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Pudendal Neuralgia!

Discussion in 'General Discussion Subforum' started by kindle123, Jul 21, 2018.

  1. kindle123

    kindle123 Peer Supporter

    This is my first time posting over here ( hopefully im doing it at the right place). Its a little overwhelming. I am a 34 year old female, who just a month ago started with a sharp shooting clitoral pain,this was accompanied with urgency, iv had nights where i just had to stay in the restroom. In 2016 i had a back surgery ( herniated disc) which was successful and then while i was 2 moths into recovery i was rare ended. Since then i have had constant lower back pain which i kept on ignoring thinking with time it will go away, doctors told me becuase of the accident my ligaments have moved and thus the pain.
    Today i saw a doctor for my clitoral pain and i have never ever felt this hopless in life his diagnosis was of “pudendal neuralgia” and he told me the goal is to bring the pain level down to 3. He just made it sound that this is something i have to live with. Please anyone with any insight? I have read Dr Sarnos book, but dont know where i stand with my car accident and back surgery history.
    Thank you.
  2. untangledweb

    untangledweb Peer Supporter

    You poor thing! I’ve never even heard of of this before. It sure sounds like TMS. Until you get emotional aspects of your life under control, you might want to consider Lyrica or something else to help with the nerve pain.
    You wouldn’t have happened to have been molested when you were little? Or just begun a new intimate relationship?
    It seems like a weird emotional connection for such specific pain.
    You can message me if you’d be more comfortable.
    HattieNC likes this.
  3. Kathryn858

    Kathryn858 New Member

    Hi Kindle123,

    I have had all these symptoms you write about (mine too started with clitoral burning and lower back pain/sciatica). Turned out to all be TMS. I too was terrified at one point that I had pudendal neuralgia - but no totally 100% TMS. If you have any questions you would like to ask about my experience, please do.

    My best wishes to you.
    HattieNC and untangledweb like this.
  4. kindle123

    kindle123 Peer Supporter

    Hello Untangledweb;

    Thank you for your reply. I saw a specialist yesterday and he confirmed I had Pudendal neuralgia. No I have not been molested as a child and I am not in any intimate relationship. My fiancé lives in Australia and the last I saw him was in January. Right now my primary care doctor has put me on steroids and muscle relaxers. The specialist yesterday took all or any hope from me and just told me that I will just have to have pain management for the rest of my life.
  5. Dorado

    Dorado Beloved Grand Eagle

    Don't let the specialist take any hope away from you. I had a pain psychologist say the same exact thing to me, and he was dead wrong. I should've never listened to him. And you know what? I went from researching how to get on disability due to severe pain keeping me from being able to touch or grip any object to having no pain. I'm not even on any medications anymore.

    Seriously, he was dead wrong.

    I've said this to other members on the forum: The pain will only be there for the rest of someone's life if they believe that to be so. We create our own realities every single day. If one does not work on their emotions and fear of the symptoms, their symptoms will continue; if one does work on their emotions and fear, it is literally guaranteed that their symptoms will go away. Many of these "doctors" and other "professionals" are blinded by an inaccurate medical framework that has been heavily influenced by pharmaceutical companies as well as misled souls who mistakenly believe they're being empirical yet lack knowledge of the mind-body connection.

    Forget them. They do not know what they are talking about at all.

    Patients both with and without TMS (which means nothing more than symptoms derived from emotions; it is not a medical condition) have managed to beat their pain, including those with: chronic low-back pain from nerve injury and inflammatory damage, diabetic neuropathy, some cancer pain, abdominal pain, neck degeneration pain, amputation, trauma to the brain and spinal cord, pelvic floor pain, inflammatory bowel, irritable bowel, bladder pain, arthritis, lupus, trigeminal neuralgia, multiple sclerosis pain, post-infectious pain, nerve injuries, neuropathic pain, some central pain, phantom limb pain, degenerative disc disease, pain from failed back surgery, pain from nerve root injury, and MUCH more.

    Source: https://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies)

    You sound afraid of your symptoms. That's normal and we've all been there, but don't let that fear win. Get back to living life fully without them distracting you. And forget about the past injury and surgery - plenty of people have been there and recovered.
    Last edited: Jul 23, 2018
    HattieNC and plum like this.
  6. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Dear Kindle,

    This is a BS diagnosis. Please do not let it sink in and feel hopeless. You do not have to live with this. It will go away. You don't need therapies or any of it.
    I had it, as well. I don't anymore. It was how I discovered TMS.
    Sometimes I will get a reaction, again, when I'm stressed. But, it will go away when I deal with the emotions of it all.

    Read my posts about it on the success story forum. There are other women who have fully recovered.
    Abigail Steadley has a very interesting story and history of this. She's about your age. Google her name.

    Your nerves in that area are not that delicate. Women carry 10 pound babies and push them out of their bodies. If our nerves were that delicate, wouldn't you think that every woman who had given birth would be in chronic pain?

    Also, look at Nicole Ferber Sachs videos on YouTube.

    You are going to be well. Let your nervous system relax. Put your hand over your heart and say to yourself: "I am safe. I can let my nervous system relax. My body knows how to heal. All is well. Thank you."
  7. untangledweb

    untangledweb Peer Supporter

    Please take anything that a doctor tells you with a grain of salt. The majority of us here at this site, are here because someone told us something and we believed them. Somehow we were structurally damaged, or somehow the wires are crossed. It simply isn’t true. With trigeminal neuralgia, it’s the nerves in your face that are messed up. I thought I was doomed with that diagnosis forever. I’m not. I’ve been weaning off Lyrica, instead of taking more. It’s really amazing what our minds can do. Our minds into creating these pains and also for getting rid of them. Do not give up hope. You’re surrounded here by people who did not take their doctors word as gospel. I didn’t and I’m so glad I didn’t.
    HattieNC and plum like this.
  8. kindle123

    kindle123 Peer Supporter

    Thank you so so much for your reply and encouragement, i just went to your success story and read everything. I have more confidence now, I think as I am so new too TMS the acceptance part is what is a challenge, did you actually get your TMS diagnosis confirmed? Once again thank you for taking the time to reply.
  9. kindle123

    kindle123 Peer Supporter

    Dear Caulfield,

    Thank you so much for your reply and the article. I was amazed to find the neuroplasticty maps and how many people have benefited from them. As of last night whenever I feel pain is going to start I try to imagine the brain and where it is lightning up. Too early to say if it’s working but I am trying my best. Thank you for the encouraging words.
    HattieNC likes this.
  10. sheltered

    sheltered Peer Supporter

    Kindle123, I haven't been on this forum for a long time but I had an alert for a conversation started from another member and it lead me to your post. The dreaded "Pudendal Neuralgia" term has lost a lot of its power over me but I still don't go looking for it either! I was dealing with Chronic Pelvic Pain Syndrome, or at least that is the made-up term they group Pudendal nerve irritation symptoms. I'm 100% better now. It took a while and required me to rewire how I saw the entire world and myself as well. Meditation and mindfulness was important for my recovery. And of course, the theory of TMS. God bless, Sarno!

    The fact that TMS is located in lower back and pelvis, I suggest not focusing on location and why it is placed there. I was driving myself crazy a bit with trying to figure out why there and in the end it doesn't matter. I don't believe TMS is that specific. It's just looking for a home. Maybe your subconscious has some connection to the pain and why it placed it there. Maybe you are worried about having kids/not having kids/having more kids/etc. Its a riddle that may not have an answer. It's a holistic thing. I can't remember where I heard the quote "you can't think yourself out of a problem you thought your way into. Maybe it was Alan Watts. Anyway, your issue is not in the back or pelvis. Read Dr. Sarno. Read books on Spiritual awakenings. Read. Exercise. Live. You have all the tools you need yourself. Have faith in that.

    Just to reiterate comments above, I was told a bunch of damaging things that impeded recovery by well meaning medical professionals. They are not all bad and there is a growing recognition on psychosomatic symptoms. You already have a number of second opinions on this message board but if your subconscious needs someone in a white coat, perhaps look for another "professional" opinion. The problem is, a lot of the specialists out there are already so invested in the system that they have a blindspot. I think the common thread with recovery is faith. You gotta believe it or it won't work. No other way. It takes courage but start looking for small flaws in the way your TMS is operating. Just from your first post, maybe not a coincidence you had pain in back that seemed to recover (perhaps placebo) and then reoccurred and moved to pelvis area. Find patterns. Think outside the physical.

    I wish you good luck with your recovery.
    HattieNC likes this.
  11. kindle123

    kindle123 Peer Supporter

    Hello Sheltered,

    Thank you so very much for your post it was extremely encouraging to read that you 100% symptoms free. I can’t thank you enough for bringing up the point of having or not having kids. I just turned 34years and hopefully getting married this year, I had a back surgery when I was 32 so beginning of this year when I was with a physical therapist who was still working on my residual surgical scar restrictions, I asked her how would my back be once I get pregnant? And she just looked at me in horror and said with that back and your weak core I think it’s a horrible idea to even get pregnant. Considering her experience and her knowledge I thought maybe that’s how it will be and Just didn’t try to think about it much, because even after the back surgery and then the car accident I just felt my back was gone anyways.
    But now I feel because I never delt with that emotion of being told you shouldn’t have kids was probably taken out on my pelvis. I feel really sad because I have waited 14years to be with the love of my life and now these weird symptoms keep coming up. I am doing the structured education program and trying to gather as much knowledge on TMS as I can.
    Once again thank you for your post.
    sheltered likes this.
  12. Lizzy

    Lizzy Well known member

    Just a word about a pregnancy. I was told by a doctor, when I was a teenager, that I would have troubles with my back during pregnancy and as I got older. My back was fine during my pregnancies and ever after. Do your emotional exploring, but turn your back on worries about physical things.

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