Health Organization for Pudendal Education

Hi Andy,
I am so sorry you have gone through so much in the last three years. This condition is very difficult, but there is help and it can get better with the right treatment. As everyone has said, the conservative route is best to start with......which I know is hard when you are in so much pain. You just want the pain to stop and you want your life back. This best advice I can give is to try and find doctors who are knowledgable about PN issues....sounds like you have a good start on that. Also, the right pain medication. This is a great resource center for help and encouragement when you are down. They helped me a lot when I was at my lowest and felt like I would never get my life back........but a year after surgery......I am slowly getting my life back. It is slow, but I am off my couch and doing things again.

Prof. Aszmann did my surgery. He is a wonderful doctor and a skilled surgeon. He treats many men with PN isssues because of all the cyclist in Austria. He can also help you if he thinks you shouldn't do surgery. He listened to me and decided on a different surgery than I thought I was getting. I flew from the US so it was a LONG flight, but I made it and I am glad now.

I wish you the best of luck. This is a long journey, but there are people here who want to help. Don't give up!!

Best,
Barb

Thank you Barb. I am hoping for hope again... I am normally naturally a positive person who has been described by my ex as a "happy go lucky cheeky chappy", but somewhere along the way I lost that... I want to find that again...

Hi Andy,

Some people do feel that their pain is due to emotional stress and I believe that may be true for them. However, in my case, the pain is not at all related to emotions. I can be under a lot of stress or very relaxed and have little or no pain. My pain is directly related to activity levels and whether I avoid physical activities that flare up the pain -- things that are jarring to the pelvis such as jogging, lifting heavy items, etc.

Anyway, I wish you all the best in the treatments you pursue. I don't know the best places to go in the UK but hopefully the UK members will continue to give you ideas on that.

Take care,

Violet

Andy,
You said you think your pain is physical and I respect that. You may be absolutely right. Just remember that there is absolutely no way to tell the difference. The only sign is some variation in pain every once in a while (that you seem to experience) that appears pretty random but usually attached to a strong distraction.

Violet,
It is not simply stress. Pain often starts during the combination of a stressful period and an accident. Once the pain is chronic, stress has not much influence anymore. What changes the pain at that point are strong emotions (both positive and negative) but not stress. An emotion attached to a trip, an illness, a distraction, a visit, a dispute etc... will make the pain fluctuate. Pain is pain though. There is absolutely no way to tell the origin (emotional or physical). Nerves inform the brain and the brain decides to interpret the information as pain ..or not.

I was absolutely convinced for 10 long years that my pain was 100% physical and yet...

I today spoke 2 hours to a NYU trained neurologist and pain doctor that is also convinced that almost all cases of chronic pain are emotional. She said that it is not something she can openly discuss with patients and only shares with people that seem open to the possibility (and not offended by the idea).
She says that all the PTSD patients she knows have chronic pain.

Stress will have a factor, due to tightening of muscles, etc, but mine flares up most after physical activity. I will investigate all avenues over the upcoming years though...

Andy,
Stress does not give you pain. Let me try to be more specific. I am not diagnosing you. It is just FYI.

-You said that you are a really happy and fun guy. This means that you are repressing your negativity. It is completely unconscious. Chronic pain often happens to overly "nice people".

-Stress does not give you pain. It lowers your pain threshold however. That allows for your chronic pain cycle to start after any physical incident.

The combination of repressing your negativity for a lifetime then stress and physical incident creates the perfect storm.
In any case, pain is real. The nerves are inflamed. Your muscles spasm etc. Physical activity will make you worse. It made me worse.

The key word is unconscious. It is an unconscious process. 95% of your brain is not directly accessible to you. It regulates your temperature. It regulates your blood flow, and 1000s of other processes. And yes, it decides if you are going to experience pain.

I am grateful for your input

ezer wrote:Violet,
It is not simply stress. Pain often starts during the combination of a stressful period and an accident. Once the pain is chronic, stress has not much influence anymore. What changes the pain at that point are strong emotions (both positive and negative) but not stress. An emotion attached to a trip, an illness, a distraction, a visit, a dispute etc... will make the pain fluctuate. Pain is pain though. There is absolutely no way to tell the origin (emotional or physical). Nerves inform the brain and the brain decides to interpret the information as pain ..or not.

Well, I can't quite wrap my mind around this concept. Strong emotions(positive or negative)have never, ever affected my pain levels. I can see how a pain pathway could become somewhat permanent in the brain and so I do see a mind-body connection but in my own experience, the 'strong emotions affecting pain' theory just doesn't fit the description of what I've experienced.

OK, so you say the emotions were repressed and I wasn't conscious of them. If repressed emotions are what caused my pain for 2 years, why aren't they still causing pain? The only thing I did differently was have surgery and lower my activity levels.

Violet

Strong emotions(positive or negative)have never, ever affected my pain levels.

I was not referring to you Violet, but to your claim that "Some people do feel that their pain is due to emotional stress and I believe that may be true for them". I just wanted to make clear that it is repressed negative emotions, not simply stress. There is a big difference. If you think it is stress that brings chronic pain in some individuals then meditate and relax and you will feel better. That does not work.
In any case, it looks like your pain was physical and surgery was successful. I never disputed that anywhere in my post. I am not diagnosing you or anybody else on this site. I feel it may be helpful to point to some telltale signs that are indicative of mindbody syndromes when I recognize them like for the OP.

OK, so you say the emotions were repressed and I wasn't conscious of them. If repressed emotions are what caused my pain for 2 years, why aren't they still causing pain? The only thing I did differently was have surgery and lower my activity levels.

Again, I was not referring to your case at all.
But can you explain why is KrisG pain free? He was diagnosed twice with PNE and did not have the surgery. He should still be in pain by that same logic.
Also why am I pain free if negative emotions are just psychobabble?

Ezer

Do you know if this works in women at all - i am going to try it. There was a programme on here in the UK recently that said women experience more chronic pain than men.

http://www.bbc.co.uk/news/science-environment-29405467

Thank you
Rosemary