Frogfishes
New Member
Hi, I am waving and saying hi.
I had a diagnosis of pudendal neuralgia/ entrapment 12 years ago after a physio used some repetitive movements on SI joint and pubic area I ended up in a and e with suspected cauda equina and came home in a nappy.
I had surgery in France in 2015. My bad side came out good, my good side came out worse from op. Took me two years to get life back on track with walking and managing pain.
I have been pain free for about 5 years had stopped using cushion, "being careful" .
I helped life a kayak onto a car and felt twinge in pelvis, where I had some hypersensitivity last time.
I rested , forgot about it , it settled.
A week later I was woken in the night by sizzles in butt cheeks and si joint and electric shock like sensations, over the course of three days my PN symptoms are back . I can press where the nerve exits alcocks canal into pubic area and it's tender, I have wide spread symptoms in butt, SI , perineum and spasms. All like last time.
If I sit for long / put si joiNt against chair back I get pain in bladder and crawling ant sensations in genitals.
It's often worse after I have sat - so whilst I can sit telling my body it's safe , it comes on after and gets to 8/10 pain.
I lost my life last time, nearly lost myself. I had all the interventions to manage pain and they did very little .
I had just come back from a holiday where I felt so grateful for having a strong body , my freedom to go where I wanted - I had driven without my cushion for 3-4 hours , and overcome my motorway anxiety.
Home life the last three years has been extremely stressful, my teen developed anorexia, diagnosed ASD and three episodes of suicidality.
My body has felt that it could not take anymore, I have been my daughter's carer for three years and most of the responsibility has fallen on me. I have fought for her care, her appts , her meds. Recently being asked to " just call the assessment team" or " just send them an email" has felt like it's too much.
My D blames us and me in particular for her mental health issues, due to my pain when she was young I was often not "present". Anorexia treatment is brutal, especially if no one knows you are autistic. She has disconnected from us, she lives with us, but does not engage as " normal family dynamics". I feel deep grief and do release tears easily.
Over recent weeks I noticed that my body was very stressed, I was hyper responsive to any undertone in voices, sounds, and was using alcohol to feel the difference between a more relaxed body and my "normal' . I had increased my self care, was taking time out.
My son was out till 4am one night, he was expected home at 11pm, I felt the panic in my body that something had happened to him, and felt it in my hips , this feeling has coming on over the past month or so, fear of losing someone. I have also felt a lot of irritation and frustration, feeling trapped by my home situation.
I know I have TMS, but my mind keeps looping back to I need surgery again, I should not have lifted the kayak , I should have used my cushion for the long drive, I should not have swum in the river so far , and yes I am in a state of terror.
Last time I developed severe fasciculation disorder after a and e and that too is back ! I know what that is and it's unpleasant.
I tried Sarno before , watched all the you tubes , read and read the books, journaled out my pain but I was too diligent and attached to the outcome. I did not get any breaks in my symptoms, and they were worse after I had sat, so I concluded I had a real structural entrapment.
Here I am again , trying to navigate " real structural" Vs TMS , repeat surgery is not really an option, I feel I have something caught in the ligaments and they no longer operate there. They have also made people much worse.
I have contacted a UK practitioner in TMS.
I am re reading , watching Dan Buglio and wishing I felt "normal"
Sarah
I had a diagnosis of pudendal neuralgia/ entrapment 12 years ago after a physio used some repetitive movements on SI joint and pubic area I ended up in a and e with suspected cauda equina and came home in a nappy.
I had surgery in France in 2015. My bad side came out good, my good side came out worse from op. Took me two years to get life back on track with walking and managing pain.
I have been pain free for about 5 years had stopped using cushion, "being careful" .
I helped life a kayak onto a car and felt twinge in pelvis, where I had some hypersensitivity last time.
I rested , forgot about it , it settled.
A week later I was woken in the night by sizzles in butt cheeks and si joint and electric shock like sensations, over the course of three days my PN symptoms are back . I can press where the nerve exits alcocks canal into pubic area and it's tender, I have wide spread symptoms in butt, SI , perineum and spasms. All like last time.
If I sit for long / put si joiNt against chair back I get pain in bladder and crawling ant sensations in genitals.
It's often worse after I have sat - so whilst I can sit telling my body it's safe , it comes on after and gets to 8/10 pain.
I lost my life last time, nearly lost myself. I had all the interventions to manage pain and they did very little .
I had just come back from a holiday where I felt so grateful for having a strong body , my freedom to go where I wanted - I had driven without my cushion for 3-4 hours , and overcome my motorway anxiety.
Home life the last three years has been extremely stressful, my teen developed anorexia, diagnosed ASD and three episodes of suicidality.
My body has felt that it could not take anymore, I have been my daughter's carer for three years and most of the responsibility has fallen on me. I have fought for her care, her appts , her meds. Recently being asked to " just call the assessment team" or " just send them an email" has felt like it's too much.
My D blames us and me in particular for her mental health issues, due to my pain when she was young I was often not "present". Anorexia treatment is brutal, especially if no one knows you are autistic. She has disconnected from us, she lives with us, but does not engage as " normal family dynamics". I feel deep grief and do release tears easily.
Over recent weeks I noticed that my body was very stressed, I was hyper responsive to any undertone in voices, sounds, and was using alcohol to feel the difference between a more relaxed body and my "normal' . I had increased my self care, was taking time out.
My son was out till 4am one night, he was expected home at 11pm, I felt the panic in my body that something had happened to him, and felt it in my hips , this feeling has coming on over the past month or so, fear of losing someone. I have also felt a lot of irritation and frustration, feeling trapped by my home situation.
I know I have TMS, but my mind keeps looping back to I need surgery again, I should not have lifted the kayak , I should have used my cushion for the long drive, I should not have swum in the river so far , and yes I am in a state of terror.
Last time I developed severe fasciculation disorder after a and e and that too is back ! I know what that is and it's unpleasant.
I tried Sarno before , watched all the you tubes , read and read the books, journaled out my pain but I was too diligent and attached to the outcome. I did not get any breaks in my symptoms, and they were worse after I had sat, so I concluded I had a real structural entrapment.
Here I am again , trying to navigate " real structural" Vs TMS , repeat surgery is not really an option, I feel I have something caught in the ligaments and they no longer operate there. They have also made people much worse.
I have contacted a UK practitioner in TMS.
I am re reading , watching Dan Buglio and wishing I felt "normal"
Sarah
