hi all, hope you are all having as good a day as you can have under the circumstances of living with pelvic pain.

i just wanted to update you as to what is happening to me after my disastrous appointment with my now ex pain dr last friday.

i am not one to let the grass grow under my feet, so i contacted professor robert in nantes, who, most of you will know offered me pudendal decompression surgery last september, i was supposed to have it jan this year but i had to cancel due to lack of funds, well anyway, i have contacted him again and i just awaiting a date to proceed with the surgery.

because the nhs wont fund it , i have sold my jewellery, and am also selling everything i can find to fund it (dont worry i still have my bed and a tele).

as you know i was on the radio a few weeks ago about pne and i will be contacting them again about my surgery and hopefully they will follow my journey from now on and again it will highlight our struggle with this hideous condition.

i will keep you all updated with any info i get and also i think it will help many of you who are considering going to nantes for a diagnosis or surgery



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  • Good for you! Will be interesting and enlightening to follow your story. Good luck. Xx

  • Best wishes Andrea in your continued journey. Please let us know how you are doing along your way. Blessings!

  • Hi,

    Glad too hear you will be receiving your surgery I hope it's all successful for you. I'm currently struggling but not anywhere as much as you are. I had a catheter fitted on Tuesday as my bladder is distended I was holding 2l. They believe it's my condition and the nerves not communicating to tell me it's full. We will see how it goes, review due in 3 weeks fingers crossed. Wishing you all the best truly and keep me updated.


  • thanks to all of you, i will of course keep you updated along the way, it may help others out there


  • Hi Andrea, of its not super personal, can you let us know approximately how much is a PNE SURGERY for? Just a ballpark. I understand every case is going to be different. I'm now starting to think on the lines of going to France.

    Really glad to hear about your appointment. All the very best to you. Lots of prayers.



  • hi of course thats not a problem, its approx 5300 euros, that covers everything apart from , a private room and the extras you may have like wifi, tele etc


  • Andrea,

    Thank you for your reply. How long are you expected to start in France before you're permitted by the doctor to go back to the States? Do they have someone in the States who you can't see for follow ups post surgery?


  • Hi Andrea,

    Sorry if I'm being a bother but am hoping you can guide me on how to go about connecting with Dr. Robert in France. I have a few general questions about the process. Will you be willing to connect over email or text message which ever is more convenient to you.

    Thank you soooooo much for all your support.



  • it is fine to do it over private messaging, and of course i will help where i can so just ask away


  • anxious for you to have a great recovery and complete healing

  • its looking like some time in may i will be having the surgery, but i will keep you updated


  • What are your syntoms? Have you positive response on guided injections?

    I have CPPS from 13 years. Recently Dr. DeBisshop (Aubagne - France -) suggested me surgery but I have not clear indications based on Nantes Chriteria. Oher specialists doesn't recommend it..

  • yes i have had a postive pudendal nerve block on both sides this was done in nantes, they just confirmed my diagnosis as i was 1st diagnosed in bristol in 2012


  • Hi , was wondering how you were healing?

  • thanks for asking, not doing too good at the moment, but its still early days at 9 weeks post op

  • Chillijava, What is going on when you say not doing very well? Are you having "buyers remorse"??? Regret often precedes "so glad I did it"! Before my (unrelated)chronic pain, I underwent ACL reconstruction in 1996. Spent a couple days in hospital and underwent very slow (I thought)and painful recovery despite my acute injury. I realize now that after each acute injury/ surgery, It was stressful due to the change in life style and the mystery of what is the new "normal"! It turns out that I was one of my surgeons most favorable patients because I did not "cheat" by doing activities that were not supposed to be done. It is very stressful to follow those guidelines especially when we are feeling better. I hope I have restored your faith in your decision. No one said it would be easy.­čĄóDont lose your spunk.

  • no, i was doing quite well, until my gp last week, told me i had to do kegels for a longstanding incontinence issue, he would not refer me until i had done the exercises for 6 weeks, i knew i shouldnt have done them and stupidly i did for a few days and then boy did my pne pain flare, so i stopped doing them.

    too late though as they have caused a big flare of my symptoms, i will now have to wait until the angry nerves have settled, i am now worried that all the surgery work has been compromised, my husband keeps saying no to worry and that its just a minor setback and that it will settle

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