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.

10 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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    1. Yes I did!! I ended up getting multiple rounds of it, because i had to take nsaids and it messed up the second injection. Otherwise- might have only taken once. It was one of the easiest things I did!

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  3. Carrie Ann Eison

    Hello Amy. I enjoyed reading about your short cuts as I have a sister next door with 7 kids!! The laundry, shoes and socks are a nightmare! Also keeping them all fed!! I use to help her alot as I am more organized. I’ve been down for two years with obturator neuralgia from failed bladder mesh. It has been so painful!! The steroids help some but make me diabetic and cause mental crazies! I wish I had more pain options! I’m in Arkansas and have a wonderful pain Dr that has listened to me and diagnosed the injury! That you for sharing and your lovely article! You are an inspiration to me!! You give me hope to keep fighting for treatment and a better day!!!

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    1. Oh my gosh, I am SO sorry to hear that! Have you ever tried Botox into the obturator? It worked for me. I have a dear friend who had the same injury and is still struggling. Hang in there! Mesh is just awful. And yes, steroids make me cranky too:) God bless you and thank you for writing me!

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  4. Debbie Blanton

    Exactly how many amniotic injections and how long take to work. I have a friend who was treated by Dr. Jarnigan 10 days ago and of course is not better yet. Just looking for hope from someone.
    My heart breaks for her especially since all this came up after the death of her husband.
    Thanks-grasping for info!!

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    1. Six weeks! At least. After my first round, I got 8 days of relief, after 6 weeks. It was the first time in a year that I had had a better day. Not good, but better in comparison. Over time, and two more rounds of shots, I improved even more. I also got Botox injections, every 3 months, did PT, and prayed a lot. Prayer and letting go of fear was crucial for me to move on.

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  5. Allie Jett

    Hi! I have just recently been diagnosed with pudendal neuralgia (may 2022). I have had this burning pelvic pain my whole life and they think PN is the reason, I was just born with it. Before September 2020 my pain was sporadic, but not every day. Since September 2020 I’ve burned the same burn intensely every day. It hasn’t stopped. My last procedure was the amniotic allograft by Dr. Jarnigan 4 weeks ago. Will this pain ever go away? I can’t live the rest of my life like this, I’m being tortured everyday.

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