Health Organization for Pudendal Education

One thing that is going to keep me optimistic, is that there's 5000 users on this site, but I bet you there's millions of people dealing with this. So what that tells me is that the majority of people are probably dealing with mild symptoms and are able to cope with day-to-day life. Where is I think a lot of people on this site are in the worst state when it comes to PN and PNE. Just like dr. Jordan told me, majority of people aren't bedridden, they've been poked and prodded by the wrong doctors for years and years and that's why they end up with all of these issues, or there bodies just experienced a traumatic injury. I'm going to remain optimistic and continue on my journey and be grateful that I can still go to work, exercise, have sex, play with my kids, why I search for a cure.

Other PN physicians besides Dr. Jordan have said that nerve blocks are effective in many cases but I haven't seen many of them on this forum. I don't know if it's because the people who do well just don't come here and the ones who are still struggling do.

ChaseJordan92 wrote:What does it mean when your pain is strictly on one side 80% of the time?

According to the Nantes team publication, unilateral pain can be associated with nerve entrapment. My pain was mostly one-sided. But that's not to say you have nerve entrapment if you have one-sided pain. Maybe you just have nerve damage on that side without a nerve entrapment?

I wish there was a way for each person to know if time would help. I've known people who had this for many years and time didn't heal it. It's really an individual choice as to whether you want to pursue treatments or just manage the pain. If you can manage it with non-opioid medication that would be ideal. The problem with opioids is you become tolerant and dependent on them; however, I know one person who has taken suboxone successfully for several years. It contains naloxone so you are less likely to become drug-tolerant. The trick is to find a doctor who knows how to prescribe it properly and is willing to prescribe it.

I think it's important to be positive. Many people do get better and are able to live normal lives -- not necessarily biking again but at least being able to live pain-free. For me, biking and jogging are out of the question but I did a 10 mile mountain hike yesterday with an elevation gain of 2400 feet.

Violet

Hi Violet,

I am celebrating 10 years of sobriety tomorrow so opiates are definitely out for me. So bilateral typically means entrapment? I have been paying very close attention to my symptoms and realize:

1. I am in great shape in the mornings. It typically takes me 45 minutes to get to work and sitting in my truck is what starts my daily flare up.

2. The flare up lasts most of the day after my morning drive and than starts to disappear in the afternoon.

3. Sitting in traffic on the way home flares it up again. This typically lasts until I fall asleep. Except in the shower or bath... my sympotoms resolve immediately when bathing (scratching my head).....?

4. There are weeks where my pain is at a 0 even if I am driving, sitting, etc. This is hard to explain. Any ideas?

Is entrapment worse than PN? Can entrapment resolve its self? I told Dr. Jordan about these stories I was reading on this website and I told him how scared I was that my symptoms were going to get so bad I couldn't get out of bed. He looked me in the eyes and told me that there's no way were going to let that happen. He seemed confident.

Violet, you said you know people who have mild PN or PNE and just deal with it. Is that pretty common with this condition? Is it typically mild? Have you known people whose symptoms gothat better over the years?

ChaseJordan92 wrote: So bilateral typically means entrapment?

No, not according to the Nantes criteria. Unilateral pain can be associated with nerve entrapment.

Predominantly Unilateral Pain
"Perineal pain is particularly suggestive of a pudendal nerve
trunk lesion when it is unilateral (and when it is experienced
in all of the anterior and posterior hemiperineum), but midline
or central pain does not exclude the diagnosis."

http://www.pudendalhope.info/sites/defa ... iteria.pdf

To answer your other questions, yes, I've known people whose symptoms got better just with lifestyle changes or whose symptoms came and went depending on what activities they were doing. For instance I know one person who develops symptoms if they go on a long road trip or if they ride for several hours on a riding lawn mower. If they avoid these things they don't have symptoms. I had mild symptoms for about a year and a half before I developed severe symptoms. My PT had me do a certain kind of stretches that I think pushed me over the edge. She didn't know about pudendal neuralgia. That's why I think it's important to go to a PT who knows what they are doing.

My own theory is that there are many different variables as to why symptoms progress or not -- like whether your ligaments are hardened as you age (like mine are) or what triggers the symptoms in the first place -- such as how much you are exercising and what type of exercise you do. Someone who has a musculoskeletal predisposition to having the nerve damaged who doesn't exercise may never develop symptoms or may have mild symptoms whereas someone else who has the same musculoskeletal predisposition who does exercise heavily may develop severe symptoms.

Can entrapment resolve itself? I'm not sure anyone could answer that question with 100% confidence but theoretically I think it could, depending on the type of entrapment and what caused it. If the space between the ligaments is just a little tight causing pressure on the nerve, and the symptoms are triggered by certain activities, maybe by avoiding those activities, the inflammation in the nerve could heal.

If you just have some nerve irritation from the pelvic floor muscles being tight or tense, if you can learn to relax the muscles, maybe the nerve irritation would subside and the symptoms would go away.

Or if someone has an injury and the pain is intense at first causing the brain to develop pathways that lead to a chronic cycle of pain even after the initial injury has healed, if you can break those pain pathways with something like the mindbody approach, then I think someone could be cured that way.

There's a lot I don't know about pain and about pudendal neuralgia -- this is just my own take on it.

Violet

Could vericose veins be creating this pain? Don't they run up through the pelvic floor? I have pretty big vericose in my right leg. I was going to have them removed a couple years ago but I decided to wait. Could they be putting pressure on my nerves?

What up flare ups? Usually I am 3 weeks with pain and 2 weeks without. Typically a consistent cycle with me.

Depends on what doctor you talk to as to whether varicose veins could cause the type of pain you are experiencing. A pelvic MRI or MRN would probably show if there are significant varicose veins in the pelvic area. On some of the MRN reports I've seen by Dr. Filler he will note that there are enlarged blood vessels near the ischial spine (ligamental grip) that suggest a nerve entrapment because the blood vessels follow the same pathway as the nerve. The theory is that if the blood flow is backed up due to ligament compression that the nerve is likely compressed too. I don't know if surgical results bear out whether this is a legitimate diagnostic tool for nerve entrapment.

The top gyn in my state told me that she sees women with large pelvic varicose veins who have no pain at all. She did not feel varicose veins would be a cause of chronic pelvic pain. On the other hand, there is a publication by Mark Possover (posted in the publication section of this forum) suggesting that varicose veins can put pressure on the pudendal nerve. We've had a number of patients on the forum who posted regarding embolization of enlarged veins but if my memory is correct, these procedures aren't usually successful.

Violet

I did had A2M from Dr Jordan for PN pain. But did not go well. It was given with ultra sound guidance. I would not recommend A2M for PN.