Health Organization for Pudendal Education

I went on Health Unlocked and a woman from Canada said if you wait too long the surgery won't work. I'm feeling pretty beaten up. Yesterday seemed to be the worst day yet but these last years have been a blur of pain so I don't even know if my feelings are accurate. Maybe it's just because I'm suffering now.

Can I ask when your surgery is?

I knew one woman who had successful PN surgery after 15 years.

Violet

I just had surgery after 4 years of pain. I don't know if it will be successful but I'm hopeful. But, in the months leading up to this, I was waking up with pain 1-4 times a night and getting more ice (I have a mini-freezer in my bathroom). This made me worried that I had waited too long, because waking up at night with pain can be a sign of being too far along to have a successful surgery. But, Dr. Hibner told me in the post-op discussion that my nerve was quite flattened in the area between the SS and ST ligament but that it became round again after he removed the scar tissue. So, I think my nerves (despite all my wake-ups) were not too damaged to respond to the treatment. Could you visit Hibner in Phoenix for an assessment?

April

I was waking up a bunch during the night before PNE surgery too -- that is, if i could even get to sleep in the first place. Are you sleeping better now, April?

Violet

I am, Voilet! My sleeping did improve in the last several weeks leading up to surgery because I switched from nortriptyline to amitriptyline (I think I'd developed a tolerance to nortriptyline and the change was different enough for it to help me sleep better, so what I described above was prior to the medication switch.) But my sleep is perfect now. I have had to get ice only twice in the middle of the night since my surgery (we even moved the freezer out to the garage. That was a glorious day!), and it was just one wake up each. And I am almost always without pain in the morning, so I can lie in bed in the morning without racing to get ice.

April

April how are you now?

Hi Saint,
I am doing well. Last spring I was at a place where I went without any pain for many days a time. That is rare now, so my pain did go back up. I don't know if it's just the healing process or if it's gapapentin tapering or something else. But, I am in much much less pain than before the surgery, and I'm on far few meds. I think I'll be off of everything in 6-8 months. So, I am very glad I did it, and I'm also hopeful that my pain levels will go down again, at least somewhat.

It sounds like you are not doing well at all. Did you try surgery?

April

The wound vac did not work on me nor did the surgery. I had 2 failed PNE surgeries and no relief with either and immediate Re entrapment with scar tissue. I think the surgery needs to be perfected a million times over what it is now. We can send man to the moon but can not help those of us who need so much help. It makes no sense why so many doctors dismiss us and just want our money.
Best of luck