newish and getting dramatically worse.

[Lanny C]

Hi Mary Jane

Oh excellent I'd actually really love to go and meet people like me. My appt is fast approaching thank god I am actually really looking forward towards getting some further treatment and help. So I will ask about the meetings. It might be apart of my treatment.

I am trying hot and cold on my clitoris but they are really just after shocks from the bigger flare-ups. but when it is painful it feels like there is a stone in it as it spasms is that a PNE or PN?


Thank you ladies.

Lanny C. xx

[Violet M]

but when it is painful it feels like there is a stone in it as it spasms is that a PNE or PN?

It can be very difficult to determine whether a case of pudendal neuralgia is caused by an entrapment (PNE). The Nantes team published an article listing the criteria they use for determining whether a patient has PNE. You can find the article here. http://www.pudendalhope.info/sites/defa ... iteria.pdf

Violet

[mary jane]

hi Lanny,

the next meeting is on the 25th january at st cyprian's church. when you enter the church, there are some stairs that lead to the basement/cript/whatever you call it...
there is a room on the right ...the meeting resembles AA meetings, very friendly and comforting...we have girls/women with all the intimate pain conditions: vulvodynia, lichen slerosus, pudendal neuralgia, vestibulitis or people like me with a mix of conditions....

here is the link:https://sites.google.com/site/londonvpsg/meetings

hope to see you there !

[Lanny C]

Hi all

Sorry I haven't updated you all about the appointment I had at UCL on December 31st been a little busy with University applications as well as organising my other injections. during the appointment Dr. Curran was happy with the physio I'd previously had but sadly had to abandon because of the pain during and after the sessions. She said I have very bad pelvic floor dysfunction especially in the obturator internus and piriformis and she also blames my cerebral palsy which causes tight, short and weak muscles that are prone to spasaming as my CP is diplegia spastic cerebral palsy. She is worried about how much the Pudendal nerve is being pinched and so am I but I had such a good response from having both my obturator internus injected that she is letting me have yearly injections as long as they provide relief. She also wants me to see her physio so I am waiting for a letter from them. but 2 weeks after my appointment I got a letter for my first set of injections for January 17th! which is amazing I am very impressed (however my 20th birthday is the January 19th). but I am getting steroid and botox injections every month for the next 4 months which is a little hectic as I am cursed with terrible veins after 30 surgeries with multiple cannulation attempts so we are worried about how my last 2 veins will hold up so we are looking to get a PICC line put in if not that then an IV specialist to help me. I am in no way needle phobic but this could be tricky as I was born prematurely so my veins are tiny.

So that is it thus far. I really hope these injections help for as long as they did last time...need some rest from it all.

Hope you had a wonderful Christmas and a happy new year may it bring you less pain and more happiness.

Love,
Lanny C.

[janetm2]

Hi and Happy New year Lanny C.,
Glad to hear you are getting some relief and hope more will come with the next injections. It is great you are able to work in the University and move forward in life. Best to you.
Love, Janet

[Lanny C]

oh my God...Janetm2! Its good to hear from you again, thank you for replying to me again.
I am really relieved she is giving me the injections again as she said she would only do it the once, so I am really relieved. How have you been? How has 2014 been for you?

Best wishes and love,

Lanny C x

[janetm2]

I am doing as best I can. Certainly much better than pre-surgery. I got off my continual meds last year and also had to end PT. I am still going to acupuncture and take tramadol or oxycodone (this is more for my foot pain) at night time to keep the pains down. My hubby is doing connective tissue PT on thighs, stomach and glutes as taught by mt PT and this with realignment keeps the pains down. I am working 6-7.5 hours per day and 2014 has ramped up my tasking so a challenging time. They are lokking to move some smaller older tasks off me. I am also now struggling to get my Family Medical Leave Act paperwork for my feet filled out by a doctor as the new pain guy does not do paperwork and the podiatrist failed me. Next try is the atrhritis doc or my internist. I did get my gynecologist to cover the pelvic pain so the .5 to 2 hour gap is covered it just helps to have the feet as well since the 2 frigid days this month I was off with the foot pain. Better days ahead with 2 mini-vacations planned already. We are having better weather now and I think once I get through this month things may level out. Take Care,
Janet