Pudendal Neuralgia

pudendal

I’m not here to give medical advice, everyone is so different and I think that it can be dangerous to throw out generalized advice. My journey is different from your journey, but I would love to share some resources that I have found. When I started this new phase of life, it was overwhelming trying to find doctors and treatment options. There are a lot of gloom and doom stories on the internet, and fear itself is not helpful. Being diagnosed with a condition that is a blow to your health whether it is cancer, lupus, Lyme disease, diabetes, or neuropathic pain can be scary at first, but it doesn’t have to stay that way.  Living in a state of fear, and catastrophizing the pain is not a good way to live. I have said over and over to myself  “I choose to live in the light.” It is a choice! I read every scary story, lived through a lot of them myself, and every time, I picked myself back up again.

Picking yourself back up after failed treatments, set backs, pain flares and stress, is hard- really hard. However, it’s essential to having a real life. Even if you think you are doing everything “right” in life, complete control is an illusion in my opinion. You might get bad news, and bumps in the road- mental fortitude and for me, faith, is the difference in giving in to the fear, and conquering it.

Ok- pudendal neuralgia or neuropathy- I had never heard of that in my entire life. Most people haven’t! There are multiple causes, and treatment options. One frequent cause is mesh injury of some kind. I’m not going to start on the dangers of mesh, but if you are on the fence and have to undergo surgery of some kind and have the choice- do you homework! That’s all I’ll say:)

 Resources that I found helpful/not harmful (I will leave things off the list that I tried that were harmful):

I am by no means “cured”, and there are many things I have tried, and left off of this list! I have someone else drive me usually, because sitting is difficult. I use a seat cushion when I do need to sit somewhere. I am exploring the mind-body pain connection next, pain psychology and training the mind and central nervous system to work for me, not against. I am in the very early stages of looking into that! So no advice or resources yet.

3 thoughts on “Pudendal Neuralgia

  1. Gaynor

    I have had pudendal neuralgia since April 1999, that is almost 19 years of daily, incredible pain. I have had surgery, a neurostimulator, nerve blocks, neural,therapy, acupuncture, various medications and finally enforced retirement. Now I just live with it, but it is really hard. As it was discovered 8mhad a cancerous polyps in the anorectalmregion in 2001, it was thought (years later) that the polyps May have been pressing on the nerve. I had radiotherapy which fibrosed the nerve so that the nerve would nevertheless heal. I just wish I could have one day of being pain free.

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    1. Where are you located? There are new therapies and treatments coming out regularly- science is catching up to the nervous system, but it’s not there yet. Don’t lose hope that there is healing in the future. I get it- the daily grind. Stay focused on pushing forward!!

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  2. Lauren

    Hi Amy,
    I am a fellow PN sufferer and wanted to get your feedback on the amniotic allograft injections. I saw your blog post about your trip, but wasn’t sure if the injections helped your pain at all? I’m curious about them.
    Thanks,
    Lauren (P.S. – I think we are the same age :))

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