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Pelvic pain, scared of the pain!

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

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  1. Click#7

    Click#7 Well known member

    I had the surgery after the TMS diagnosis. I was stupid. The surgeon was very convincing and I wanted a quick fix like many others. Yes I had surgical pain, but that has gone away and what is left is what I had prior to the surgery. The pain after hasn't changed. I still have back, hip and foot pain. I have been going on with my normal physical activities and doing more. I can sit longer . The last 2 weeks of journaling, talking to myself (subconscious mind) etc as suggested I seem to be doing better. I have one good day, then suffer for one or two. I have really started to embrace the TMS diagnosis like I should have. There is no other option. I have no neurological issues like numbness, tingling or weakness. All my reflexes are normal. I can walk on my heals and toes. My post op MRI's look great, no stenosis, no bulging or herniated discs, no arachnoiditis etc. It's just pain. And last but not least I went thru this before twice in my life (once after a pregnancy) and once during a very stressful period in the life and it (pain & other symptoms) went away. At that time the MRIs showed nothing and the pain went away. This time I am older & yes the MRI showed everything from herniated discs all over the place to severe spinal stenosis, facet disease with aging what Sarno called the grey hairs of the spine I guess. That was scary. The surgeon said if I didn't have surgery I was looking at nerve damage ? Like I said the current MRI looks great according to them. I was told that Sarno worked with a lot of people who had prior back surgery ?
     
  2. NicoleB34

    NicoleB34 Well known member

    [QUOTE="Click#7, post: 85990, Too bad Steve O. couldn't jump into this discussion because are you riding that bike "like PT" as you are seeing a physical therapist, or are you riding because it is part of your normal physical routine ? Ask yourself why you cycle too...might be part of your issues. Just food for thought as I am just a new member.[/QUOTE]
    I was a really hard-core rider for about six years before all of this. Before that I just sort of existed, was mildly overweight, didn't really have any hobbies that I was good at. Mountain biking brought me out of my shell, drastically increased my confidence, and it just felt like it was what I was made to do. I developed a whole new group of friends in the cycling community and I feel like it was such a positive thing to happen to me. To have this ripped away from me has gutted me because I have not been close to finding a hobby that keeps me in shape but also helps me have fun and I can be out in the woods, also I get to see all my friends go out without me. I also fear boredom because I don't watch TV, and I literally have nothing to do. I do think a piece of it goes back to that relationship because we both rode together and that's how we bonded and I am also afraid of him finding somebody else because I'm not the girl I once was, but crazy adventurous rider. I'm desperately clawing to get this back.
     
    Last edited: Jul 16, 2017
  3. FredAmir

    FredAmir Well known member

    Firstly, never put a label on yourself, like, "I was stupid." We all do stupid things. All of us. That does not mean we are stupid. Believe it or not, labels like that lead to self-directed anger and rage, which lead to TMS.

    It is so easy to be manipulated by doctors when you are a patient. Whenever possible have an informed advocate with you.

    Just FYI, this is what American College of Physicians has to say about spinal abnormalities.

    http://www.fredamir.com/single-post/2016/07/22/American-College-of-Physicians-Spinal-Abnormalities-Are-Normal (Back Pain)

    You are making progress with journaling and self-talk and that is good. Just continue with that and hopefully that all you need to fully recover.
     
  4. hodini

    hodini Peer Supporter

    Hi Chizzy,
    Nice! at the beach getting slammed by 5-6 footers, wish I was there! I don't now if you are talking about surfing or body surfing, if it is surfing , when you pop up, turn etc a lot of stress is put on the pelvic area.

    I have been doing a lot of reading on this site and am now 2/3rds of the way through Dr Sarnos on healing back pain, initially, have been skeptical about TMS and its practitioners claims however well meaning. I have not seen or read anything to dissuade me from that view at this point.

    However, with regard to the last line of your post, I just wanted to let you know that I too have had exactly that same experience! While some may point to that as being evidence of TMS, fortunately for myself, I understand it as a product of human suggestibility, attention and influence, nothing odd about it.

    It just goes to show, that even when one is not a "believer" one can become subject to things beyond their conscious belief system. Problems can arise when others use those "feelings" that occur to give simplistic "well if 1+1=2, and 2
    +2 =4 then surely x+y= whatever. That is one of my main issues with a definitive TMS diagnosis.

    That said, for those interested, I will speak of my own pelvic experience.

    Over 5 years ago, after a long tennis match, I slid into a split (which I had never been close to being able to do) No doubt about it, I injured myself. I rested until the pain was 70% gone and tried to play again, it did not hurt while playing, but within 2-6 hrs afterwards it would be debilitating for a few days. I repeated this behavior over the next several years, because I, like Tennis Tom, just have a love of the sport and camaraderie. I had been to doctors to try and find out what the issue might be, had the x-rays, scans, the only thing my doctor remarked about was the lack of any formation of arthritis in my hips which he said he had not seen in anyone my age. (that's a good thing!).

    Over all this time, I was constantly reminded through sensations, particularly when doing certain simple movements, i.e.; getting out of a car, making a turn while walking or beginning to dart across the street. I call these sensations, because I want to refrain from the word pain, which if I use it it would mean that the sensation evoked a wince.

    I was determined to get back to tennis, however was concerned about the layoff that I had had and my own propensity (which I see is shared by many here) to see myself as the invincible athlete. I allowed my more rational mind to kick in and began to educate myself on the mechanics of the pelvic girdle, the musculature, ligaments and surrounding tissues, the paths of the nervous system through these muscles and tissues. Not only did this help in my ability to visualize how my movements actually work on my skeletal framework but also given the complexity, centrality, interactions and conflicting views on treatment to the area, I also understood that at present this is an area that involves quite a bit of ambiguity.

    Becoming more comfortable with the ambiguity is one of the more difficult things for most people. Hence, why when one is given a simplistic answer to a complex issue, ones mind has a tendency to attach itself to the answer because dealing with the ambiguity can be draining. So, I accepted the ambiguity and decided to go at it like any other problem that has ambiguities as I had done before which meant a hard look at the things that were not or very limitedly affected by ambiguity. which were as follows:

    1) I had an initial injury, quite possibly more serious then I had thought ( am am a warrior, as I am sure some of you are of many pulled muscles, sprains, etc.)

    2) after a period of initial rest, I proceeded to attempt to continue activity without any other healing modalities.
    In hindsight, this was another part of my warrior ethic that did not serve me well, but experience hands you the comb AFTER one has lost their hair!

    3) this behavior led to re injury multiple times.

    This I know.

    This I also know, when muscles & are torn, strained, more often then not they form scar tissue also called adhesions
    Well known causes of adhesions are: injury, overuse, and dehydration. All of which I was a practitioner of.

    So, I took this knowledge, and proceeded to see how it might be applying to me, how I might have a lasting effect on it and to what degree. As I did so, by slow moving and analyzing how my movements affected the injured areas, I discovered that as long as I did not put unreasonable stress on muscles and ligaments, the after effects of discomfort were of short duration. This informed me that I did not have a currently torn muscle or strain, but most likely was feeling the pulling and the reaction of my muscles and ligaments that had been affected by adhesions from my previous injuries.

    OK, so now that was almost unambiguous, but I still needed to put any program to help to the test. I figured that if I could lessen the tension being put on my skeletal system by lengthening and strengthening the effected tissues.

    I started by some gentle stretching, when I say gentle I mean to the point where you hardly feel it. I must admit, while I understand the importance of stretching, I had never allowed the time to do it while engaging in my sports because of its time consuming nature. I still am not too fond of it, though sometimes I can get into it as long as I have plenty of time, but I do it regardless. I added in strengthening exercises, isolating each muscle in the area and then combining them, used ice anytime I felt any sort of discomfort IMMEDIATELY. I am a firm believer in the ice effect, the sooner you can get it on the shorter the recovery period.

    After a few months and fraction of inches in gain of movement, I decided to try and play Tennis again. Too soon, to my dismay, but at least i did not play to the point of seriously reinjuring myself. I continued the stretching and strengthening program and decided that I needed a new activity that would work some of the same muscles in a less dynamic way. And along came tap dancing........

    I found it to be a lot of fun and while providing a strain to the area, it would resolve before the next class, in the few events where it didn't, I just skipped that class (maybe even ate ice cream and watched tv instead).

    This along with my regular regimen of swimming (I had never stopped that) and making sure I went to a PT WHILE I began to start playing tennis have finally begun to pay off. I am playing an average of 5 hrs a week now, still hurt a bit afterwards, but the duration and extent is progressively getting less which is more important to me then disappearing all together.

    All of this took a lot of time, since I enjoy most of it, it doesn't seem like a lot of effort, with the exception of the stretching but even that once I am involved the effort subsides and I believe it has been an essential part of my recovery process.

    Now, having the aforementioned personal experience, I find it difficult to swallow that I have repressed rage , though I may have and that that or some other emotion is at the root of my injuries and outcomes. I would be able to accept it as a possibility in some cases for others but certainly not the numbers stated for the general population though I can see how they might be drawn into such a conclusion.
     
  5. NicoleB34

    NicoleB34 Well known member

    I actually found Steve O's book to be easier to digest then Sarnos book. Even though Steve was inspired by Sarno. I'm not sure if you've given that book he read yet but it might convince you you're not as broken as you think . I sometimes wonder if my dreaded nerve block left any scar tissue considering that I bleed very easily and was told that any leaking blood near the nerve space could have possibly formed scar tissue. I will never know if this is true, but I do have clues that this is TMS, mainly because it moves around along the length of the nerve, sometimes within hours and then it will become almost absent when I'm absorbed in certain activities or extreme anxiety.
     
  6. ezer

    ezer Well known member

    Hi Carbonevo,

    Doing great. Close to 3 years symptoms free after having suffered from "PNE" for 12 years. Yes, I had quite a few symptoms equivalents from knee pain to sudden leg weakness.
     
    CarboNeVo likes this.
  7. FredAmir

    FredAmir Well known member

    Hi hodini,

    We are so much alike. I am the skeptical type too and at first I did not see how TMS applied to me.

    During my TMS ordeal of pain and disability I was plagued by questions about my condition that seemed simple, but that my doctors and therapists could not answer.

    · Why was it that I did not heal but kept getting worse?

    · Weren't all these months of rest and therapy enough?

    · Why do so many people in the prime of their lives suffer from back pain? My therapist had told me that most back patients are in their thirties and forties.

    · Why are there so many different diagnoses and treatments for back pain?

    · Why is it that despite treatments such as surgery many patients experience recurrence of their pain?

    · If the pain is due to inflammation, why does taking anti-inflammatory medications not cure the condition? I had taken so much of this medication that I had developed gastritis, but there was no significant improvement in my condition. How much inflammation could I have?

    Most of the people I knew with back-related problems were among the nicest people I had ever met. Was back pain the price one had to pay for being nice?

    Well, hodini, all these questions and more like why my worst flare-ups happened on weekends, were answered when I read Healing Back Pain. So be skeptical but observe your pain patterns and see if they match TMS.

    In case you have not seen this 20/20 report on TMS.

     
  8. CarboNeVo

    CarboNeVo Well known member

    perfect ezer! you still do the emotional work? + keeping thoughts in the present(not going negative..).
     
  9. JD1

    JD1 New Member

    Nicole:

    I healed myself of pelvic pain/interstitial cystitis using TMS healing principals. I see Dr. Stracks in Chicago and worked with a TMS therapist for over a year. Took almost two years to be nearly pain free (mild pain still comes and goes with stress sometimes, its just part of living with TMS). You can heal from all of it, no doubt. I didn't read this entire thread but just want to say: work the program(s) and do whatever it takes (see a tms doctor/therapist, etc.). Steve O's book is great; also see Nicole Sachs' and David Hanscom's books (and Dr. Schubiner's - he specifically talks about IC).
     
    MicheleRenee likes this.
  10. ezer

    ezer Well known member

    Carbonevo, Yes exactly, I still feel my emotions. In regards to negative/obsessive thoughts, I found Reichian or connected breathwork a powerful tool.

    JD1, Fantastic. I am so glad more and more CPPS patients report progress. I wish more people would post their success stories on pudendalhope. The few of us that have posted about TMS have been ridiculed or treated as con artists. It is tragic how new members are systematically being directed in a friendly but firm way to go consult with PN-aware experts. We all know where that leads.
     
  11. CarboNeVo

    CarboNeVo Well known member

    I know you are a big fan of tolle and you referred to him quite alot :) I guess this is what you practice when feeling emotions and not going down the negative lines of thinking, correct?


    What he says is pretty much an interpretation of Monte's ideas, or more likely Monte got his ideas from Tolle :D
     
  12. Ewok

    Ewok Peer Supporter

    Hi Nicole, Women have pudendal nerve blocks all the time in child birth - it's used commonly for pain relief in many countries. Think of the battering that area of the body takes delivering a baby and there would undoubtably be bleeding in the area of the nerve if they did a block under those circumstances, and all those women are fine so I wouldn't be concerned about the scar tissue. Scar tissue and adhesions are really common and usually don't cause any problems at all. I was offered a pudendal nerve block too for my pain but I was terrified of it so refused. I really just think it's tight muscles. Otherwise how else could the pain briefly disappear if there was a structural problem? Good luck :)
     
    Chizzy likes this.
  13. Ewok

    Ewok Peer Supporter

    Hi Ezer,

    I am confused about breathing and its effect on emotions and thoughts. I have seen people advise elsewhere that deep breathing when upset is just another way of repressing or avoiding emotions. Is this not so? Do you think it clears the mind?

    Ewok
     
  14. NicoleB34

    NicoleB34 Well known member

    Ezer, one of the reasons i stopped going to those PN sites is because there seemed to NEVER be a success story. It was all despair and questions like "has anyone ever had success with........?" Never a happy ending. I needed positive news, and there never was any. That's why your story always resonated with me. I do have a hard time with "feeling emotions" though. My biggest hurdle is anxiety. Mainly because i've been told it's sort of a false emotion. I can get what you mean about feeling the body. I can relax for a moment and feel inward, but often what happens when i do that, is that i feel tightness in my chest and belly, and i know that's anxiety. I think the anxiety might be overwhelming or blocking emotions that i could be feeling. When i'm not feeling particularly anxious, then i dont feel much of anything at all. I've done some exercises in feeling emotions, and it seems like they all go back to feeling some sort of fear or anxiety. that's all i seem to be able to feel.
     
  15. hodini

    hodini Peer Supporter

    Hi Fred,

    Thank you for your response to my post. First of all I applaud your mentioning not to label ones self "stupid" Fortunately for me, I heard that all the time from my grandmother and father that I am not stupid even if I do stupid things. It was a very important concept to me growing up and am glad you brought that piece of "kitchen table "wisdom up.

    I don't know if our experiences are really all that similar, from what I understand your situation was much more debilitating then mine. You used some strong adjectives in describing your "ordeal " and being "plagued" by seemingly simple questions. I think that the way in which I approached my issue (finally....) was different because of how I would have responded to some of the questions you posed like:


    · Why was it that I did not heal but kept getting worse?

    Sometimes, when a simple question is asked a simple answer can be found, in my own case, eventually I had to face the fact that I had really injured myself more then what I had originally thought (Who brought that kryptonite out! LOL). It kept getting worse because I kept on re-injuring it by not seeking other healing modalities. Also, I actually appreciate it when a doctor says "i don't know" when a question is posed, because in the majority of instances when that has happened, the doctors expressed an interest in finding an answer which told me that they were involved in my care and willing to explore possibilities.

    · Weren't all these months of rest and therapy enough?

    It would seem seem like it should have been in my case, but again, I misjudged how fast I "should" be healing because of my limited knowledge of the anatomy, the way in which muscles and ligaments repair themselves, the corresponding location and possibilities of nervous system involvement, etc.

    · Why do so many people in the prime of their lives suffer from back pain? My therapist had told me that most back patients are in their thirties and forties.

    That question would not surprise me at all. For me an obvious answer (among many others) would be that after ones invincible teens and twenties, ones life may become less active because of work and family. more sitting, more responsibility, more stress. After ones forties and into ones fifties (the half century mark!) one starts to accept certain aches and pains as a fact of life.

    · Why are there so many different diagnoses and treatments for back pain?

    Again, that question brings to mind for me an obvious answer. The back is such a complex structure and is required to perform in so many ways in which our western culture demands of it, it is not unusual for me to think that there would be many different diagnoses.

    · Why is it that despite treatments such as surgery many patients experience recurrence of their pain?

    Without qualification of that question, i.e. what is many ? 10%, 30%, etc. it is hard to get to an answer. But if it were proven that large numbers of persons experience recurrences of their pain after surgery, wouldn't some of the possibilities be because their surgeon had too much to drink the night before, or more likely that lets say that they had poor posture before the operation and they did nothing to address that after their pain might re occur, or any other combination of before and after contributing factors. Certainly, I would think that most people will tend to discuss their bad medical experiences and take for granted the good ones, just part of our western human nature.

    · If the pain is due to inflammation, why does taking anti-inflammatory medications not cure the condition? I had taken so much of this medication that I had developed gastritis, but there was no significant improvement in my condition. How much inflammation could I have?

    Pain may be due to inflammation, but if any of the many possible underlying conditions are not addressed how would one expect the the inflammation to subside ? anti inflammatory meds as far as my knowledge are not supposed to be taken on a long term basis for just that reason that gastro intestinal issues may arise.

    Most of the people I knew with back-related problems were among the nicest people I had ever met. Was back pain the price one had to pay for being nice?

    This last question is pretty self evident to me. If you take the "...back related problems..." out of the sentence, I think we all can agree that most of the people we know are nice, if they were not why would we want to know and become more acquainted with them. The fact that some of them have back pain is simply incidental. To infer that "backpain" may be the result of being a "nice " person is stretching it a bit to say the least.


    I am not saying the way I felt and view the questions you posed is the "right" way or not. Only pointing out, that the way I viewed the questions you posed left me with a variety of different methods and mindsets to continue to find ways in which to attain my goal which was to be able to actively play tennis again. I would say the impingement on my lifestyle disturbed me more then the sensations of pain when they came.


    I have been told quite often here, "read Healing Back Pain, it will answer all your questions". To me, that is a bit reminiscent of the line in the Manchurian Candidate where all the members of the troop kept on saying the same thing;
    " Sargent Raymond Shaw is the is the kindest, bravest, warmest, most wonderful human being I've ever known in my life ....." I am almost finished with the book and actually it has raised many more questions for me then answers.

    And yes, I have seen the John Stossel segment, John, besides being a fellow New Yorker, is well known for his softball approach to investigating phenomena.

    However, he is a happy believer!!!
     
  16. ezer

    ezer Well known member

    Carbonevo, Good stuff! Yes and Tolle got his ideas from Watts, who himself got inspired by Zen Buddhism. Also if you read Reich, Lowen etc. , the same concepts come up.

    NicoleB34, please do attend to the physical sensations created by anxiety. Don't ignore it because someone said it is a false emotion. You are absolutely on the right track by feeling your body's response to anxiety. Feeling the physical sensation (without thinking) is all you need to do.
    See Day9: Somatic program from Alan Gordon. Watch the video. It is all about the body's response to anxiety.

    Ewok, there are 2 things that you need to do IMO:
    1) Stop getting into those patterns of negative/obsessive thoughts (not emotions, just negative chatter in your brain)
    2) Attend to your day to day emotions and feel them in your body

    1) is hard to achieve in modern life. I found that connected breathing can stop the chatter very quickly and you experience muscular tension release.
    As a side note, if you do connected breathing for 30mn or more, the amygdala gets activated and deep buried emotions may come up to the surface. Proceed cautiously.

    http://www.goodtherapy.org/learn-about-therapy/types/reichian-breathwork (Reichian Breathwork)
     
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  17. Bodhigirl

    Bodhigirl Well known member

    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?[/QUOTE]
    I hope you are mending.
    I had the whole IC and then pelvic spasm syndrome. Meditation with Schubiner's accompanying CD to his book "unlearn your pain" was very helpful.
    I also used a few books of pelvic floor stretches and still use them in my meditation...along with other yoga to wake mind and body up and into One.
    I have been on the Interstitial Cystitis for 25 years!!! Am finally brave and recovered enough to step outside my comfort zone, so far so good!
    I also use myofasial tools to release tension and breath and visualize my inner kid, whatever needs may be screaming out for attention beneath the pain. It works!
    Sending good wishes...
     
  18. FredAmir

    FredAmir Well known member

    Hodini,

    Interesting answers to my questions. Certainly, we can go back and forth on these answers, but what I know is that accepting TMS helped me begin my recovery immediately and permanently. So, continue with your skepticism, but as you learn more about TMS, see if it applies to you.
     
  19. Ewok

    Ewok Peer Supporter

    Thank you Ezer. I really appreciate the time you take to answer everyone's questions. Did you use the breathing techniques while you were healing or is that just something you do now? Is it something you do every day? (I just have very limited free time so am trying to work out what is the best use of it each day e.g. breathing or meditating or journaling etc. as I only have time for one. I try to do the feeling emotions in the body all day long.) Also, I watched a few videos and there seem to be different patterns re mouth or nose. What did you find best?
     
    Last edited: Jul 23, 2017
  20. Jason32

    Jason32 Peer Supporter

    I'd stay off pudendal hope- I was in a panic for months after my initial injury when I read that site. There's almost no successes (other than TMS) and the few who claim pudendal surgery worked for them either aren't fully cured (still getting nerve blocks, etc.) or claim it didn't take effect until three years later (that makes no sense whatsoever). There's some shady stuff that goes on there too now where it appears fake "success stories" are being posted for certain providers who are also advisors to the site, which me and several others called them out on. But you read those stories and just flip out- there's almost no evidence for any of the risky treatments they do (and insurance doesn't cover most of them) and if you question the safety and effectiveness, you get told that you're a pelvic pain patient with a rare disorder and you should feel lucky that any Doctor even bothers to treat you- how condescending! I just don't know how anyone would ever agree to do half the stuff they try- I'm way too wary of medical procedures to try stuff like nerve blocks, neuromodulation, pain pumps, surgery, trigger point injections, shockwave therapy and all the other crazy stuff they try. None of them get better with treatments either and it's a scary thing to read.

    I know I talked about this with Ezer before, but I was curious with everyone who posted here- have any of you ever been to a pelvic floor PT and if so, what did they tell you? I still struggle at times with what I was told, because both PT's I went to told me my sacrum, coccyx and pelvis were misaligned and that was giving me PN. I asked them why my MRI came back normal and specifically said there were no misalignments, and I was told "Doctors don't know about this stuff." I know structuralism is poorly correlated with pain, and a lot of what they said sounded like chiropractic nonsense, but it does bother me sometimes because that was my very first symptom after I fell (and before I read anything)- that is, when I sit on a hard surface it still feels like my tailbone or sit bones are "sticking out" and always have a dull ache, like I'm sitting on a rock (or two rocks, one for each sit bone). But- I have a history of OCD, health anxiety, etc. and have "felt" abnormalities like this before that didn't really exist, so I don't know. And I've spoken with people that have gotten way worse with pelvic PT too so it scared me way too much to proceed.
     
    Last edited: Jul 23, 2017

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