New to forum, 4 years of pain

[Renewed_Being]

Hello,
I just found this forum this morning. It all started with a penile injury 4 years ago. In the beginning the doc told me I has some internal bruising & should be fine in a few weeks. A month later, I was still in pain & having contractions at the base of the penis, so I went to a urologist. After a very brief examination, he concluded that I had Peyronie's disease & had me on vitamin E & Ibuprofen. After 6 months of so there was no improvement. I went to a second urologist. He said I did not have Peyronie's & that he could find no scar tissue. I asked him what it was & all he said was "I don't know".
At this point I was completely ticked off at the whole medical establishment & just stopped going to doctors for a while.
I went to a naturopath, a traditional Chinese medicine practitioner, some energy healers... to no avail.
Then one day I discovered blood in my semen, went to another doctor & found out I had epididymitis. It went away after a couple weeks of antibiotics, but I still had the penile pain & by this point had developed pain in the perineum. He referred me to another urologist who diagnosed me with chronic pelvic pain syndrome. This was about a year ago & she referred me to a pelvic floor physical therapist who has been awesome. Her name is Christy Ciesla & I highly recommend her if you're near the Rhode Island area. I've made great improvements with her, but seem stuck at a certain level. She suspected that I may have pudendal nerve entrapment & hooked me up with Dr. Conway up in New Hampshire.
Two days ago I went for my first appointment with Dr. Conway. He did a physical examination & believes it is the pudendal nerve as well, so I'm scheduled for an EMG test on September 5th. I guess after that, the next step is nerve blocks. I'm really hoping they help, this is an absolutely horrible condition. If at all possible, I'm going to try my best to avoid surgery.
I'm planning to try out one of those ayahuasca healing retreats in Peru this winter when I've saved up enough money & vacation time. Who knows... maybe the Peruvian shamans know something more about healing then the Western medical doctors do? I suppose I'll find out.
Well, that's my story & where I'm at. All I can do is keep on keepin' on & hope things get better from here. I suppose they already have. The physical therapy has helped a great deal, but there's definitely a ways to go. It sort of seems like peeling away layers of an onion I guess. Also, I just started taking Lion's Mane mushroom extract. It contains a compound called NGF (nerve growth factor)... I'll keep you posted on how it works.

[Violet M]

Hello RB,

Welcome to the forum. Sounds like maybe you are on the right track towards getting better. I see nerve blocks as mainly diagnostic although I do know of docs who give a lot of repeat nerve blocks. Just be careful about getting too many because I know people who have gotten worse from too many of them. I've heard Dr. Conway doesn't put much stock in the 3T MRI from Dr. Potter but since you live on the east coast it might be something you want to consider if your insurance will pay for it. Also consider ruling out related conditions such as inguinal hernia.

Take care,

Violet

[Renewed_Being]

Thanks for the info, Violet
I had never heard of inguinal hernia, but I just looked it up & it doesn't sound like what I'm dealing with as there is no lump. My urologist suggested an MRI, but I put it on the backburner since I'm a bit overwhelmed between weekly physical therapy, acupuncture, and now the appointments with Dr. Conway that I have to drive 75 miles to get to.
Oh wow! I just looked up the 3T MRI & they do it right in the same building I go for PT. I'm going to have to inquire about this.
Btw, what makes 3T MRI different than a regular MRI?

Thanks again & take care,
Joe

[Violet M]

Joe, there won't necessarily be a lump with an inguinal hernia though. Do a search on Don's posts (username donstore) for more info on inguinal hernias. I'm not suggesting it's what you have -- just saying it's something to rule out, among many other things. 3T MRI is going to have better resolution than regular MRI.

Violet

[Renewed_Being]

Thanks Violet,
I was looking at the Wikipedia page initially. Don's posts were a bit more informative... probably since he's the one going through it. Well, it's definitely worth a shot. I'll have to call my urologist back (with my stubborn tail between my legs) & get the script.

Take care,
Joe

[Violet M]

Well, I hope it's not a wild goose chase but I just wanted you to be informed. Mostly, I just try to help new people see how important it is not to rush into anything without considering all of the options.

Best,

Violet