New here; had posted over at tipna

[drds89]

Hi everyone,

I posted my MRI results over in that section.

2+ years ago, I fell on my 'tailbone', wearing coccyx protector, 2 months later after 'prostatitis' treatment failure, I wound up in 9/10 pain and pelvic floor tetany, urine retention, hospitalized. Thankfully, Neurology was called in after Urology, GI, Internist, Pain Mgmt, could not find anything wrong (Psychiatry was next?) and diagnosed me fairly quickly on day 4 or 5, though he had never seen a patient with it. (Thank you, God, for sending Dr B. so early in my case) & like most of you, had to travel long distance for PNMLT and CT guided block to confirm.

Unlike most of you, I got better over the course of several months and considered myself 'cured' off medications, exercising, working, sitting on my Ushaped cushion (upside down U). I then re-injured myself doing yardwork, maybe too aggressive home PT and stretches. A year later and I'm not better like the 'first time'. I have not sat in about 11 months; I lie down or stand FOR HYPERPROTECTION, able to stand a little longer each month, as feet, knees, back allow. (I'm 47, was in great shape, now a marshmallow). Toilet seat is fine, but the getting down there to sitting position evidently is sufficient to tweak my nerve. This worries me to no end, as it would seem to indicate the nerve/branch is really stuck down. I tend to keloid scar, and not show symptoms of disease until way late, so I had not rushed into surgery. (Symptoms are midline,perianal/rectal and perineal burning/sometimes foreign body sensation or 'prostate' fullness -sometimes like a variant of hyperarousal, though not genital-- no dorsal nerve symptoms-- sometimes bladder 'knives', and urinary hesitation/intermittency worse sometimes than others, burning afterward, esp the morning urinations, worse lying on R side down, relieved better L side down. Will awaken at night with rapid heart beat, not so much the burning. Flexing the R thigh as in getting dressed or hamstring stretch on the R will cause a flare/zap or delay onset of symptoms of days. L side is free movement, even knee to chest. I could probably sit for a few days and do OK, then BAM, I'll be in a major flare and out of commission for weeks. I don't get the sitting aversion, until way too late in the game, and have a lot of inflammation/ but respond to anti-inflammatories. Will stop there).

The sympathetic nervous system overdrive with rapid heart beat, weight loss, hot/cold sensations, GI upset, nausea, dysphoria (feelings of doom, hard to explain, the opposite of the euphoria of sexual pleasure I guess??), are MUCH better now 1 year on the meds:

Nortriptyline, Neurontin (small doses divided up, don't think it's doing anything but too afraid to stop it), Celebrex twice daily, and Klonopin, small doses split up so I'm not impaired and can work modified schedule; helps the burning, and some muscle spasms. Betablocker for when the autonomic symptoms show up,and I just stayed on them for several months to gain some weight back.

That's my story. I'm on the Hibner waiting list, but really don't want to do the surgery. I know you all understand how radically our lives change when this 'thing' appeared in our lives. In some ways, my current symptoms, pain level and functionality (except for not sitting) seem to be where many sufferers would love to be. But compared to where I was 2 years ago, I am a worm,.... I just can't dwell on that. The glass half-empty... I have to dwell on what I can still do and be thankful, still praying for a cure like the 'first time' but also seems like my time is running out. At a plateau for at least 6 months, plus, with the typical ups and downs. But if the surgery is the means by which God intends my healing, I have faith He will lead me that way without reservation.

I don't want to go into surgery and if not successful, someone (me) say, "Well, you were just going to be worse anyways; it wasn't the surgery that made you worse." I'll have to be at the point of no return, no looking back, no regrets...my family is probably there already, but I'm not quite there yet. If I had stayed at the initial pain level/etc. there is NO doubt that I would have had the surgery then (in Texas, I had not heard of Phoenix until last year.)

Don S

[Violet M]

Welcome, Don.

Like you, I had gotten better but then my PT had me doing a bunch of stretches and I think that's what put me over the edge.

You will probably know if it's the right time to think about surgery because you will feel like you have nothing to lose and things couldn't get much worse. So don't let anyone push you into something you aren't ready for.

Violet

[donstore]

Hi Don,
Thanks for posting. I have similar symptoms, minus the urinary burning. I am a big fan of Lyrica. Allowed me to sit on long flight over Christmas and have sex without usual flare. Now at 75 mg. twice a day with no spacey side effects. Gonna try 100 mg. this week. Have been on Vicodin (afternoon) and oxycodone (evening) as well for the last year. My case is manageable and better than most since I stand up most of the time at work. If I had to sit, things would be much more dire. Still I know that eventually I would do the surgery to have a chance at my old life despite the arduous recovery.

Don

[Lernica]

Drds89:

Your father recovered from the condition. You will too.

Lernica