Have you ever had any one with this Condition that PT and other things couldn’t help? I’m currently in PT and they specialize in Pelvic Floor. She wants to do vaginal exam because she said it’s definitely internal too. Honey, I’m losing hope., this pain is the worse I’ve ever experienced. I don’t want to do physical therapy if I’ll still be in all of this pain. Help me. Help me. ❤
DaVannis, Amanda here. I had pelvic floor PT and it absolutely helped me be able to sit longer. She also gave me tools to use at home to be able to manage symptoms on my own and to continue therapy once therapy was over. The symptom management has absolutely saved my sanity and suffering many times. It was primarily internal muscles that were affected in my case and that was what causes the majority of my pain. My muscles were so spastic that they would hardly move at first and so therapy was slow going for a while, but it did help. At first, I thought it was making the spasms and pain worse- because the muscles weren't used to being manipulated or moved. She told me that may happen- and it did. She said its like all other physical therapy where it hurts more in the beginning because the body isn't used to the movements and that like starting any new exercise, it can cause pain and soreness- spoiler alert- it did. BUT, it DID get better after about two weeks of therapy three times a week for an hour. Then the magic started to happen where the muscles actually started relaxing instead of tensing up even more after therapy. Then I started noticing a significant difference in my ability to sit. While I still can't sit on hard surfaces, I can sit for about 30-60 minutes at a time. The other thing we figured out through pelvic PT was that my SI joints (sacroiliac) were unstable and moving too much and were arthritic, that was another source of pain for me. That required an SI join fusion after failed PT to stabilize the joint. BUT- I CAN SIT! For me the pain was so bad at times before that even laying down it would hurt like crazy. Now, I have pain in the pelvic and sacral area while laying down on occasion but its not as bad and doesn't last as long. My urinary incontinence also improved, I still leak on occasion, but its usually when I laugh, cough, get up, or do something more strenuous- and its not a lot like it was as far as amount. I still have retention- but I can manage that better now too. I highly encourage everyone with pelvic pain, pain while sitting, and urinary/bowel or sexual dysfunction as a result of CES to consider it and if they do participate in it to hang in there because it will get better- don't forget to do your home exercises as well. I hope this helps! Be sure to visit our Discord channel to join our group discussions on CES to get more perspectives on pelvic PT and other challenges that arise from living with CES. CESLife.org -Amanda Cauda Equina Foundation, Inc.
