Health Organization for Pudendal Education

Hi,
I had PN symptoms after a kickboxing class for about 10 months. I had pelvic floor physical therapy and they went away to the point where I didn't have to take any medicine and could sit without a cushion and drive comfortably. This lasted for about a year and then suddenly I started having symptoms again. Before the symptoms began again, I had been doing more walking and some light stretching. Has anyone had a similar experience? Thanks for any information.

Sarah

I wish

I had a huge reduction in symptoms after Physical Therapy for the pelvic floor for about two months, i was still taking 10mg of Elavil, but basically was symptom free as long as i didnt do anything to aggravate it. Then, a couple of days ago -- it came back, only mildly. I am going to see Sheldon Jordon in LA in a couple of weeks and am awaiting MRI results from Potter. Very frustrating!! I find that sometimes stretching helps -- sometimes it makes my foot numb??

I have rectal spasms(Levator Spasms) that are caused by PNE. From April to July of 2010 my pain level went from 6 or 7 down to 1 or 2. I really thought these spasms were going away,but in September the pain level went back up to 6 or 7.

I started with PGAD symptoms in March of 2010 and they lasted 3 months. No pain, just the intense arousal. That went away til October of 2010, when I got the same symptoms again for 2 1/2 months. Still no pain, and the PGAD disappeared on it's own once again.

My current episode started last June with intense arousal again right after my dental surgery, and I still have it 9 months later. This time I did experience pain, and still do from time to time. I've gone through two full-blown pain cycles, then my doctor put me on Lyrica and it's helped quite a bit. I did have one break-through cycle, but it was greatly diminished and wasn't anything I couldn't handle. I've had a couple of uncomfortable days here and there, but nothing like I experienced before taking Lyrica. I'm on a low dose (75mg twice per day) and while it helps with the pain, it doesn't help at all with the arousal.

My flare-ups were always acute until this latest. That said, it was quite bad the second week of September, then gradually got better once I found a knee chair and a donut. I reduced my sitting, took steroid anti-inflammatories, and by the third weekend in October, felt almost healed. I was sitting for an hour straight in a real chair. I was quite good for the next week. The following Monday and Tuesday, I sat in a knee chair for 8 hours straight both days, and by the end, felt I'd overdone it

Since then, I have avoided long-term sitting and took another course of anti-inflammatories. I am now in three days into a lovely Japanese vacation and avoiding much sitting. The testicle pain is pretty much gone, but after an hour of sitting day before yesterday, my perineum felt bruised. It's not awful, and walking makes it go away. Today, I did tons of walking and standing and even, daringly about 5-10 minutes of sitting. By the end, had the bruised feeling though, interestingly, when I stopped thinking about it, it went away generally.

Is the wound healed and the nerve just being overprotective now? Is it a bruised nerve that needs more time to heal? Who knows.

Anyway, long story short, I did have an episode of near normality, overdid it, but seem to be getting better again? (*knocks on wood... sitting in a hot tub, which feels great*)

I had acute PN symptoms between 1995-1997(with classical sitting pain) but it nearly vanished between 1998-2004. It returned in 2004 with a vengeance and from then on there has been ups and downs, but never any significant remission.

When I think back, I have had periods of flare and remissions since I had a bad fall as a young boy, which I believe may have led to the formation of the cyst ( or caused a small asymptomatic cyst to go symptomatic) . Only in 1995 it took the classical PNE form but I had no diagnosis or treatment back then, and went from doctor to doctor without getting any help. No idea how I went nearly symptomless for six years between 98-04. Just wish something like that could happen again.

I thought I would give an update since people who get better rarely post.

Once I took to standing instead of sitting and found a very good cushion (flat, middle cutout) for driving, life became a lot easier. And actually, I could sit if I curled one leg under me so no pressure was on my perineum. Since I sit like that normally anyway, it wasn't a big deal. For January and February, the pain cycled worse and better, but with a healing trend. By mid-March, I was essentially asymptomatic so long as I didn't try sitting normally. This lasted a blissful three months. I tried sitting normally, and I got some twinges, nothing horrid.

In late November, I developed the opposite to the dorsal pain, more sciatic-ish, down my butt and back of thighs. A daily stretch regimen seems to have cured it.

I do not know if this is related, but recently (a week ago), I started getting dull nerve pains in my penis. It travels. The head, the side, right now, midway on top. It's annoying. I went to the doctor who cursorily diagnosed prostatitis (it hurts when I stand and lie down, not so much when I sit), and gave me Sulfamexalone. Two days in, the pain went away, a day later, it's back and moved. So I don't know if this is related to my first problem or not.

No incontinence, no ejaculation problems. I do pee in the middle of the night, but I think I always have.

Anyway, had I posted four weeks ago, I'd be telling you I'm totally better. Right now, I'm not quite sure. It certainly does *not* hurt where it used to, though.