Men with Pudendal Nerve Issues

[RobertVerde]

Any men out there with PN problems?

[Gardener47]

Yep. Its driving me nuts. Started with a diagosis of Prostatitis. After investigation (MRI, Cytoscopy) moved to PN. Seen Pain Clinic at Wythenshaw (De Mello).

Things that are helping are:

Yoga and a daily routine of 20 minutes yoga pevic area stretching

Accupuncture (electro variety)

Distraction - I play violin and can get compeletely immersed in this.

Awareness - going for a lie down when it gets bad.

Been going on now for 14 months - browsing this site that is not unusual.

Try to keep happy.

[clancemandoo in reply to Gardener47]

Mine started a long time ago and has varied in intensity throughout the years, sometimes awful and then extended periods of relative calm. What I recently started doing is something called DCT, Dynamic Contraction Technique. You can google it. It's a form of stretching called eccentric stretching which is putting a load on the muscle while stretching it. It has helped me considerably but it does take commitment and dedication. In the beginning I found it pretty difficult to stick with it but now it's just part of my routine.

It comes from the perspective that the muscles surrounding the nerves are in spasm and compressing the nerve, once released the nerve can function normally. It has lessened my pain to the point that it's not controlling my every move. I still have sitting issues and use a cushion when I drive but I used to not be able to sit for more than 5 minutes. May not be for everyone but this is just my experience. Good luck, I know how life changing this condition is but there is hope.

[egoose]

Yes, there are a few of us us out here. Three years and still dealing with it. Be aware that after you educate yourself about PN problems, you will know more about it than some doctors that you see. Find a good physio therapist who specializes in PN problems.

Find a good cushion that works for you and like Gardener 47, focus on your hobbies (Yoga is amazing) and other things important in your life. Praying helps and find a good cushion that works for you. Be strong and don't let the anxiety control you (meditation helps with this) and like Gardener 47 says be happy

[RobertVerde in reply to egoose]

I think we are all doing what's necessary to cope. I did find a doc at the Cleveland Clinic that specializes in this for men - Daniel Shoskes - flew from LA to see him - worth the trip - I also had a session with his top PT person who showed me what I need to do when I had an episode. Like we all do - stretching helps but the most important things to do are self manipulation and relax your mind so you do not mentally let the episode take over your thoughts.

[RobertVerde]

I have come to the conclusion that almost no Urologists have any idea on this condition - after visits with 4 or 5 in the area I received the same diagnosis - prostatitis - was then given a weeks worth of Cipro - the worst of then all. I finally gave the last doc a copy of "A Headache in the Pelvis" and he understood and actually thanked me. Its good to have a place like this to connect!

[Merc7582]

After 14 months, Dr and urologists still saying Prostatitis, I firmly believe its PN. Comes and goes, maximum relief each time about 5 days. Agree with you guys staying focused on other things helps. Awaiting cytoscopy which i would say will show nothing. Hard with people around you as cause Drs do not understand this it makes you feel like you are a hypochondriac.

Would be interested to hear what you guys worse symptoms are if anyone feels they can post them.

[RobertVerde in reply to Merc7582]

Docs have no idea about this - I went through 3 or 4 that thought it was in my head. Finally found a doc in Cleveland - Daniel Shoskes - who specializes in this stuff. Not the best beside manner but very helpful. PT is the way to go and limit act ivies that work your abs - I was a swimmer - but I swim no more. I have mentioned this before - read the book mentioned in the thread below - gives you perspective. "A Headache in the Pelvis" - don't give up - you will be able to control it but it takes work.

[Chase50]

Been dealing with pn for 6 years. Tried two runs at pt three years apart and neither worked, but that doesn't mean it won't work for others. Amitriptyline seems to be working very well for me, but still have pain. Just got in a terrible car crash a few weeks ago so now I get to add upper back pain (thoracic fractures and cracked ribs that should heal in a few months) to my daily aches and pains! I have a question for you guys - do you have a type A personality like me? I have heard that a lot of people who do seem more prone to nerve issues like ours.

I have a hard time relaxing because of it, and so I'm probably missing out on some of the pain relief you guys are getting.

[RobertVerde in reply to Chase50]

Definitely type A here - mine was caused by over activity and then a fall that triggered it. I would try PT again - find a better one - has to be at least weekly with you doing manipulations yourself as necessary - did you read "A Headache in the Pelvis" - with respect to drugs Lyrica has worked best for me - I have mostly normal days now with rare flare ups - its always there but controlled. You learn new techniques for muscle management in the pelvic region.

[PatientRN]

My husband has been having sever pelvic pain for 2 years and was diagnosed with interstitial cystitis and prostatitis years before that (which we now know was all related to his nerve pain). He has even gone through a hemorrhoidectomy in hopes that would “cure” his pain. Opioids do not help, he is seeking a new pelvic floor physical therapist but is scheduled to have a series of bilateral pudendal nerve bocks starting on 2/4 at the University of Washington in Seattle. I will let you know the outcome of these procedures. He has been an avid cyclist all his life and has all the symptoms of a pudendal nerve issue.

My husband is an engineer and although he is in excruciating pain (and on disability) will not seek any yoga, mindfulness, relaxation, “therapy”. He refuses to believe that this is muscle related.

Please listen to all the advice given here on this site. Try everything you can and become a strong advocate for yourself. I am an RN and believe in all modalities of treatment to relieve this evil pain, physicians are very uneducated when dealing with pelvic pain.

My very best wishes to you...I will keep you posted of his progress and our next steps..