Health Organization for Pudendal Education

Hello everybody, My name is Joe and I have Levator Spasms or ( PNE). I am not new to the forum, just been away for awhile. Haven't given up just give out after 22 years. I have tried everything but surgery and Most people who had surgery ended up worse off. One lady I know who had PNE surgery ended up losing control of her bowels and bladder. I do have control of my bowels and bladder. I call this problem, "the golf ball syndrome". It feels like a golf ball has been stuck up your rear.

Hi Joe,
Sorry you have not found a treatment to rid you of the golf ball, etc. Not sure what to say so I will just give you my story since there is some similarity. I started with 2 levator ani syndrome attacks in 2007 and 2008. The colon rectal surgeon sent me to his colleague that did electro galvanic stimulation (EGS) treatments that cleared it up. Then in 2010 I sat on a hard chair was in pain and did not get up. That set off another attack but EGS did not work nor did botox. So he sent me to my pain guy that is a physiatrist who sent me to a PN aware PT. She worked in but then realiazed she was not helping because my ligaments were really tight and I may have PNE so she sent me to Dr. Marvel. He evaluated me and I had nerve blocks along with history (chronic constipation and excessive sitting) determined I was a candidate for PNE surgery. I had no bladder or bowel leakage and did not feel the golf ball. I had the surgery because I also felt I was getting worse, would lose my job and end up in pain level 10 for 24/7. The surgery helped me to keep my job and finish my career to collect my pension. I still do not have leakage issues but had to work on my pelvic alignment and can have flare ups especially after falling or overdoing. The past few weeks were overkill so I am seeing acupunture more often and back to PT. I will recover. Stress along with some physical work (packing china so it would not break when we had the house painted and they moved furniture was too much)! Acupuncture was very helpful in clearing scar tissue after surgery around the incision and got rid of my last constant PNE pain so I could get off lyrica and other drugs during the day. I still take stuff at night because it helps me for the next day and getting through my current partial work days(5hour). I hope you can find some help.
Janet

I will just give you one piece of advice.

DO read up thoroughly on your options.

DO NOT rely on others experiences and assume you will be the same and change your treatment based on that. Surgery has worked for many many people. Maybe not cure them but made them better. It CAN help.

Reading too much can be detrimental to your recovery. I was terrified of nerve blocks and had heard of multiple people getting worse after. I spent months panicking and cancelling my appointments.

I was reassured by my doctor that would not happen. And of course, he was right, had the injection and got no worse than i was before.

So my point is to just be careful, do what is right for you.

I hope you get better.