Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Some pain management therapies may help you Jeanne,
Allodynia can be associated with a change in the central nervous systems(CNS) response to pain. The CNS needs to be reset (or re-reset ) allowing a normal response to touch etc. Have you ever had any pain management at all? you might find it beneficial.
I am just about to have the same (although I don't have allodynia) for coping strategies, although I have waited around a month now for any correspondence for an appointment. Think I might get in contact tomorrow if nothing in the post.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Jeanne, you talked about pain when angry. My guess is you experience more pain when angry because muscles become tensed. The muscles cause tension around the nerves, this causes even more pain. People can hold tension all over their body in stressful/angry situations (including pelvic tension.) I certainly feel more body tension with upsetting situations. I also have a hard time relaxing, I am a busy body by nature (well was more so until PN.) My own inability to relax has certainly caused more harm than good I am afraid.
Thank you for your notes. I have tried four kinds of meds but they didn't change the pain unfortunately. I am going to ask my doctor if I could try muscle relaxants to see if that makes any kind of change for me. Body tightness is an issue which it sounds like you have too Meliora. For me, I tend to dwell on issues or people who have let me down and then I feel the tension in my body. I've read about a woman who has fibromyalgia and she said she had to learn how to be happy because otherwise, she was beating up her body too much.
Something like meditation, relaxation and other cognitive pain therapies would be beneficial I'm sure.
Just learning a good breathing technique will help probably too. I try to practice umbrella breathing; breathing in, as if trying to put an umbrella up with that breath followed by a slow breath out. I find that just a few breaths like this tend to calm things enough to put thought processes on a more even keel. The good thing about cognitive therapies is they can not do any harm
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Helen and Jeanne, I think earth drumming music might be helpful, now that I think about it. My youngest is in occupational therapy and they used to play this type of music to calm the sensory system. It promoted sleep too! I think I will start putting some on for myself.
Yes, Jeanne..I do tend to hold lots of tension in my body. I saw one pelvic specialist who said she has never had even one type "b" personality have a pelvic disorder. Hmmmm....I don't quite believe that, but I am sure there are plenty of type "a" personalities with PN. Relaxation is not one of my better traits...I always stayed so busy. Learn how to be happy, I understand that actually. This past year/spilling into this one has been so horrible, I need to do that. I know misery/pain/etc. cannot be helpful to ones well being.
I'm in the middle of reading this great book called Healing Painful Sex by Dr. Deborah Coady and Nancy Fish. It's very informative, but quite depressing at the same time as I realize that I have more symptoms to PN than I thought. She talks about all causes of sexual pain, not just PN and included in her book she talks about clitordynia. I'm sure others have hear/read the book. I think it's a great read and very informative.
Good luck,
Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
Thank you, Shana. I have that book and need to look at it again. It is one of my two favorites. The other one I like is Healing Pelvic Pain by Amy Stein. There are a lot of PT exercises in it. I don't know if that would be ok with your labral tears though.
) allowing a normal response to touch etc. Have you ever had any pain management at all? you might find it beneficial.