Hi, all. Need some help.

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make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: Hi, all. Need some help.

Post by make-it-stop »

Good to hear you've gotten a little relief from the blocks and the medication. Good luck in making your decision on whether to get surgery!
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Alan
Posts: 62
Joined: Sun May 22, 2011 11:44 pm

Re: Hi, all. Need some help.

Post by Alan »

Sorry that all of you are going through this. I am from California and my pudendal pain began when I pulled too hard on the springs of my daughter's trampoline while putting it together. I immediately felt like a fiery heat sensation through my rectum. That was about 7 weeks ago. My symptoms of heat have mostly disappeared but if I sit for too long the pain becomes unbearable in the rectum, then travels up through my genitals and then I feel like I have to urinate even if I don't need to go. This has been a terrible ordeal! Do you know if anyone recovers from this without surgery(maybe just over time?). I have seen a urologist, proctologist and finally will see a neurologist this week. Thanks for listening.-Alan
Alan
Posts: 62
Joined: Sun May 22, 2011 11:44 pm

Re: Hi, all. Need some help.

Post by Alan »

I think that I relate to your story more than most. However, I have had this condition for only about seven weeks, but feels like an eternity. I have been in pain since putting too much pressure on my body from pulling springs on my daughter's trampoline(while setting it up). I have had a burning pain in the rectum, and frequent urination with an annoying sensation in the genitals. This condition is horrible. My wife has been supportive as she has been with me when I had an MRI, catscan, ultrasound....but of course doctor's can find nothing wrong. My blood tests and urine tests are all normal, but feels like I have a urinary tract infection. This week I am going to see a neurologist. I had a chiropractor tell me once that nerves can grow back but, only about one mm a day. Do you know of anyone who has recoverd from this without surgery? Thank you and take care.-Alan
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Violet M
Posts: 6778
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Hi, all. Need some help.

Post by Violet M »

Alan, there are quite a few good physical therapists in California. You may want to go to one of them for an evaluation. Check out the list of PT's on our homepage. http://pudendalhope.org/node/63
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Hi, all. Need some help.

Post by donstore »

That's how it was for me. Four years ago, I was ejaculating, felt a sharp pain and my life changed forever (frequent urination, sitting pain, post-ejaculatory pain). Why this happens to a few people and none of the rest, nobody really knows. Cyclists seem particularly susceptible but millions cycle with no problems. Maybe a few unlucky folks are anatomically predisposed to this problem. They say Dr. Potter has the eyes to interpret MRI images that others cannot. I'll find out next week. This problem is not very common so most medical professionals have not given it a lot of thought. You have to seek out the few who have and hope for the best. The pain can really wear you out physically and mentally. Don't hesitate to agressively seek out medications that will help you contol it.

Best Wishes.

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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