Health Organization for Pudendal Education

Hello everyone. I have been experiencing symptoms of PN since August. I have been a member for a couple of months and am just now gaining enough courage to post. I decided to post because I am unable to figure this out by myself, and I am looking for insight from others.

****SEXUAL CONTENT BELOW******

This is what happened to me. I am 22 years old, and my girlfriend and I have been sexually active for over a year now. She had recently began to stimulate my prostate during sex. Well one day, I decided to use one of her sex toys (Hard no flexible toy) to stimulate my prostate in the shower. After I was done, I immediately had a bowel movement. I was walking back to my bedroom and I got light headed, hot, sweaty, Nausea, generalized stomach pain. I thought this would go away, but it did not. The stomach pain and nausea lasted for 3 weeks. During this time, I had no sex drive, no erections, loss of libido essientally. Then, I started to have shooting pains from my rectum, they would travel along my perineum. These sharps pains eventually turned into a burning/tingle. This feeling made its way to my left testicle, and then my right. Then I noticed I could feel it in my legs. Now, my legs are burning all the way down to my ankles.


My pain is worse while sitting. Especially in my legs. The pain in my legs is a burning, or almost like someone is pouring cold water down my legs. The pain in my testicles is often a tingling or burning, sometimes an ache. More so in my left testicle than in my right. This is also worse while sitting. Initially when this happened, I could not get an erection at all. Now, I am able to get a weak erection. I have burning in my legs (mostly medial thigh) after ejaculation.

I have been to 2 urologsits, Physiatrist, Neurologist, and now a pain specialist. One urologist thinks I have chronic inflammitory prostatitis, ( 2 courses of antibiotics, flomax). Everyone else seems to think it is my pudendal nerve. I had a bilateral pudendal nerve block, and it relieved the burning in my testicles for a couple of hours, but no affect on my legs.

I believe this is a muscular problem compressing nerves in my sacral plexus. I am going to PT this week. I have a phone consult scheduled with Dr. Conway. Does anyone else have anything they would like to add to this picture?


Thank you all.

Hi help,

The surgeons I've talked to consider a reduction in pain after a block an important diagnostic tool, especially if the block was done with imaging so you can be fairly certain that it hit the pudendal nerve. So, I think that finding is highly suggestive of pn. Pain with sitting is also very common with pn. If it seems like it is muscular, then physical therapy may be able to resolve your pain. The physical therapist may also be able to help you diagnose the problem.

April

Hi,

I agree with April that since your had some temporary relief from the pudendal nerve block that you could have some PN involvement but whether that is the primary issue, I'm not sure. Since you have burning in your legs and feet also I think you are smart to consider the sciatic nerve and the lumbosacral plexus. Did any of your doctors say anything initially about possible autonomic nervous system involvement with sweating and nausea, etc.? I think at this point, whatever you can do to get your nervous system calmed down would be a good idea and avoid activities that might cause your nervous system to be over-simulated again. So be careful with the type of PT you pursue because sometimes PT can make you worse if it's not done right. You may also want to read some of Ezer's previous posts on this forum about the mind-body approach if you think there is any component of anxiety to your situation.

Violet

My doctor did not say anything about my autonomic nervous system. I really felt strange during the initial 3 weeks after this happened, I lost 15 pounds because I had no appetite. Then, I developed the PN Symptoms, along with the leg pain. I had much anxiety initially but am feeling better.

Good luck with your visit to Dr. Conway. He has been treating PN for quite awhile so I think you will be able to get some good answers from him. Just research a lot before you make any major decisions. There are a lot of differing views out there. And read what people are reporting about the PN doctors and treatments so you can make educated decisions.

Violet

help_sos wrote: ↑Sun Jan 27, 2019 6:58 pmOne urologist thinks I have chronic inflammitory prostatitis, ( 2 courses of antibiotics, flomax). Everyone else seems to think it is my pudendal nerve. I had a bilateral pudendal nerve block, and it relieved the burning in my testicles for a couple of hours, but no affect on my legs."

Although my origin story is much different than yours, my symptoms are pretty similar to yours. When I first started having problems, my primary care doctor thought I had prostatitis. After putting me on several months of antibiotics, he sent me to a urologist.

While I am not a doctor, I think, in retrospect after 9 years of dealing with this crap, that what the primary care doctor thought was prostatitis is actually piriformis syndrome. The reason I say that is pelvic floor therapy pretty much cured my symptoms, assuming I do not do something to trigger the problem again, minus this place deep in my butt. Like it is so deep I can barley get my dilator there to do pelvic floor therapy. I believe the piriformis muscle is right below a male's prostate.

If you experiment with that hypothesis, please let me know how it goes for you.

Reopening this thread - I suffered from a similar injury and am wondering if you've recovered? What worked, what didn't?

needhelpasap1 wrote: ↑Tue Feb 20, 2024 11:16 pm Reopening this thread - I suffered from a similar injury and am wondering if you've recovered? What worked, what didn't?

I convinced a pain management doctor to try a piriformism nerve block, and it relieved my pain for about a week. Although the piriformism doctor wants me to try botox first, I think I am just going to roll the dice and go for it.

Please let us know how it goes