Hello! New to the forum

[PNVeteran]

Greetings to all, just joined forum.. thought I would share a bit of my story.. as I have found comfort in hearing others.. such a relief not to feel alone.. and to be in a place where folks know what your talking about! I bet all of you would agree on that..

I feel I am a PN/PNE veteran survivor now that I have been dealing with this condition for 20 years. My PN started as diffuse ball of burning pain where the PN nerve originates in the sacral hollow. It began with moderate burning that lasted 2days every other month .. then 10 days every month.. moved into the L pudendal branch and hit real hard with electric shock pain the entire length of the pudendal nerve on left side and remained very severe for years along with sudden brief (30mins) episodes of arousal symptoms so intense I thought the neural feedback to my brain would cause some kind of brain damage!
I continued working for at least 10 years before I hung it up and became disabled. I could not find any definitive treatment and pain medications suddenly became taboo. Currently take Cymbalta, Wellbutrin, Remeron and oxycarbazapine. My muscles spasmed and contracted vey badly over time from sitting.. my pelvic floor was 2 inches up in my vagina.. where it didn't belong.
I really think it can have multifactorial causation.. it seemed to begin as a post herpetic neuralgia associated with genital hsv.. or at least hsv outbreaks caused severe flairs. But I noticed during multiple rounds of Ipelvic floor PT I noted that any stretch of the pubococcygeus or Levator ani muscle caused temporary numbness for 30-60 mins then intense pain as the sensations returned.. so I am not sure which came first but that seems to indicate a compression element. I did end up with post herpetic neuralgia in multiple areas including trigeminal neuralgia. After the PHN the nerves are never normal.. but most of the other sites are only painful if aggravated by some other factor like air conditioning, rubbing, etc
I feel I am too tired and too poor to go through another round of doctors trying to find the right one that can actually do anything. I appreciated other posts about spread to other nearby nerves over time.. I have similar pain in my coccyx, pubic rami, "sitting bones" and along the left sacrum now. I really had a hard time for years till I quit sitting all together. No long drives. no sitting at home, no restaurants, movies, etc. Now my biggest aggravator is bowel movements.. so hard to talk about but a real thing... as many of you know. No pain with BMs but within 30 mins and then lasts till I get into a deep sleep for some hours. Needless to say I don't like to have daily bowel movements. Everyone is different but I will share my very small lists of personal pearls:

1st. Trust yourself, trust yourself, trust yourself..
2. Be very precise in describing symptoms.. Kudos! as I see alot of that in this forum.. its very important.. diagrams of relevant female structures are a big help
3. There are many anticonvulsants.. if the first doesn't work.. try another.. I found carbamazepine to be the most helpful although I had to stop it due to bone marrow suppression (temporary, resolves with cessation of drug). It is a nerve disorder so if your provider is unfamiliar with anticonvulsants get a consult with a neurologist who is. Also, gabapentin, Lyrica are not always benign. I developed serious and rapid depression and suicidal ideation on these medications.. so trust yourself..
4. Make a real effort to stop sitting... especially if you don't have pain on awakening...
5. I have found a low residue, high dairy diet works well for me.. no bulk laxatives or fiber for me.. I eat mostly yogurt, cheese, meat, some starching veggies, light salads. I include just enough dairy lactose (cottage cheese and ice cream) to keep my bowels working. Even after 4 days of no bms they are always small and very soft.. Anything that increases BM frequency is a no no.. (like magnesium, stool softeners)
6. Once I understood the rational/utility of THC I became a regular user.. It doesn't really treat the pain.. but it short circuits your short term memory and causes an increase in distractibility.. I find Sative products better at improving my sense of humor.. What THC does (for me) is it allows me to do next to nothing on bad days without fretting, I can watch a tv show, and have a good laugh. It turned me from type A, needing to be productive all the time .. to type B.. don't sweat the small stuff and it's pretty much all small stuff..lol...
7. Stay calm as you can... but it can take a long time to develop.. such a frustrating condition...It helps to not consider physicians, therapists and psychiatrists as of special people with exceptional traits.. consider they are like a cross section of your family, friends, acquaintances and community. Often flawed, unbalanced, biased, or simply not very good at thier job.
8. I didn't think I could ever adjust to having a grinding, tiring pain on a daily basis.. but I did.. humans are great at adjusting to just about anything.
9. Now that I am older a sense of peace is all I really need when I think about it.. and self compassion.. I have trouble keeping up with many things,,housework, cooking, appointments, but when I am ready.. I am ready.. so I don't push.. I wait patiently for that readiness.. since it does happen sooner or later...I have been dropping those external guideposts of what I "should" be doing.
10. I have learned to be alone without being lonesome. This condition can be isolating.. online social opportunities are fine. Don't let a certain degree of aloneness become a heavy burden you need to fix to be a "normal person". If you could have a well cushioned recliner available everywhere you went you wouldn't be isolated. The world is not set up to accommodate persons with physical limitations.
Best of luck to everyone, I'll be round again . Thanks for being here and thanks for listening. I really appreciated this opportunity to share.

[Violet M]

Hello PNVeteran,

Welcome to the forum. I'm sorry to hear you have been on this PN journey for so long, but I appreciate you sharing your words of wisdom and what works for you. I am a type A person too, so I admire your ability to let go of some of the not so important things. That's tough to do.

When you described your difficulty with BM's it reminded me of a gal who used to post on this forum who would do warm sitz baths after a BM to calm things down. I don't know if that could help you since your pain hits 30 minutes afterward, but who knows? Might be worth a try.

Had to laugh at your "well-cushioned recliner everywhere you go" comment. I could use one of those even though I'm mostly cured of PN but I can see how it would especially be handy for people still struggling with pain.

You sound like a real fighter. I admire your courage.

Violet

[PNVeteran]

Hi Violet.. clearly another veteran.. thank you for being here consistently for years even after you got better! Like the idea of the sitz bath.. a regular bath makes it worse.. from sitting on hard tub but a sitz bath might help calm things... warm certainly helps me better than ice.. which makes things worse. Thanks for the tip.