Health Organization for Pudendal Education

Meaker, please stop that nonsense.

Essexgirl1 I'm so sorry to hear you are in great pain physically and mentally. I pray you are well soon!! I'm sorry I don't offer much advice medically as I believe I have recently discovered my own disease caused by a vehicle accident. Do you think your injury could be from horse riding?? My trauma was caused by a strong blow/hit to the sacrum/sacrotuberosity area. You may research the injuries those who ride bicycles experience (sacrotuberous and sacrospineious ligaments pinching the Pudendal nerve. Maybe the pounding of riding a horses is similar to a bicycle seat trauma. Stay strong and keep believing for the right help, diagnosis, and healing!!!!

Janetm2 and stephanies.....I will be taking your advice to see a PT who knows PN. Yes MIchigan is about 7 or 8 hours to the border. Maybe the PT can get the Levator Ani syndrome/pelvic floor myalgia to relax and stop spasming. I know that would decrease some of the pain. I'm hoping and praying that the Pudendal Nerve has not been damaged and will heal up if it was squeezed or pinched from the vehicle accident. Gonna start on Omega 3 fatty acids and have already started taking 20 drops of Guna flam homeopathic anti inflammatory.

Anyone know of the percentages of nerve blocks that cause damage or trauma while administering??????!!!!!! because I fear surgery and a pain block injection as I hear others have been hurt by this???????

Hi , thanks pleasebePNE. No Im pretty sure it wasn't horseriding. I only plod occasionally. It was definitely the new job/chair. I would nearly be screaming in pain sitting on it. It was like sitting on concrete but Im not very assertive. I asked for replacement and wasn't allowed and just figured I was over reacting and tried to ignore pain but then ended up trying to get medical advice then resigned because of the pain. After 4 months chair changed but I cant sit anywhere. Im having trouble getting GP and specialists to listen. They want to address my back and whilst I appreciate that has issues and you can get referred pain I know how my body felt and I was swelling up on the ischial tuberocity area and its so painful to touch. That wouldn't be back I don't think. How does everyone get diagnosed? Does anyone use ultrasound for diagnosis? Steroid injections in bursas? Im not sure if I have PNE as do not have pain but have the nerve sensation through my ladies bits and anus. I did wonder if the swelling from a tendon on bursa problem could cause this. I am not getting any support from GP and would appreciate any advice on how to get diagnosis etc

Pleasebepne -I am not sure of percentage harmed by blocks especially since I was lucky enough to be unharmed. Surgery also helped me and I am hoping the PT can give you some relief. Time for nerves to heal unfortunately can be years. I had surgery because I knew I was rapidly getting worse and thought I would be 24/7 pain level 10 and lose my job if I did not do something as well as very liw quality of life. It was 2011 and I was not yet part of this forum and we did not have as many options as are coming up.

Essexgirl1 - my diagnosis started with a PN aware PT (see list off the homepage). They sent me to Dr Marvel and he felt agreed with PT based on my history and nerve blocks but confirmation of PNE was not done until he was doing surgery on me. I was lucky to mostly have supportby doctors but now just running into a new person at my pain center that thought it was my back after I fell but the "back" pain was due to my pelvis being out of whack that causes pain all around(low back, pubic bone and pelvic rim on my sides that I thought was hip). She said I was not getting better quick enough and sent me for a lumbar MRI that did show show anything wrong with my back but flared my nerve and I now am trying to recover from that! I feel your frustration and I am going to bring the letter for medical professionals (see FAQs off homepage) plus some writeups from PT to try and get her to understand my case. I was in pain late in the day for her appointment and did not have the strength to argue so my next appointment is early in the day and I hope to get through to her (she had not read my file and just assumed I had no reason not to be cured by then). Actually I am surprised I was switching so soon to every other week PT from weekly and ended up stabilized in 2 months when after surgery it took 2 years. I will see how it goes or just have to stick with the head guy that seems to get it. It is such a disadvantage that so few in the.medical community do not even know about the nerve let alone these conditions.
Janet

Thanks Janet but there are no PTS on list in England unfortunately. I am having so many issues at moment with cervical discs and carpal tunnel syndrome and it is just so much to take at moment. I just want one thing sorted. I was thinking of having ultrasound at a sports injury place to rule out other damage to tendons etc as there seems to be so much swelling on ischial tuberocity area I wonder if I get the swelling out would the nerve problem go...I am so distraught and depressed Im not sure where to turn next. I dont think I can take much more. As I think I mentioned I had bad side effects from Lyrica which I am struggling to withdraw from so this is 24/7 irration. I have a hospital appointment this evening re my back so I know short car journey will mean days of burning and pain after. I just want a diagnosis and happy to pay but no one seems to have any knowledge in UK and my GP refuses to send me places, I suspect he thinks I make things up or am mad!....

Essexgirl1,
Dr Baranowski seems to be the UK doctor but I could not find UK physio. See the UK section. Sorry I am not up on the UK resource.
Janet

Sorry Essexgirl1....I came to the library for the internet to respond to your post but I just cant handle the pain I'm in now that I sat on the chair!!! Life is hell. we will talk soon.
and you too aJanetm2

Essex girl

There is Dr (phd) Ruth Jones in Southampton who is a PN aware physio and also Maria Elliot in London who may be nearer for you. Also Helen Keeble in Chelsea.

Rosemary x