Health Organization for Pudendal Education

Obviously, none here can really know. I guess I am just desperate for some answers as no doctor can tell me what Is going on.

I´ve been struggling with pelvic pain for 6 years. Luckily, the pain comes and goes, and I’ve had periods where I have no pain at all, but the constat tightness in my rectum is always there. Recently though, I’ve had a major pain flare up

I think it is because I went to a physical therapist who put me on a Kegel exercise routine (stupid idea I know). Besides this, I did deep breathing exercises to relieve my tight pelvic floor. Now the curious thing is that I believe this deep breathing exercises has been the major source of my flare up. Why? Because whenever I achieve a certain level of relaxation with deep breathing, I experience a sharp knife-like feeling in my rectum. I talked to my therapist about it and she believed that it was muscle related and she said that sometimes it gets worse before it gets better. So, I basically continued my Kegel and deep breathing routine. I am now way worse than I was before I started therapy, and it’s been two months.

When I asked her about pudendal neuralgia, she was basically clueless.

The reason why I believe its pudendal neuralgia is due to the other symptoms I have. These are:
- pain with sitting. Sore feeling in the perineurium
- The pain is lessened when sitting on a toilet seat or a doughnut pillow
- I am basically symptom free in the morning, but the pain increases throughout the day
- muscles spasms of the pelvic floor after bowel movement (sometimes)
- pain after ejaculation (sometimes)
- ejaculation when doing lower abs exercises
- pelvic spasms when lying flat on my back, but they subside after a while.
- Stabbing, shooting pain in the rectum.
- penile pain

I do have vague memory that these symptoms started years ago when I used an object to play with my prostate. As a young boy I didn’t really know what I was doing. Could I potentially have damaged my pudendal nerve this way? If so, what does this mean for my prognosis?
I am thinking about visiting Sayer Pelvic Pain Clinics in London, but I don’t really see how you can do physical therapy on a person who lives abroad. I would guess that I requires weekly visits.

Do you guys think I have pudendal neuralgia?

All thoughts deeply appreciated

Welcome Future,
Sorry you're suffering for so long. You certainly have some PN related symptoms. You may want to compare you list to the symptoms list in the home page. You also may want to see a PN knowledgeable physical therapist, a list is on the home page.
Janet

hey Janet,

thank you for responding. I am thinking about visiting Sayer Pelvic Pain Clinics in London, which is mentioned on the physical therapist section here at pudendalhope. I am just wondering if physical therapy is even possible to undertake while living in a different country? I would assume that therapy requires weekly visits.

Also, can pudendal cause a constant ache in the rectum? that does not seem like a normal PN symptom. Maybe my pudendal nerve is triggering my Lavator any muscle, or vise versa.

Yes I would say therapy is usually weekly. My pain has mostly been rectal and prior to PN I had levator Ani muscle spasms, not sure if one causes the other.
Janet

How are you doing regarding PN now?

HI EVERYONE

PLEASE PLEASE PLEASE GIVE ME YOUR FEEDBACK IF I SHOULD HAVE PUDENDAL NERVE DECOMPRESSION SURGERY?????? I AM THINKING ABOUT THAT OR CRYOABLATION OF THE PUDENDAL NERVE...... I CAN NOT SIT IN A MOVIE THEATER GO ON LONG DRIVES IT DRIVES ME CRAZY... HOWEVER I DO NOT WANT TO MAKE THIS WORSE I AM LEANING TOWARDS DOING CRYOABLATION OF THE PUDENDAL NERVE

BEST WISHES TO EVERYBODY AND GOD BLESS YOU ALL AND I HOPE NOBODY HAS TO SUFFER....

Hi Future,
I am actually doing pretty good with PN lately just in a flare at the moment. After PNE surgery I got a little better. I moved in 2017 to upstate NY and then had to get rediagnosed with PN, they had me go to multiple doctors, MRIs of head, neck, etc. My regular doctor took me off tramadol but left me on oxycodone. After that I went to the pedorthist (orthotics expert) and along with PT and personal trainer am finally do well enough to taper off oxycodone. Only part way there, still taking a full pill at night alternating with half pill the other nights. I will still need to watch my activity, use cushions to sit but I can do more than I have since surgery. I am also on gabapentin 2700mg a day and using a muscle relaxer usually twice a day before activity. I am retired so I can take it at a slower pace but glad to be able to do more. I had foot pain but that has mostly gone away and it seems the orthotics worked for that and the PN. Still gaining strength of my core and trying to get my body to use the correct muscles instead of pelvic floor. PT is also loosening up the obdurators and working back or other issues. I have been lucky to fall into the right place. I wish that was the case for everyone.
Janet