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Pelvic pain, scared of the pain!

Discussion in 'General Discussion Subforum' started by NicoleB34, Jul 13, 2017.

  1. NicoleB34

    NicoleB34 Well known member

    Hi there. first thread, a little history. I've had pelvic floor dysfunction and mild interstitial cystitis (came on after frequent bladder infections) since i was a late teenager. I had a long remission, lasting years (pelvic floor continued to be tender, as did bladder upon palpitation, had some urinary burn and painful intercourse, but pain level was at a constant 1-2, and i managed) and i've always had anxiety and insomnia and other hypochondriac mysterious health ailments that i would work myself up about, then they'd mysteriously go away. I believe now they were TMS.

    Anyway, my terrible bladder pain returned in 2015 during some relationship stress, as a vicious flare lasting a year. The pain specialist seemed to confuse my pelvic floor dysfunction pain with possible pudendal neuralgia, and suggested a nerve block. I should have said no...it was the biggest mistake of my life to get that block. I went ahead with it, and the block badly irritated my pudendal nerve, and i ended up with pudendal neuralgia from the shot!!! PN is hell on earth. Worse than all my other ailments. Suddenly i felt disabled whereas before, i was just in bad pain, but i could DO things.

    I should say, it probably wasnt just the shot. You see, i was an avid cyclist. The mountain biking never bothered my pelvic pain before the shot, in fact, i always felt BETTER on the bike. I believe it was because i was livng in the moment while biking, rather than stewing in the past, or obsessing about the future. Well after that nerve block, i hastily jumped back on a bike and did a 25 mile race and my crotch started hurting really bad. My pain doctor assured me the nerve would calm down. I would take small breaks from the bike, then cautiously get back on the saddle, and boom, crotch pain. Maybe i should have waited longer for the nerve to chill out....but then pain then became permanent. Do you think it was my deathly fear that "i'll never bike again" that made the pudendal pain permanent?

    So here are my clues that this is TMS:
    1. the pain moves all around the nerve, from sacrum, to dorsal tip

    2. after the nerve block, pain jumped right from the bladder, to the pudendal nerve! (well, maybe there was a month overlap, but how do you explain that? i stopped obsessing about the bladder, because there was a new enemy in my body, this PN was ruining my love in life, mounting biking)

    3. sometimes when im distracted and very involved with say, housecleaning, i'll suddenly realize i barely feel pain at all. and if i think about it too much, the pain comes back.

    4. i only had crotch pain at first, but when the pudendal doctor told me "stop doing all things (fun) that might hurt the nerve for 3 months, and see if it calms down. that means biking, sex, etc," At that point, the diagnosis became "real". Next day, i had sitting pain and rectal pain too, whereas i didnt before.

    5. in those 3 months of feeling depressed and basically not moving, i got worse. So i said screw this, and got a special saddle, and started riding again. I took baby steps, but i went from not being able to sit on a bike, to riding 2 miles.....then for a while 5 miles (before the burning set in and i had to turn around). Then i learned about TMS and i decided to tell myself "stop having this ritual of fear surrounding riding. Pretend it's like the old days, and just ride with your friends!" now i'm up to 10-15 miles, sometimes pain free. I did this just by changing my fear response. Before, i used to have this fear before and after rides, like i've probably damaged myself, so i'd freak out, get my TENS machine, pop pills, lay down, take baths, and cross my fingers. I dont do that anymore, and i've tripled my miles. I still get temporary pain, but i always go back to baseline.

    Here are my hesitations though. I rarely feel pain DURING an activity. I flare after. Usually 6-24 hours after. (usually a day later). TMS experts will tell you to get out there, fight thru the pain and not fear it. But how do you do that when the pain comes a day later? I feel like i AM following the directions, but then i get a huge flareup afterwards, and i cant tell if it's the nerve itself, or the pelvic floor spasming up. Yes, i still see my pelvic PT. She actually believes in TMS and urges me to go with it, but she also believes in tight pelvic floors because she literally feels the knots and tightness and breaks them up. i have a new knot every week near my pudendal nerve, usually after a big weekend of biking. I do believe in TMS...but something is still causing me to tighten and create giant trigger points/knots a day later and be in serious pain. My brain? Am i fearing a delayed flare, so that it happens? The weird thing is, even though i have tripled my miles per ride, i still cant ride more than once a week or i get horrible PGAD (painful arousal in the genitals, one of the most dreaded pudendal symptoms). You might say "your fear of riding more than once is causing the flare" but usually i ride more than once because i'm feeling good, so i ride extra, and i'm smiling and i'm happy and i feel whole again, and then BAM.

    The more i read, the more i'm certain this is TMS. i'm not so much afraid of structural causes, or "nerve damage", i think i have enough clues that it's not that. I fear the TMS pain itself and how much it affects my social life, my biking life, my sex life and how much it ruins everything. Anyone who's ever had pelvic pain knows how it's a special kind of hideous. So if you can stop fearing structural cause, how can you stop fearing the awfulness of TMS pain coming, as you try to live your life?
    Bodhigirl likes this.
  2. FredAmir

    FredAmir Well known member

    Hi Nicole,

    Welcome to TMSwiki!

    As long as you fear the pain, it will be with you.

    How can you stop fearing it?

    Keep reminding yourself that TMS pain is just reduction of blood flow: very painful but harmless.

    When I first read Healing Back Pain I had sciatica in both legs and pain in my back, neck, shoulders, knees, eyes and more. I was scared of becoming paralyzed if I did any slight thing that could worsen my sciatica.

    Once I realized it was just reduction of blood flow, my fear vanished and was replaced with determination to ignore and push against my sciatica and the rest of my pain. Minute by minute, hour by hour I ignored and pushed back until I could walk without my leg locking up and could go up a flight of stairs.

    So put on your fighting glives on and go at it in a slow but steady plan until you win.
    Vouthon likes this.
  3. NicoleB34

    NicoleB34 Well known member

    i guess part of it is extreme sadness too, i want to be a mountain biker. Nothing else. I know i could just take walks because that doesnt irritate the nerve. All my doctors (except the PT, she understands) tell me NO MORE BIKING! when it comes to PN. Cycling is the worst thing you can do for PN. Yet, while i'm not a lazy person, i pretty much hate all other exercise. i just want my bike life back! If this is TMS, then surely i should be able to get it back? I'm trying. i'm doing it. Yet sometimes, i pay very dearly for it.
  4. FredAmir

    FredAmir Well known member

    Been through that stage and the best solution is to get excited about riding a mountain bike rather than approaching it with fear and anxiety.

    Start with a simple plan of sitting a few minutes on the bike and then gradually doing more day after day until you are there.

    Just baby steps at first until you get there.
    c90danwaiel likes this.
  5. CarboNeVo

    CarboNeVo Well known member

    seriously the first thing you have to do is calm down, everybody freaks the hell out when hears about PN, the diagnosis used to scare me more than cancer.
    describing your symptoms I can tell you, you have NO PN, nothing like that :D , you just had the nerve irritated by the shot and if the doc had not told you about PN or you didnt read about it, you would have forgotten about it already.
    Now that your mind is attached to it, the brain keeps activating the pain signals and you need just to calm them down and that is primarily by not giving a dusty fuck about PN, PNE or all other bullshit those idiot docs told us. Definitely block the PNE site in your firewall it's extremely toxic.
    Contact C90danwaiel or Ezer, they beat it. I beat it too, simply by not thinking about it, removing it from my life.
    Just return back to biking and keep at it.. it will help you neutralize the fear around the stupid fictive diagnose.
    Best of luck ;)
    Vouthon likes this.
  6. NicoleB34

    NicoleB34 Well known member

    yesterday i was fighting a flare, and i rode anyway. i tried to be excited, though, in the back of my mind, i guess i knew i was flaring. a few hours after the ride, the dreaded painful arousal feeling started setting in and i was in agony. today i'm still suffering badly.
    I havent heard of many TMS'ers having delayed pain, it's usually immediate pain during an activity. Mine is delayed like how your muscles hurt a day after intense activity.
  7. NicoleB34

    NicoleB34 Well known member

    oh i stopped those awful forums long ago. it seemed like there was NEVER a success story. Just misery. The only success stories i've ever seen surrounding PN has been these TMS stories. It just sucks that i'm sitting here in agony because i rode my bike, and i "thought" i was doing a good thing by telling the nerve to go screw off, but i also knew deep down "crap, i'm flaring, this might be a bad idea". i'm trying my best to ignore, not fear, and kick this fear habit for good. I believe in TMS, but i think i fear the pain and impact it has on my life, more than the idea that it's structural. Like, "what if i cant ride like i used to?" or "what if my boyfriend leaves me, or i cant ever find a real relationship because of sex pain? " oddly enough, i've had vulvodynia since as long as i can remember. i remember being sensitive down there even as a kid, so i wonder what happened to start that up.
  8. FredAmir

    FredAmir Well known member

    Hi Nicole,

    Delayed nasty pain is a hallmark of TMS. Delayed exercised muscle pain feels good.

    As I said slow steady progress not suddenly going for a ride. You can read how I did it in Rapid Recovery from Back and Neck Pain or if you prefer message me and I will subscribe you to a podcast by the same title, which will help you design your Rapid Recovery plan step by step.

    If you go too fast, you can create more pain and scare yourself, which is what happened here. You need to build your confidence first in the diagnosis and your ability to conquer TMS.
    DaveBrad likes this.
  9. NicoleB34

    NicoleB34 Well known member

    thanks. i feel like i'm going fairly slow, only once a week for 1.5 years now. i've bumped my miles per ride, and i want to ride at least twice a week now but the nerve wont let me. It seems like a good idea to let a painful flair die down before jumping on a bike again, but i guess i have confusion because by "waiting for a flare to resolve" i feel like i'm giving into the idea that the nerve is broken and needs to heal. That's why i got on the bike yesteday despite the fact that i was flaring from a ride days before. I'm paying for this very dearly today. I somehow thought i was accepting a TMS diagnosis by riding during a flare because the flare itself was not a nerve problem, but a brain problem.
  10. ezer

    ezer Well known member

    I had delayed flare-ups after exercising. Usually a day later. In retrospect it made no sense and there was no explanation.
    Many people report similar delayed reaction on pudendal sites. The only explanation I got from the pudendal "experts" was that nerves are "weird".
    NicoleB34 likes this.
  11. Ellen

    Ellen Beloved Grand Eagle

    I also had delayed pain and extreme fatigue when I had fibromyalgia. I think they call it post-exertional malaise. I could do anything physically, but the next day I'd feel like I had been run over by a truck. It's a very difficult symptom, but I believe pretty common to TMS.
    Lily Rose likes this.
  12. Chizzy

    Chizzy Peer Supporter

    I have a question, I did 100 crunches today for the first time in 2 years. I actually lift weights a lot and run miles regularly. Something about the crunches triggered my unconscious and I started feeling my pelvic floor to sting mildly in my pain area (groin/ testicle). I know that crunches and sit-ups aren't ideal for any type of pelvic floor dysfunction but I'm trying to remind myself the really all I have is TMS ( I really am healthy as an ox, built like a brick). Do you have any advice on this? My pain scale right now is very low, maybe I'm a 2. I wasn't even in pain today when I started working out, and then while I was doing my crunches I kept worrying about my pelvis reacting to it. I'm not even really in any discomfort right now, but I keep thinking that maybe the crunches were going to hurt me.
  13. Chizzy

    Chizzy Peer Supporter

    PN and PNE is TMS so even if you have those so called symptoms its just TMS. PN AND PNE doctors make S!@# up as they go.... My meeting with Dr. Sheldon Jordan confirmed this for me. You can feel any type of pain anywhere in your body if you believe something is wrong with you.
  14. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, Nicole. You want to return to biking. You can, if you believe in TMS and journal to discover your repressed emotions. If you haven't yet read Steve Ozanich's book, The Great Pain Deception, I believe it could help you to bike again, and after a while, despite some pain, bike pain-free. Ozanich writes how he overcame multiple physical pains by continuing to play golf, despite the pain. When he discovered the anger he was repressing, because of a doctor's medical malpractice that nearly killed his wife, he not only played golf again with no pain, all his other pains went away.
  15. NicoleB34

    NicoleB34 Well known member

    yup I did read that book :) i guess the only difference between he and I while exercising, is that he often felt pain immediately during activity and fought thru it, whereas i feel it a day later, so often times i 'overdo" my activity because i feel mostly ok doing it the day of. I get tricked into thinking i'm ok while doing what i love, and then pay for it later.

    Admittedly i have a bad feeling that much of my pain is due to the relationship i'm in. We love eachother so much, but we have an age difference and probably want different futures (and in some ways, since he is the younger one, he has commitment issues, feels he wants to be polyamorous, but doesnt want to lose me, so he struggles too on what to do). It sucks when you have an insane bond with somebody, but you feel as though the destruction of your relationship is looming. Neither of us want to break up, but i think we know there's a glaring problem with where we are in our lives. I dont want somebody to tell me "you will never heal unless yo leave this bozo." I dont want that. I want to know i can get better and still be with him. If we break up in time...well then, so be it. But my constant worry about our probable combustion at some point (i've never loved anyone more, it's crushing. when you're in pain, you grasp at anything that makes you happy, and NO i will not just go openly dating if i lose him, while still in this amount of pain.) also, trust issues as well, are what i believe brought on this TMS flare.
  16. FredAmir

    FredAmir Well known member

    It takes more than simply pushing against the pain. You have to have the right mindset. If you ride your bike and have no pain, that means your body is whole. When you feel pain the next day, stop thinking physical, think psychological!

    What was going through your mind few minutes or few hours prior to feeling the pain again. Was it the relationship issue? Was it some other worry? If you make that connection between your thoughts and your symptoms, you will recover faster. Just know that if you can ride your bike and feel practically no pain, you are physically fine.
  17. FredAmir

    FredAmir Well known member

    Same thing Ezer. If you have no pain while you exercise, it means you are physically fine. Monitor your thoughts and see how they affect your body. That is the real source of your delayed pain.
  18. FredAmir

    FredAmir Well known member

    Besides TMS, your extreme fatigue could be due to a number of factors: insufficient caloric intake, digestion issues causing malabsorption of nutrients, magnesium deficiency, low vitamin B12 levels, etc. See my blog post on B12 deficiency. Everyone should be tested for this as some of the symptoms are similar to TMS.

    http://www.fredamir.com/single-post/2016/11/12/Could-It-Be-B12-Numbness-Nerve-Pain-Autism-Tremors-Depression-Dementia-and-more (Back Pain)
    Last edited: Jul 14, 2017
  19. Chizzy

    Chizzy Peer Supporter

    Can't you have TMS pain when you exercise too if you're thinking about the pain popping up during an exercise? When I exercise and play sports my pain Fades away and disappears, unless I'm focused on it like I was this morning when I was doing 100 crunches.
  20. FredAmir

    FredAmir Well known member

    Of course, you can! That's the beauty of Dr. Sarno's discovery. It covers all situation, because the subconscious mind can reduce blood flow at any time: before, during, and after exercise. Here's a paragraph from the FAQ section of my book that may help in such situations:

    "Q: So how do I know whether my back pain is due to an injury or is from tension?

    A: If any of the following conditions exist, you probably have TMS:

    1. The pain persists or recurs or both, despite rest and various treatments.

    2. The pain has no clear cause or can be attributed only to a physical incident that happened a while back, such as lifting an object two weeks earlier.

    3. The pain is attributed to a routine activity, such as driving, sitting too long, mowing the lawn, or playing golf.

    4. The pain pattern matches TMS: You hurt or have more pain at night, first thing in the morning, or on weekends. The pain moves around from your back to your leg or your shoulder. You should also watch for pain that comes long after an activity or at the end of the workday.[1]

    5. The pain is sharp, not the dull muscle ache you get from too much work or exercise.

    6. Numbness is intermittent. It gets better or worse and moves around.

    7. There is no change in color or swelling in the “injured” area. Our bodies are made to respond immediately to a serious injury. Can you see an actual swelling or change in color in the injured area? If not, the pain could very well be TMS.

    Since my recovery I have been injured several times while sparring in my karate class or in other incidents, and I have found that two or three days of rest is about what I need to recover from the initial injury. After that I test my ability to walk or work and push back against the pain until I have recovered completely. I remember once, two weeks after I had recovered from being kicked in the arms repeatedly during sparring, I woke one night in pain. I could not determine why, but I knew it had to be due to either tension or conditioning. I quickly eliminated the pain and went back to sleep."

    So if it is the same exercise routine as always and no significant increase in your workout, it is most likely TMS.

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