Support groups for Pudendal Neuralgia and Chronic Pelvic Pain

[Tamara1]

Does anyone know of any support groups for Pudendal Neuralgia or Chronic Pelvic Pain in hertfordshire or London that I can join, I would appreciate any information regarding this. thank you.

[jacquieb Volunteer]

Whereabouts do you live in Hertfordshire? I live near Potters Bar, St Albans way.

[Tamara1]

Hello jacquie, thank you so much for your response, i live in Welwyn Garden City, very close to you..

[jacquieb Volunteer in reply to Tamara1]

Hi Tamara, you are welcome to call me if that helps up or maybe we could meet up, you are only 10 minutes away from me. I am sure I could help you with advice.

[Tamara1 in reply to jacquieb]

Hi jacquieb, it would be great if we could meet up and have a talk, I think it would really help me.

[jacquieb Volunteer in reply to Tamara1]

Hi Tamara, do you work during the week? We could meet in London Colney or John Lewis in WGC, what do you think?

[Tamara1 in reply to jacquieb]

Hi Jacquieb.I am not working at the moment,I could meet you in either locations, whichever you prefer.

[jacquieb Volunteer in reply to Tamara1]

I'll contact you Monday, next week is the best for me.

[Tamara1 in reply to jacquieb]

Ok next week is fine for me too, many thanks

[jacquieb Volunteer in reply to Tamara1]

Hi Tamara, could you make the Thursday 28th around 12.30-1ish. Could meet you in the Howard Centre, say lower level M&S. We could go for a coffee or snack somewhere?

[Tamara1 in reply to jacquieb]

Hi Jacquie Thursday 28th is fine for me, i will meet you ground floor of M & S at 12.30, looking forward to meeting you.

[jacquieb Volunteer in reply to Tamara1]

See you then jx

[JudyRentz]

This is very much an unknown DISEASE,not syndrome.You may have to create this yourself! Have you found help? you do not have to live with this! Soula@ pudendalnerve@aol She was the first to answer my blog.Thank God, Dr.Stanley Antolak answered and I am set for surgery in Dec. Not everyone needs surgery,But,pudendal injections ,WHILE asleep!saved my life! Judy r

[Tamara1]

Hi Judy,I have already had 2 pudendal nerve blocks and 2 ct guided nerve blocks, which all gave me very short term relief. Where are you going for decompression surgery? Thank You for your reply.

[JudyRentz in reply to Tamara1]

To Minneapolis,MN to Dr Antolak.Its not 100percent,but, it's all that's left. I have a stim implant,but it won't fhase the anal,but,did take away the pains of delivering a baby!

[paulyne]

I live in West Wickham, Kent (Greater London) and would love to meet up with other members who are suffering from PN to meet up and discuss treatments and things we've found helpful. I can easily get to London if you or other members would be able to do that.

P x

[Marion35]

Hi everyone

I am in Hereford but if meeting up and discussing how Pudendal Neuralgia can get more widely known especially in the Medical Profession I am up for it.

[JudyRentz in reply to Marion35]

Marion,thank you! After finding a website in US,I have tried to put this monster OUTTHERE on anything I could write on.We searched,along with two specialist,to find anything with the symptoms.took three years!all not by chance!but by God. That's why I answer all of these letters from fellow sufferers! Ifound it impossible to find anyone who knew the word! Go on line to a site accepting blogs,I searched Levator or Pudental.Post to any and everyone out there.Its staggering how many there are of us.My ortho thought only125 in the US.. My mission also is to yell it out.weneed to get the med field to realize this monster. I had a top university surgeon to tell me ,see aPSCHYIATRIST!! Praise GOD I found help! Also,I am set to have suogery in Minnesota on Dec11. All out there please pray it will help! Judy r

[Tamara1 in reply to JudyRentz]

Hi JudyRentz, I am wishing you all the best for your surgery, God is watching over you , best wishes tamara1,

[JudyRentz in reply to Tamara1]

Thank you! Today was a horrible day! Surgery can't come soon enough,even though I know the odds! Thanks to all who pray.HE is the only way. I'm still here!

[Marion35]

Hi Judy

Lovely to hear from you, yes this is a bugger of a condition to cure and to get acknowledged. I pray that your surgery on 11th December is a success. Please keep in touch to let us know how you progress. Healing thoughts winging their way to you xx

[JudyRentz in reply to Marion35]

Thank you so much! It is so good to have others to talk to!

[2977reader]

Hi Tamara, know your post about looking for people near you with pudendal neuralgia was six years ago but just wondering if there is a support group in Hertfordshire. I am a 51 year old female, who has been in pain for six weeks now. Thanks so much