Male Pudendal Nerve Entrapment Diary...

[Violet M]

Andy, I wish you could get in to see a good PT who might be able to help you. In the meantime, try heat and ice or the hot/cold sitz baths to calm things down. Are you already taking opioids?

Violet

[Andy_Pablo]

It is the combination of pains & pulsating sensations I had prior to surgery April. As you say, it feels like you cant move for fear of making something worse.

I will try the heat & cold packs Violet. I think it might be in the process of calming a little today, so hopefully it will settle soon. I am on Tapentadol & Pregabalin.

I have a hospital appointment on Friday, so will speak to them about things, but it just feels like every time I start thinking that I might be able to salvage a fraction of my life, something flares up & puts me right back my pit of shit. Its pretty exhausting.

[Violet M]

Hey Andy,

Exhausting is the right word. And it's like being in a prison of pain. Please be persistent at your upcoming appointment and advocate for yourself as far as getting the treatments you need. You have suffered too long from this. Make a list of some of the possible options you might try at this point and let them know that you are not in a good place right now -- that you need to try something more. I know it's really hard to do that when you are exhausted from pain but you have several days to get your list together and think about what might be the next step for you. Do you get some temporary relief from the tapentadol?

Violet

[April]

It is completely exhausting. I’m able to function okay as long as I have my ice, but I still feel exhausted with trying to cope (and manage my icing). So glad to hear that you’ll see the doctor on Friday. I also think bringing a list of treatment ideas is a good idea. I bring a list of questions and treatment ideas (things I’ve read about on here) to many of my doctor appointments.

April

[Andy_Pablo]

I visited a pain clinic yesterday & the doctor told me that I need to realise that my situation is not going to change dramatically for the better & apart from trying new ways to help me live a more comfortable life, this is it. I am being sent for some physiotherapy, to a psychologist, & they may look at implanting something in my spinal chord to help try & mask the pains, but there is no magic cure & no hope that I will ever have anything like the life I had.

[stephanies]

Andy,

There is a lot of research being done on nerve pain and I believe new and more effective treatments will be coming in the next few years. I am saddened by my condition and still mourning my old life, as we all do, but all it takes is one breakthrough to change everything.

Hang in there,
Stephanies

[mary jane]

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

Sounds a bit like my mystery case...I had really bad nerve pain triggered by something insignificant enough to cause such horrible pain ..occurred before starting university when I had a lot of anxiety and stress... I am also highly responsive to medication, I had 3 pain free years on medication..and was able to have a long time with no medication at all and no pain ...well guess what ? It returned after a bad year filled with anxiety and panic attacks..
My current GP is pointing towards psychosomatic and wants me to see a therapist for my severe anxiety ..I never made the connection before because I honestly thought I had nerve damage ..but I don't see how on earth I can have damaged nerves when I had a normal year and 4 months ... so it must be something else ...
The only reason I can't accept the psychosomatic diagnosis is that the tingling, buzzing, crawling under the skin sensations are horrible and unbearable ...
I have started doing mindfulness and my amitriptyline is working again ..so I am lucky I suppose ..but I don't have an answer and I studied statistics and economics in University so I really need a logical explanation for all of this I do have some symptoms that are like PN but I don't accept that diagnosis because my bladder and bowels are fine despite the nerves being "unhappy"
I know central sensitization is a possible explanation but my pain moves around a lot and comes and goes so I don't think I have that either

[Violet M]

Mary Jane, I can think of 3 explanations but I don't know if either one is correct in your case. When you become anxious you tend to tighten up your muscles and the tight muscles can impinge on the nerves. Another possibility is that your nerves were irritated for some reason -- mild injury maybe, and they healed, but your brain is used to the pain signals and it's easy for the signals from your muscles and nerves to just keep taking that same path. A third explanation might be that when you are stressed out the chemicals released by your body at the synapses of the nerves might be irritating, or it may cause you to lack the chemicals at the nerve synapses that would make you feel good. That's just a layperson's explanation. But this explanation could explain why amitriptyline helps because it alters the chemicals around the nerve synapses. http://www.medscape.org/viewarticle/413110_3 It's one reason why positive thinking is so powerful -- there is actually a scientific explanation for it. But all of the positive thinking in the world will not correct a mechanical issue where a hardened sclerosed ligament it sawing on a nerve. So I think it's really important to get a proper diagnosis and explore all of the different possibilities of why might be going on. For you, it sounds like stress/anxiety is a reasonable explanation for what is going on if other possible causes have been ruled out.

Violet

[mary jane]

Thank you, Violet

[Andy_Pablo]

Had a really shit day yesterday. Ridiculous pains that reduced me to tears. Took a few sleeping tablets & managed to sleep for over sixteen hours. Woke up earlier & had the best day for a long time. It was still there, but not so intense. Has been nice.