Pudendal neuralgia / PNE / post op / high stress

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

 

@Frogfishes
You are absolutely right that your nervous system is on high alert again. But you dealt with this before, you can do it again.
It’s also ok to have “structural” issues and TMS. Being worried about that is a form of self-judgement and criticizing. However you already know that working on your psychological state does help your symptoms, and gives you courage and strength, so why not start there. You must just start some place and do it with kindness and compassion for yourself. Remind yourself of the great challenges and that you have done the best you could in the circumstances.
I think you can try to start with the TMS therapist but I think you could also benefit from psychotherapy. Someone to guide you on the psychological work and support you.
Are you still in France?
My friend in Paris has had TMS and structural issues, and major health concerns. He resolved his pain and mental suffering with an EMDR therapist. It was the best option for him in Paris, and now he has a wonderful, full life.
EMDR is a mind/body psychotherapy.
Internal Family Systems (ISF) is also very good. Phil de la Hay in the UK is a TMS therapist and also specializes in ISF - so he can provide you with both.

 

Thank you ,no I went to the UK to France just for the surgery in 2015, recovery was difficult, but I had no other options, gradually I improved over two years and ironically I left all forums, stopped trying to figure out, learnt energy healing. Sitting post op has often been tricky but I had resumed social sitting / normal sitting with a hint of caution.

My mind gremlin is "nerve trapped,need re-op"

I have found UK TMS who uses IFS and plants chat next week.

Thank you

 

Welcome to the Forum! You have found a group of people that can relate to your story. Most of us have traveled a similar path.

I'm so glad you've found a TMS therapist to work with. It is possible to navigate recovery of TMS using a self-help approach, but when someone has as many issues and is enduring as much stress as you are, it can be very helpful to have a professional as a guide.

Let us know how you're doing and feel free to ask questions any time. We're all here to support one another.

 

Thank you , I overdid the books and videos last time an

 

E

Excellent! You are doing all you can for yourself right now.