Health Organization for Pudendal Education

Hi everyone!
Am female, 64, retired. Almost 4 years ago I collapsed on the bathroom floor (bent & turned to wash my face), heard/felt a loud crack and fell to the floor. Thought had broken a leg. The pain was unbearable...After a long saga of emergency room, injections (epidural, nerve root cortisone), medication of all kinds (Tramadex, Arcoxia, Abitren, Elatrol, etc.), physiotherapy, yoga, swimming, Pilates, walking, reflexology and whatnot...nothing has helped. Have been taking Percocet 10 (1/4 pill when necessary - does help a little) for over a year and this is not an acceptable solution for me. Almost underwent nucleoplasty a month ago but cancelled because the surgeon said it would not help with the pain when sitting. Then he showed me the shape of my coccyx on the screen after my last CT - an angle of almost 90 degrees! I almost fainted. He immediately said this is not operated on. The previous CT and MRI show disk bulges at L4-L5 and L5-S1 pressing on nerve roots.
To sum up: am living in chronic pain, 24/7,in the lower back, between my legs and paresthesia (strange sensations like electricity, ice, numbness) along both legs, especially in the upper inner thighs.
The only real relief - for 3 wonderful hours - came at the Physiotherapy Clinic in the hospital when I spent only 20 minutes in a bed/table? that stretched and relaxed thespine after being computer programmed. The back pain disappeared 95% after only 12 minutes and the pressure/pain between my legs also almost disappeared after another 6 minutes. Then I got 3 hours of relief...and then it all came back.
Is this PNE? Could it be that I dislocated my ccocyx when I fell? Is this something you are born with (never had pain before while sitting)?
Am waiting for a consultation with another orthopedic surgeon in a few weeks.
Any ideas, advice?
Thanks,
Mia

Mia
I have been fighting coccyxdynia and nerve pain
since this summer. I find it unbelievable how
worthless the medical community is when it comes
to these conditions. There *are* surgeons who remove
the coccyx if you need it.
Go to coccyx.org. If you are near New Jersey
Dr Patrick Foye does diagnostics and can recommend
surgeons.

Kayla

Mia, it sounds like you are having pain in more areas than just the pudendal nerve distribution area or the coccyx area. It is possible to have pudendal neuralgia along with other problems but I don't know if that's going on in your case. Is your sitting pain mostly in the coccyx area?

Violet

Hi Kayla and Violet!

Sorry for not having reacted before - did not understand how to do it technically. It is a great relief and comfort to have found a place where to express what I'm going through. Finding a solution here would be wonderful but is probably not realistic.
As I wrote before, a well-known orthopedic surgeon told me very clearly the coccyx is not operated on! He did offer nucleoplasty for two bulging disk hernias but I had read that the success rate is only 60-70%.
It seems there are two problems (are they related?): pressure on nerve roots and a dislocated coccyx. Am waiting for a consultation soon because I am no doctor (are they really that helpful and supportive?) and don't want to come to conclusions without certainty.
One thing is for sure: 99% of the work has to be done by ME. This is scary and exhausting and depressing.

Can I help with anything? Sometimes just exchanging information can give a glimmer of hope.

All the best,

Mia

Mia, you do have to be proactive in finding a solution. Just do a lot of research before deciding on surgery because it's not always the answer.

Violet

Hi Mia,

I'm so sorry, I didn't mean to imply that surgery was the next step or first line of treatment.
I only mentioned coccyx.org because I've spent time on there and know that some have had coccyx removal surgeries.
There is also a private Facebook group where people are posting pictures and discussing post-op, so I know it has been done.

I wish you the best and hope that the consultation can offer you advice on whether the nerve root compression can be relieved.

-Kayla

Hi everyone!
First of all, Happy New Year and health before anything else to you all.
Will check all your suggestions and want to thank each and everyone for ideas and comments. All are welcome.
Am managing pain with Percocet 10 (1/4 pill when necessary) but don't see this as a solution in the long term (my GP has no problem!). Read about Marinol and will ask the consultant in two weeks.
Read about Dr. Filler and feel less certain about him than at the beginning.
An idea (foolish?)...has anyone tried lying in a hammock to ease the pressure on your lower back? Want to try this because seems harmless.
Grateful for any replies,
Mia

Hi Kayla!
You don't have to apologize since surgery has been suggested to me from the very beginning (for the disk bulges/protrusions...). Wanted to try everything else first. Up to now every treatment has been a failure except for the stretching table/bed and Percocet 10.
Have been reading about special shoes (Apos?) - will "investigate". Same about hammock!
All the best,
Mia