Health Organization for Pudendal Education

Hi I'm Lew.....I believe I have discovered/diagnosed myself that I have PNE. I need to find the right PNE specialist to see. I did a self internal rectal exam with my middle finger and found the area of my pelvic floor over the sacrotuberous and sacrospineous ligaments on the right side is painful to the touch and increases what I believe to be Pudendal Neurolgia. I hope PNE is what this is because I've had a treacherous last 23 years.??????? PLEASE HELP AND LEAVE COMMENTS!!!!!!!

23 years ago I had a vehicle accident receiving a blow to the right sacrum/and sit bone. The symptoms I list below where all tormenting me within 1 years time following the vehicle accident. I was 20 years old when I had the accident....I'm 43 now and still severely suffering.

23 years of misdiagnosis, severe chronic pain with depression, with its associated mental health issues including frequent plans to commit suicide. I've been conned, disrespected, abused, robbed, physically traumatized, deceived, scammed, misled, by several proud, insensitive, over confident, un-apologetic, alpha male and females who have defamed any sense of the oth which doctors swear to. My last penny is in their bank accounts.....and at my demise they have financed their vacation homes and even paid for their childrens' college educations. I saw an attorney last month to make plans to file bankruptcy. I pressed hard and was determined to work for the first 21 years, however, I haven't been able to work the last 2 years.

My symptoms include: pain with sitting, Levator ani syndrome, pelvic floor myalgia, constipation, weak erections, reduced sensation in the penis during sex (also penis is shriveled/cold feeling/smaller/with a reddish or purple color when not erect), dull ache pain in testicles, prostitis, weak ejaculation, leaking bladder, frequent urination, a feeling to urinate when bladder is empty, increased perenial descent (pelvic floor muscles are pushing like during a bowel movement and rectum is pushed outward), pain all throughout the perenium(pin prickling and burning), weak abdominal muscles and tight/painful low back muscles, Temporal Mandibular Joint Disfunction (from clenching jaw and teeth tightly day and night from severe pain/with the associated symptoms/cycle of racing heart/heart palpations/anxiety due to adrenaline/fight or flight syndrome). Spasms in right hamstring, general leg tightness and tingling burning in right foot, abdominal pain with loud gurgling sounds, bad gas/flatulation, short term memory loss.

PLease HELP!!!! I live in southern INDIANA......anybody have advice???

Hello Lew,

Welcome to the forum. My advice is to go to your doctor and show him/her what generates or reproduces your pain and ask for advice. You could also see a urologist or if no luck there, a neurologist. If you are female, you could also consult with your OB/GYN to start. You can also get an assessment from a pelvic physical therapist.

Stephanies

I think I made it clear I'm not female. I'd prefer well thought out comments.

Your post was edited to include details AFTER I took the time to reach out to you beyond the five or so words you had previously posted which provided zero info about you or your symptoms. Good luck.

Lew,
I'm pretty new to this as well and started with my OB-GYN thinking I had a simple UTI (they usually treat me for everything instead of a primary MD). As it turns out I didn't have a UTI but was sent to a urologist because a lot of my symptoms seemed to be urinary in nature. I honestly thought I had a golf ball in my urethra. The urologist misdiagnosed me with interstitial cystitis (IC) and put me on tons of expensive medication that didn't even touch the pain. One day while reading through the IC forums I came across a woman that had been misdiagnosed with IC when she really had PN. After more research, I pretty much diagnosed myself and began to search for an MD to treat me. I live in NC and there weren't any listed on the search I did from this website. I did find one in SC and willingly made the drive. I had the nerve conduction studies and a nerve block all in the same day with a wonderful doctor that really understood what I have.
I didn't see any physicians listed in IN but there is one in Michigan that treats men. I don't know what kind of drive that is for you but it may be worth it. I also discovered that there are physicians that will treat this if you know what questions to ask. I'm going next week to a sports medicine physician that will handle my meds and I'm going to an interventional radiologist on 12/22 about the next nerve blocks.
Sorry for the lengthy response but I know exactly what you are going through. I wish you all the best!

Welcome Lew,
We usually suggest seeing a PN aware PT since they can help with muscle issues and can help with diagnosis. There are more of them listed off the homepage than doctors and you may get to see one sooner than a PN doctor (list off the homepage but breezy might be right, Michigan is closest?). I am sorry to hear of all you have been through and hope you are now able to find a diagnosis and treatment. The FAQs have a wealth of info and a letter to medical professionals that might help educate your primary to get you some pain management? That is another thing we suggest to get the pain under control. Best of luck.
Janet

pleasebePNE wrote:Hi I'm Lew.....I believe I have discovered/diagnosed myself that I have PNE. I need to find the right PNE specialist to see. I did a self internal rectal exam with my middle finger and found the area of my pelvic floor over the sacrotuberous and sacrospineous ligaments on the right side is painful to the touch and increases what I believe to be Pudendal Neurolgia.

Lew, I am really curious as to how you were able to figure out that you were pressing on the area where the sacrotuberous and sacrospinous ligaments cross when you did a rectal exam on yourself. Do you have training in this area?

Best wishes with your treatments and finding the right diagnosis.

Violet

23 years of pelvic pain and you are only learning about the pudendal nerve now! How interesting.

to: Stephanies ok thanks for helping here. Just a misunderstanding! Appreciate the encouragement.
to: breezy4569 thanks for the thoughts and idea.....I'm so glad you have found the right help......I think I'm finally on the right track!!
to: ezer....unbelievable RIGHT......I hope I have it right because I just broke through another dark period of suicidal thoughts.

Hi everyone

Thankyou for letting me join. So glad to have found this site.

My history-have not been diagnosed officially. It sounds crazy...new job 10 months ago had extrement painful chair. I was refused an alternative and went home crying in pain for 4 months until I resigned. I have been under NHS and private insurance (self pay and when I had job) and not getting anywhere.

I can not sit longer than 5 minutes. Burning seat bones. Swollen. Swollen hips and SI joint. Back of hamstrings hurt. Greater tronchanter swollen.

IOnly treatment I had was a random thigh injection that did nothing. GP refuses to believe pain. I keep being told its chronic pain syndrome or over sensitized , in my head etc.

I can physically see more swelling on side that wasnt injection. I can only sleep on back because of hip pain but end up with ice packs under butt or trying to raise butt on pillow. I have no pain in my privates however I feel a nerve going through both ladies bits and anus.

Is this pudendal nerve? Dr refuses to listen. Im not sure if nerve infamed because of inflamation due to other causes. Im thinking about looking at ultrasound to see if this will detect and bursa problems in ischial area or tendon and ligament issues. Has anyone done this? I dont know where to ask to be sent.

Ironically in trying to explain to a physio he got other excited on exwercises that hurt my hips and back and now have back issues and stenosis and nerve impingement in cervical spine so Im so upset at how this has spiralled and my life sometimes doesnt feel worth living.

Can anyone advise re other diagnosis, who to see to rule out things etc. I am in UK., I would happily pay and rob a bank to get some of my life back.

A year ago I worked full time, was social, rode horses and fit and healthy. Now I am housebound. Desperately trying to get off lyrica because side effects upset me but withdrawals and pain even worse. On oxycodone (targinact) which I dont want to take long term and doesnt seem to help.

This thread looks amazing. So much to read but desperate to hear of anyone that can help me. It was disheartening to see not many people in uk treat this and yet so many sufferers on this board alone.

Sorry for the rant and thankyou for accepting me. I am so grateful just to hear I am not alone and I am not coping very well with the changes at the moment.