not completely without pain or restrictions); and 1/3 of us stay the same. I was advised that less that 1 percent get worse.
For me, these risks were worth it. I had come to the end of my rope. I was bedridden, could not walk or even stand without pain - the problem was my left side, so my left leg was losing function as well as experiencing terrible pain. It felt like a knife, or sometimes a sword, was piercing through me in my vulva area to the left of my urethra and vagina. For so many years I was told that was the result of "referred pain" from my IC bladder. Later I realized that it was the perineal branch of my left pudendal nerve. Just having a REAL diagnosis was such a relief!!! I knew in my soul that PNE was the correct diagnosis.
I will try to keep you updated on my progress as I go through the healing process and look forward to hearing your surgery stories, as well as finding friends to recover together with.
Happy healing and all my best wishes t those seeking help with pudendal pain,
Sharon
I haven't had surgery but don't think I'm going to be far behind you. I'm one of those who's had the 3T MRI, which seems to have picked up some pretty significant scarring, entrapping the PN. Scar tissue entrapping the PN seems to be a common denominator lately.
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