Health Organization for Pudendal Education

Hello, Andy,
I am 35. I had to go back to my doctor for a 2 month follow up since my hip surgery. That's why I didn't reply yet. It's a six hour drive and it flared my symptoms up big time. This really sucks now. It is killing me now as I try to write this. I am sloped back trying to avoid the sitting position as much as possible. I had a hard fall on my hip and that is how this nightmare started for me. I had surgery and got my hip fixed and my doctor is hoping that it will fix my nerves symptoms as well but so far it has not and of course these are the worst symptoms out of all. It drives me crazy too. I have some of the symptoms you have talked about in your post too. I will be getting a block next within the month. Does the nerve block Hurt? I have been hurting for a long time, completely lost my life, independent life, girlfriend, everything for the time being. I am extremely depressed and suicidal. Every day I ask myself how will I make it just 1 more day? What if this is how it is now forever? I want my old life back damnit!! So you think that you are improving still? What surgery did you have and how bad was it? It sucks to be this age or any age and have these symptoms. I tell myself if I would have gotten this when I was 70 or so it would still be horrible but I could accept it I guess because I would have gotten to live my life at least but not in my 30's hell no!

Hi Frank. I will answer you fully on your welcome post. That way, more members will see & can hopefully offer some help.

I have been getting a few mellow days of pain & symptoms in recent weeks. Noticeable days that are different in a positive way over the nightmarish norm of the past few years. Its nothing in the realm of a fix, but its been 'nice'. I am still unable to do much physical activity & the obvious frustration remains. This positive change is subtle, but welcome. However, in a few months, it will be two years since my pudendal nerve decompression surgery. I was told by my doctors that nerves can take up to two years to heal & as mine are nowhere near healed, I am faced with the reality of this situation being permanent. Until now, I have tried my best to bury my head in the sand & hide behind the "two year" recovery period & hope. As I draw nearer to the end of that period, I will have to come to terms with my life being irreversibly changed. I have no idea how I am going to do that & that scares the hell out of me...

Andy,

I understand hanging onto the hope of change until a certain date - I did that for a while after several procedures, most recently after cryo. I do believe that it is possible that your pain generator was not an entrapment of the nerve, but something else that may still be found, and you may get some relief going forward. There are also some new drugs and products in the FDA pipeline that may be years away, but still may be able to restore significant quality of life to people with severe nerve pain at some point. I tell myself that there are reasons to be hopeful even if it doesn't always seem like it. I am glad you have seen some subtle positive changes lately. Hang in there.

Sincerely,
Stephanies

Andy, you still have some options. I have been hearing good things about amniotic stem cell injections for people who have failed other therapies. I don't know if they are available in the UK. Anyway, I hope your mellow days continue.

Violet

Thank you for your words ladies. I had not heard of amnionic stem cell injections, but will raise the question at my pain clinic appointment early May.

Andy, I understand from what you've written that you were diagnosed with PNE at Bristol and that nearly two years after an operation there you are still experiencing very significant pain, which prevents you from working and other everyday activities. I see that some people have suggested that all is not lost and that other therapies may well help in the future, and some therapies have been specified.
After seven years of pain myself I have come to question the diagnosis and treatments I have received for my diagnosed Pudendal Neuralgia. While I do have pain in some of the distribution areas of the nerve, I am now unsure exactly what the cause of the pain is. I have been told , vaguely, that the nerve is probably irritated, but no-one has explained how. Like you, I've had some periods when the pain was a lot better, and at one time it was so improved that I nearly booked a train journey for a holiday to somewhere two hundred miles away-something I couldn't contemplate now. Like many other people, I've found that Valium significantly reduces the pain, to the extent that I can do things like take a car journey of one hour or sit for longer periods of time. Again, no-one has been able to explain why, except for a vague suggestion that it relaxes the muscles. When a consultant mentioned to me that Valium also has a psychological effect, I felt annoyed and hurt at even the very indirect idea that there was something psychological involved. Now however, after much reading on the topic, I've come to understand that pain is very common in psychosomatic disorders. I've read what you wrote to Ezer about how your symptoms include not only pain, but also changes in the temperature of your skin/body and that you are 100% convinced that you do not have a mind/body or psychosomatic illness.
I have thought back to what was going on in my life in the months before my pain started and can see that although I didn't fully know it at the time, I was under a lot of stress, for a number of reasons. I've now decided that it's very likely that I have a mind/body disorder. I have completely got over any shame regarding this and now feel very optimistic that there is a way out of the pain. People consider many treatments with zero evidence for their efficacy so why not consider and investigate something else like this? Reading Suzanne O'Sullivan's book would make anyone think twice, I believe.
"if you want to keep a secret you must also hide it from yourself. " George Orwell 1984

As with other conversations regarding the same subject, I have read & digested its content. I am happy for you that you have found something that is working for you & I wish you good luck for your future. It is all a very long, slow & individual process of elimination.

Something bad has happened. I felt a horrid pain in my perineum last week while stretching & my situation has deteriorated by the day.

Andy, I’m so sorry. This is such a horrid problem, and it often feels like there’s no way to avoid moving the wrong way unless we lie still all day. So, this is a new pain that you haven't had before? Or, just a pain you haven't felt since the surgery? Have you called the doctor?

Best,
April