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Cyclist Diagnosed with PNE

Discussion in 'General Discussion Subforum' started by Pratik Rao, Oct 26, 2019.

  1. Pratik Rao

    Pratik Rao New Member

    Hi,

    I am a 28 year old guy living in India who got diagnosed with PNE due to heavy weightlifting for 4 years (never had a single complaint during this time). This was followed by 3 months of cycling which would lead to occasional numbness and abnormal temperature sensations in the genital area (jan 2017) and so I stopped cycling. Visited a urologist, he said everything is fine and found an accidental varicocele and asked to get a semen analysis just for safety. I gave the semen and felt some mild discomfort after ejaculation. The next day all hell broke loose and I had severe knife like stabbing pain in the penis and ejaculations were painful. Tried visiting many doctors and ofcourse they were clueless about it. Then by the end of 2017, the pain moved to the testicular area and I met a urologist who decided to operate on the varicocele and do a cystoscopy to check for prostatitis. That's when things went from bad to worse and post surgery, I could not sit without having severe pain in my genitals. The idiot urologist gave me anti biotics and alpha blockers although I had not sign of infection and urine flow was fine. I then met a pain physician who administered a pudendal nerve block which failed miserably. Slowly the symptoms deteriorated and even though I tried rejoining work i had to quit and sit at home. I got a high resolution MR Neurography done which confirmed inflammation of the pudendal nerve in the alcock canal and also confirmed thickening of the ligaments that innervate the nerve. I then met a physiotherapist and she diagnosed me with SI joint dysfunction. Have been on the routine for 3 months now and things are going from bad to worse. I now have penis pain which gets aggravated by walking and standing on one place. Testicular pain that gets aggravated by sitting. Painful ejaculation followed by severe pain flares atleast 2 to 3 days post ejaculation. Cant benf forward without testicular pain. Need to sleep with legs folded since straight stretched legs while lying down cause groin, testicular and penile pain.

    Now here is the interesting part, a short while ago before the symptoms hit I was in a bad place emotionally (2016). My acholohic father was hospitalised and taking care of him made life miserable. My long time fiance confessed to cheating on me. I also had a fistula surgery around this time and developed severe fear of disease when I saw my father in the hospital and later me in the hospital for a fistula surgery. I was always been an anxious person and short tempered. Extremely focus and over dedicated at work sometime sitting for 14 to 15 hours at a stretch. I have always received the highest promotions and appraisals and biggest projects st work but it never caused any problems. Yes I used to be very angry in case I did not get the results I desired. From a family background, I have very abusive parents. An alcoholic father who destroyed everything and a mother who pretty much does not even care for me. I live with my grandmother. Yes I have patched up with my fiance as I love her very much and in the past 3 years she has taken care of me delicately and made up from the mistakes she had done.

    My question is, is this a manifestation of TMS or a real case of PNE given my history of cycling and weight lifting and findings in the MRN ?

    My life is pretty much destroyed. I am a fearless person since I have also been a professional rock climber and snake catcher, so playing with life threatening situations isn't new to me. I am really hurt that my parents dont even ask about me. I miss my job, cycling and rock climbing and my gym.

    I also considered ending my life since many doctors have disrespected me saying that I was mental (doctors in India are very insensitive toward people).

    What should I do ?

    Any help will be greatly appreciated.

    Best,
    Pratik
     
  2. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Pratik,

    I'm so sorry for all you are going through. PNE is classic TMS. Dr. Sarno has pretty much debunked the idea of nerve entrapment. It's obvious that you experienced a lot of trauma and you are a high achiever...the perfect storm for TMS. Have you read any of Dr. Sarno's books? I'm sure you will get better once you have the knowledge and start practicing to shifting your thoughts to the psychological.

    MiffyBunny
     
  3. Pratik Rao

    Pratik Rao New Member

    Hi Miffybunny,

    Yes I have read Healing Back Pain and The Mindbody Prescription by Dr Sarno. I know that I have a very real possibility of TMS, but honestly I am confused. Prior to my discovery of TMS, I was a member of another forum called Pudendalhope and found it to be a very scary site but did hear of some success stories from PNE decompression surgeries and physical therapy. I also met a few cyclists on the forum who told me that cycling was the primary reason for PNE. Plus the imaging scans are adding to the fear since they show nerve inflammation and thickening of ligaments which I was told was the most common reason behind PNE.

    With regards to unprocessed repressed emotions, I am not able to understand how do i deal with a very abusive home environment?

    Thanks for help and guidance.

    Yours,
    Pratik
     
  4. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Pratik,

    The first thing you must do is stop visiting any and all forums or sites about PNE. All they will do is fuel your fear, conjure up imagery that become false beliefs and reinforce your doubts that you may have something "broken". You have to realize that even if other people suffering, have certain ideas and fears...that doesn't make it true. These are people who are mired in their own pain and fear so it becomes totally counter productive to healing. Another thing you have to understand is that just because something can be seen on an MRI, does not mean that is the source of your pain. There are many structural things that happen to women after childbirth for example (myself included), that can be seen on an MRI, but that doesn't mean they are in pain . I had bone marrow edema in every toe from my TMS but it was still TMS. So you have to forget about all that because it's just creating images in your head that have no bearing on reality. There is no correlation between "a thickened ligament" and pain for example. Dr. Sarno often referred to these notions as "fantasy" and let's face it, Dr. Sarno was surgeon...he saw it all!

    So now that we have thrown those sites out the window, so to speak, there are 2 main areas you need to be focusing on. The first is the emotional and how you are repressing emotions on a day to day basis, as well as what chronic thoughts you are having on a day to day basis. You will need to become aware of these thought patterns and how you are handling the emotions that arise from these thoughts. The second area is more practical. What changes can you make in your day to day life that will reduce stress and support your well being? Everyone's situation is unique so you will need to figure out what changes you can make. I''ll give you an example from my life. My younger son is severely autistic. That will never change and I will be his caretaker until I die. At a certain point however, I made the decision to get help and also have a life. This has reduced my stress and enabled me to be less burnt out as a mom. You are going to need to figure out practical strategies in your day to day...to reduce stress and to find joy. If your environment is abusive or toxic, that is a big issue and something you will need to address in a drastic way.

    This is a process, so the best advice I can give is to be patient with yourself and not put any pressure on yourself to "do" things but rather to start becoming aware of your thoughts and emotions. There are structured programs you can follow (the SEP on the wiki) and there is always therapy which is extremely beneficial.

    Right now the most important thing is that you are going in the right direction towards healing.

    MiffyBunny
     
  5. Pratik Rao

    Pratik Rao New Member

    Hi Miffybunny,

    Thank you for your detailed reply and for your kind words. Means a lot !

    To think of it, I would like to share a few peculiar incidences with you where I have experienced loss of pain multiple times. My fiance's neighbours are also our very good friends and they have recently given birth to a baby boy. He is about a year old and he is really attached to me and vice versa. I do spend my free time with the baby and he doesnt like to go to anybody (not even his parents) when I am with him. We share a very special bond. I notice that even time I spend time with the child, my pain simply vanishes. Ofcourse, when I come back home the pain returns. This incidence is what first gave me a doubt that my pain might actually not be real. I mean, how can one go from severe debilitating pelvic pain to no pain in less that 15 mins (when I am with the child), and how come the pain comes back immediately when I come back home ?

    I am trying to figure out why this is happening ? Ofcourse the logical explanation that comes to my mind is that the baby really makes me feel special and I really love him a lot.

    Thanks once again for your guidance and I will started with SEPs ASAP.

    Yours,
    Pratik
     
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  6. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Pratik,

    Your example of your experience of being pain free when you were spending time with the baby is illustrative of the fact that you have TMS and your pain is indeed stemming from psychology and emotions (mind body pain). As you know, the mind and body are one. When you were spending time with the baby, whether it was for 10 minutes or an hour or whatever...., You had transcended yourself in a sense. You most likely lost all sense of the time and your environment and your body...kind of like when you are watching a really great movie or get engrossed in a book. You were in the present moment just like that baby was. Babies are exceptionally good at living in the moment because that is all they know. They haven't had time to form negative thought patterns and bad habits. They aren't depressed about the past (maybe they miss the womb a little lol) and they aren't worrying about the future. They are simply there, in the now. When we transcend our pain and suffering, it's a kind of alchemy that happens. The awesome thing is that this proof you are capable...it's just a matter of patience and practice. Over time you will notice less and less periods of pain until one day you don't even care anymore and you realize you are pain free. Over time you will gain confidence and keep a little "evidence notebook" or sheet of paper of aha moments that make you realize it's just TMS. Just as you have created this pain, you can also uncreate it. It just takes some patience and not worrying about your body...just living your life. The hard part is really looking at your life and doing the work there. Once your brain knows that you can handle your emotions and your life in a sense, the TMS ceases to have a purpose. It fades out and becomes extinguished.

    So you just had a big "aha" moment...and you will continue to have these little epiphanies when you least expect it...when you are truly living your life (the way you were with that baby). You are on the right path and that should give you tremendous satisfaction!

    MiffyBunny
     
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  7. Pratik Rao

    Pratik Rao New Member

    Hi Miffybunny,

    It's been sometime I have spoken to you and anyone else on the forum and so I thought its time to give you guys an update and also discuss a few things.

    I am pretty confident about the TMS approach now cause my symptoms keep changing. For example, there was a time when sitting was really really difficult, now it's the exactly the opposite, I can sit for a respectable amount of time but lying down causes a lot of muscle spasms and genital pain. I do some yoga to relax the mind and muscles but I do tend to tense up again.

    My question is, how do I deal with the symptoms when a severe pain flare kicks in ? I tend to literally cry during such times and even tramadol and steroids dont help.

    Yours,
    Pratik
     
  8. Josh Howard

    Josh Howard New Member

    Pratik,

    It is very brave of you to share your story and from your posts it sounds like you have a classic case of TMS. I battle with different ailments on a regular basis and every time I have a flare up I immediately think there is something physically wrong me. No matter how many times I go through this, it inevitably takes we a week, two, or even a month to realize that I am repressing some emotion or focusing on the wrong thing.

    Yoga and meditation have helped but I find it best to reach out to people that have been good influence on my life that I may have lost contact with. I am currently battling with mysterious knee pain ( that the doctor said is nothing to worry about, mild inflammation) and what I usually do is reach out to someone (family member or long lost friend) through email or text and at times will tell them what they have meant to me. I have a tendency to close up emotionally, so this allows me to at least open the door to having real conversation with people and knock down a lot of the walls that I have built. Sometimes it's not finding out what exactly is bothering you (emotionally or mentally) rather finding an outlet that allows us to share with others or feel good about ourselves. Volunteering or donating (if possible) has been a saving grace for me as well.

    Keep up the fight and best with your journey. Keep fighting.

    -Josh
     
    Pratik Rao likes this.
  9. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Pratik, Everything you describe is textbook TMS. To answer your question, the goal is to become totally INDIFFERENT to your pain (not to "fight through it" or "ignore it" or curse at it's existence ). When the pain flares you have to consistently remind yourself that there is nothing actually wrong with you. You are not broken and the TMS is not this outside force that is terrorizing you. It is actually your own brain trying to distract you from what it thinks are scary emotions. The key is to communicate to your brain (and the TMS strategy) that you have no problem handling emotions, that "you've got this", that it doesn't need to keep sending you pain signals. Over time, with patience and persistence, the TMS ceases to have a purpose. When you are actually living you life in an authentic way, the TMS fades out. Use the mantra "shift". Shift your focus from the physical to the psychological/emotional. The more you do this, the more it changes your brain and chronic negative thought patterns get replaced with new ones. You have to change your state of being from a resistant one to an allowing/accepting one.

    MiffyBunny
     
    Pratik Rao likes this.
  10. Pratik Rao

    Pratik Rao New Member

    Hi All,

    Thank you so much for your prompt reverts ! This what I love the most about the TMS community! People are always loving and offer help no matter how many times one asks for it.

    You are absolutely right Josh! Talking to people helps.

    I also wanted to share a small success story with you guys ! I read your messages, felt very inspired and confident and happy right from my bones to my soul and went for a walk ! I walked for 2.5 kms straight without any genital pain whatsoever ! Normally I cant even climb down the stairs and go to the supermarket (which is 5 mins from my house) without crying in pain ! But today I walked for 2.5 kms ! I am so happy and I owe the success to you guys ! After 3 years I have walked around the favourite lake behind my house and it was amazing !

    Thank you !
    You Guys Are the best ! Stay in touch and god bless !

    Yours,
    Pratik
     
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  11. miffybunny

    miffybunny Beloved Grand Eagle

    That is fantastic Pratik! I'm so happy to hear that and thanks for sharing!! Now you have PROOF that this is TMS and this is how it works. Next time you feel pain, you will remember this walk and you will remember that there is actually nothing wrong with you. You won't be intimidated anymore when the pain does rear its ugly head. You will simply remind yourself to become aware of what your thoughts and emotions were that day. Then you will go about your day as always, paying no mind to the pain because you know it's just coming from you. Anything we create, we can uncreate. Just as our pain is temporary, so are our THOUGHTS.
     
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  12. Pratik Rao

    Pratik Rao New Member

    I have oke doubt which i know is very difficult to answer, let alone tackle but nonetheless let me take the plunge and ask it.

    How should one cope with an abusive family environment? Especially the presence of an abusive father and mother ? There is no direct physical abuse but a lot of mental and emotional abuse. This is also hampering my progress and giving me emotional setbacks
     
  13. Pratik Rao

    Pratik Rao New Member

    Hi Miffybunny,

    Another update. I have thrown away all the steroids, muscle relaxants and anti depressants.

    And the good news, I am actually feeling slightly better without those awful drugs. They made me feel sick, slow and sleepy all the time. I am much more fresh and active now.

    I have also progressed to reduce my urinary frequency significantly! All thanks to the support and guidance of the TMS community.

    Also, I would be waiting to know your take on how to deal with tricky situations especially in a abusive family environment.

    Yours,
    Pratik
     
  14. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Pratik,

    I'm so happy to hear you are feeling better and more clear headed and most importantly, in a better mood! I'm sorry to hear you environment is so toxic and abusive. That is something that definitely needs to be addressed and needs to change. I don't know if it is possible for you to move out? If not, are there social services that can come to the house and offer help, therapy and resources for you and your family? You will need intervention from others.
     
    Pratik Rao likes this.
  15. Pratik Rao

    Pratik Rao New Member

    Hi Miffybunny,

    Updates -

    1. Pain while sitting and pain while walking gone completely

    2. Night time urination gone completely

    3. Pain while standing and lying down very severe (clearly TMS - cause it has increased like crazy)

    4. Pain during ejaculation while sleeping at night - gone completely

    Struggling with a few migraine issues ! But doing positive ! All thanks you !

    You are god for me !

    Best,
    Pratik
     
  16. sb_flyer

    sb_flyer New Member

    Pratik, really great to hear. Have you been practicing anything particular or have you just bought into TMS and that's been enough to start you down a better path?
     
  17. Pratik Rao

    Pratik Rao New Member

    Hi SB Flyer,

    The most important thing is to believe in the diagnosis from your heart and remove fear.

    I had been exploring TMS for sometime time but found it difficult to accept the diagnosis. Encouragement from Vladan and Miffybunny have paved my path to success. Ofcourse, I had already started experiencing pain free moments when I spent time with my finances neighbour's baby. Miffybunny explained to me why I was experience those moments to freedom. I also built my confidence to stop all physical therapy and medications.

    I'm very far away for the word cure, but this is a start. Slow and steady will win the race. Ofcourse the support and love shown the community and their guidance is the most important thing that matters to me.

    Yours,
    Pratik
     
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  18. miffybunny

    miffybunny Beloved Grand Eagle

    Stay the course Pratik! You are doing amazing!!
     
  19. Vladan

    Vladan Peer Supporter

    You are almost there,right around courner,that many years in pain,after implementing few things your pain is almost gone,thats all you need to see,final step is to forget about it and believe in urself,mot the "TMS" in yourself. Awesome news,this warms my heart :)
     
  20. Pratik Rao

    Pratik Rao New Member

    Thanks vladan

    It's really funny how TMS works. Sitting and walking are so much better but standing and lying even for a single second is miserable. I know it is TMS and hopefully I can beat these 2 symptoms as well in the coming months
     
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