Health Organization for Pudendal Education

I know ,I should be joyous that I am still on this earth. On Feb 2nd I fell and broke my fibula,so I have a plate and 6 screws in my ankle. I was on a knee walker for 8 weeks. Had the surgery on the 15th of Feb. I began walking the first part of April.
My legs do not seem to walk in unison . I went to the pain clinic the first part of may to have an injection for sciatic nerve . That hurt like a s.o.b. When I have steroids I do not sleep at night. So the next night I was sleeping very sound. Woke up at 1.30 needing to use the bathroom realllly bad.I was going so fast that I missed the door and smacked my face on the sharp side of the door frame of the bathroom.My head was bleeding . My face immediately turned black and blue. My leg was a lovely deep purple. I can still the splat sound. I hit so hard that it threw me to the middle of the bedroom.My husband went down to get some ice. The dogs barked at the noise. We all quieted own and went back to sleep.Went to t he clnic the next day and had a scan of my cheek bone. So the black and blue is finally dissapating. I still get staring.
I called my gp o yesterday for some stronger meds. She refused,which is probably a good idea. I got off of the oxycontin a couple of months ago. So I told her that I was going to take the valium. Told her I got them from. Dr.Chambi. She said I should get more rest and I will heal faster. I am all healed.
I decided to join a local choir group called forever young. This music is a bit more complicated than I have sung before. Some sing in English in this certain song.and some in Latin, coming in at different times.I am definately a soprano. The petson next to me poked me and said you are singing with the tenors.! ;;

What a series of mishaps. You poor thing! I am so sorry to hear that all this is going on and not more support from the gp. It seems you are exremely strong to make it through all the healing, take a moment to congratulate yourself and I was gonna say the choir must be fun until I realized you were in a different range than normal but hey so they had another voice in that range it should still be nice to get out with others. I am in a much better place with this condition but I can still relate to the subject line. There are still times that tough. I broke yet another tooth today and need to see when I can try to get it fixed around all my other treatments. The high of the day finding out another person here got an appointment with a doctor I recommended now if the doc can help her I will be very glad for her. We are here to struggle together and help one another. I do hope something even very small goes your way soon. Pleasant dreams ( close to my bedtime).
Janet

Oh river, so sorry to hear about your problems. I have no feeling in most of the soles of my feet , so am also a wall/ door/handle basher too, especially with my new lyrica (which I do like) Once I start to tipple over it does get difficult to stop, so can relate to your dilemma although I have much smaller bruises to show for it.
Hope things improve. Love the singing idea, but no one would have me I shall reserve mine for the shower.
Take care,
helen

Hi River,

I know exactly how you feel. I just want to die...After 2 - 3 months of dr hopping (and a stupid urologist who just wanted to do surgery), I finally got to a neurophysiologist who diagnosed me with PN.

Since then 75mg Lyrica twice a day....helped for 1.5 weeks, pain back. Up Lyrica to 120mg x2 day helped for a 1.5 weeks and the pain is sorted back again.

This thing is the worst thing that has ever happened to me, it just never ends. It feels like you dead from inside. And now Im here.

Im seeing a counsellor, before I go mad.

My best wishes to you.

Regards,
RJ in pain

Hi RJ. Welcome to HOPE. PNE is the hardest thing I ever went through for sure. I'm doing great now though so hang in there until you find the right answers for you. Lots of PNE patients do get better.

Best,

Violet

Would really like to hear about the lots of PNE patients that get better. Unfortunately we do not hear about them too much on p hope. I so want to be one of those.
I am seriously thinking of a nuerostimulator for this horrid sciatic leg butt pain. Oh,I guess it wouldn't take care of the butt pain. Then all I would have to deal with would be the pudendal pain.and the buttock pa in.

Hi Ellie,
Just a suggestion, but you may want to consider a pain pump trial before a SCS. You'd have to speak to a PM doc about these options. Possibly several different practitioners, as each had their own methods of doing things.
Depending on who does the implants (PP or SCS), you may get more coverage than you think.
Hugs,
Karyn

Ellie, I'm sorry you are having such a rough time. You've certainly been very proactive in trying to find the right treatment. Most of the people I know who have gotten better have moved on with their lives and don't hang around on the forum.

Violet

Hello everyone,
I had a peripheral stimulaton device implanted in Feb 2011 and it was the beginning of much progress for me. I'm improving, especially after my diagnosis. I believe the order of treatment is different for all of us but it's to be attempted one at a time so we can monitor closely the effects. Since the stim, I began pressure point techniques, then nerve blocks, a little (teeny) medication and now I'm in a great place. I hardly turn my stim on, I had 3 nerve blocks and have gone over my due date for the fourth but still take my teeny medication. I am seeing an incredibly gifted traditional chinese medicine practitioner and between his herbs and acupuncture have turned yet another corner the last month. Raphael (TCM) separated my pain from my brain, the fog cleared and he lifted my energy levels incredibly. Of course I have my limitations but I never expected I'd ever be able to get to this liveable state.
Don't lose hope, the PN recovery is a very slow one and when it's happening you don't see it. But every time you have a moment, or second that's ok, that could be the beginning of progress.

What I found with PN is that what you don't do is just as important as what you do. I had lots of help at home daily so not lifting objects, (even watching my simple activity like carrying plates to a table - I'd carry them one at a time... if it was a good day), avoiding the car, avoid aggravating the issue as much as possible for as long as possible, makes a very big difference. Whether this is an injured part of our body recovering or our brain returning to its 'old ways' it works.

My story is in more detail here: www.pudendalnerve.com.au

Don't give up!