I have a question - would appreciate some feedback.
Horrible rectum pressure & bad lower coccyx pain began 10 months ago. After innitial 'flare up', this came and went as a dull, annoying pain until November - BOOM, pain, came and never left.
Has been so bad I have been basically debilitated the past 3 months, a prisoner in my home from pain. Horrible rectum pressure (feeling like there is something in there, something really big & super uncomfortable); sometimes knives in the anus; whole rectum inside super sensitive/raw feeling; horrific lower coccyx pain (had very detailed coccyx MRI & CT, all perfect, along with a million other tests); painful & crampy buttocks, almost like fists turning in there; if I sit fit for a minute it's crazy painful & bring on even more pain - and now pain is in all positions, standing & lying down too.
And then, to my great dismay (!) last week it started in the vaginal area...lightning bolts & sharp pains.
Then today felt like pains in the super low pelvis area. It's getting just worse.....Have tried ever med - on crazy high doses of morphine (sometimes a 30mg pill doesn't help) added with lots of liquid oxycodone can sometimes take the edge off - though have had times when nothing helps & just paralyzed in pain!
Was diagnosised with PNE by 2 dr. (in 2 countries) based on symptoms & a block (under xray) that was supposed to bring relief but only gave 6 hours of heaven.... However this was more in the ganglion impar area, so a bit questionable.
I will hopefully be having EMG & PNMLT in the next week or so - my request. I can't imagine it being anything but PNE given symptoms, but want to be 100%.
My husband and I have began to explore surgery options - not a single specialist (hardly a person) here who knows anything about PN, let alone a surgeon, so will have to go abroad. (I live in Israel.)
My question - a wonderful family member, a doctor, who learned about PN with me on my journey is trying to be super helpful & sent me the following email:
"Good news! There is help!! THE treatment for this is VERY specialized physical therapy for INTERNAL PELVIC MASSAGE. Do NOT go to anyone who does Kegel exercise..this will only make it much worse!!!! Dr. xxx said we are very lucky in Pgh to have the specialized PT people. It is a 6 week program of physical therapy. Now we're are super optimistic!"
(Note, I am from overseas, Israel, so it's not exactly next door & I have family with young kids, but would do anything to get my life back....)
This sounds to be a bit unrealistic though. Can someone with my serious/debilitating painful level of PN be treated just like that? I think I would need anesthesia to be touched some days...Sounds too good to be true.
Would be so greatful for opinions & others experiences (especially as this wonderful person is really trying to be helpful....need some backing up as to why I don't think this sounds to me like the magic treatment, though maybe I am wrong!)
Thanks so much!!
