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Theory about TMS and bladder pain

Discussion in 'Support Subforum' started by Time2be, Dec 12, 2018.

  1. Time2be

    Time2be Well known member

    Right now I am not well. I feel terrible to be honest. I have a flare of my bladder and urethral pain, the pa8n that was lingering for two months. Now since a week or so really bad pain.
    Here is my theory after reading a lot of new stuff on chronic UTI. Basically I think what I have is both, somatic and psychological.
    There are two facts I learned: the first is that the cultures where they test for bacteria in the urine are not reliable and valid. About 20% of infections are not detected. Why? That’s the second fact: bacteria can hide in the tissue, sometimes also in a biofilm. These bacteria are dormant and they don’t replicate as usual. That’s why they are missed with a dipstick test and also in cultures in the lab.
    When do they start to make symptoms? That’s were the psyche enters the stage. Most suffers of chronic UTI say that they have a flare when they have stress. You also need to know that urine is actually not sterile has it has been thought for decades. The bladder shares a bionome with the vagina. There are numerous bacteria in the healthy bladder. But they are in community and balance.
    Question is now: does stress causes some of the normal bacteria (bionome) to grow and cause symptoms? Or is there a first infection with later dormant bacteria hidden in cells that makes the symptoms. That’s not known yet. Both is possible and maybe both types exist, even co-exist.
    Here I am: I think I have a sort of infection with embedded bacteria or overgrowth of one or two of the normal bacteria, most likely around the urethra (Skene glands - the female equivalent to the prostate).
    What to do? I think the true nature of my condition is mixed. When I am stressed and worried, when I am overworked, I have symptoms. And sometimes, when the symptoms stop I know that I felt more safe or had a better and more positive outlook. Sometimes it really is an event or some person the stepping of symptoms is related to (unfortunelaty also the opposite). I am now pursuing possibilities also on the somatic level. Because, if there is embedded bacteria, I think I need to get rid of them. There is a professor in the UK treating these conditions with long term antibiotics. I am not a great fan of antibiotics, however, if this is the cure that works I am willing to try it. But I am very much aware of the psychological side of it. For example the quest for a quick fix that is brought to you by a professional. Although long term antibiotics is not s quick fix. It takes time and patience.
    I know this is in a way the wrong site to write this. And also want to highlight that I think that a huge part of bladder pain and pelvic pain is pure TMS. However, I think in the light of new research (cultures not reliable, biofilm and embedded bacteria as well as the bionome) one has to think a bit out of the box. At least that is where I am right now. I wrote to the professor and also an urologist I know. I am waiting for a reply.
    By the way: my own urologist is so much convinced of the TMS nature of my condition that she didn’t take my concerns serious. She denied the sheer existence of biofilm, also that the cultures are not reliable. And I have the strong feeling that she lied about inspecting the urine through microscope. She said I never had leucocytes in my urine. And I find them constantly with dipstick testing and the same at my doctors place (dipstick). The first measure would be to find someone who does microscopic testing of the urine.
    Am I way out? Or does this makes sense?
    Meanwhile I try to calm down and give me some rest.i
     
  2. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    I think that there is a lot of truth to what you're saying...there can certainly be a physical/psychological interaction to our conditions. Not everything is 100% TMS or physical. I believe that is especially true when it comes to our immune system! Sure, you can have fully TMS caused symptoms without any pathogen, that surely happens to lots of people. But it can also be true that with stress and emotion, the immune system can become weaker and therefore leave you more susceptible to infection. Both scenarios are possible. It might be hard to tell without a reliable test for the bacteria...though remember, the presence of H. pylori in the stomach often causes doctors to misattribute GERD pain to this, but not everyone with the presence of H. Pylori had symptoms. Sounds like more research needs to be done into the embedded bacteria before we can know for sure!
     
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  3. Andy B

    Andy B Beloved Grand Eagle

    I think this is a good observation, and that although you may be tending toward a more physical diagnosis at this time, you clearly see the correlation with the psychological. I think in many "infection" or "out of balance"symptom paths, particularly in digestion there is evidence of the physical reality changing in relationship to psychological. So my (obvious) tendency is to treat it as psychogenic with the expectation that the body's systems balance themselves.

    I think people benefit from this discussion.

    When we think of the complexity of our physical system including all the organisms that live on us and in us, I think it is helpful to see what a miracle it is that everything tends to apparently stay in balance, for most people most of the time. It is when symptoms arise that we get out the microscopes... and then we find things. It is helpful to remember that in the physician's/researchers world, understanding of psychogenic influences is not fully acknowledged or understood.

    I think it is good to be patient with yourself as you find your way through, knowing that you will become more clear, and healthier over time.
     
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  4. AnonymousNick

    AnonymousNick Peer Supporter

    This sounds a lot like how I used to think of my digestive system or even the persistent sinus pressure I have: some kind of low-grade simmering infection -- SIBO and such.... I believe now that the overriding factor is TMS though and the more attention that is paid to the infection (if it exists at all) is more distraction from the real issues. I shudder at the people getting fecal transplants and such strange therapies, seemingly battling this on the exactly wrong front.

    You could be right of course though, and you should use your intuition, although it sounds like the therapies for such a thing, like the antibiotics, aren't acceptable to you. I never liked the idea of antibiotics either and tried all the natural antibacterials including some pretty uncomfortably strong oregano products. One was a nasal spray... ouch! They didn't work. I might still use these if I was sure I was sick, but the devious hiding little bugs of destruction just casually making mayhem is just not something I believe in anymore.... good luck!
     
  5. Andreita

    Andreita New Member

    Hi Time2be,

    Sorry to read that. I'm in your same situation. I've been struggling with urinary symptoms for 3 years now and it allí begun with a UTI. My main problem is the frequency but I also have pelvic pain. For me, frequency is the worst!!!

    Like you, I feel better when I am not under stress or I don't feel unhappy. 3 years is a long story so you can imagine the number of doctors I have seen. in my first year, when I thought that I could have Interstitial cystitis, I have also checked the biofilm stuff. Nothing showed up.

    I think that you are now worried about something physical because you are having a bad flare-up but, in my opinion, if you feel that you are better when you are not stressed, this should be pure TMS.

    I'm quite new with TMS so I'm still at the same point and with the same sympthoms. I'm a begginer.

    In any case, you can write me a prívate message if you need to know what kind of things and tests I have done to end up finally here.

    I'm from Spain, btw.

    Hugs!
     
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  6. Time2be

    Time2be Well known member

    thanks all for your replies! First of all it warmed my heart that you all take my situation serious. And secondly, of course I am also happy that you not just dismiss the whole idea. And you think, as AndyB@ puts it, some might benefit from this discussion. I know that doctors have incomplete knowledge in many fields. And that at some point you also have to trust a doctor's intuition.

    However, dismissing the whole idea that there also might be an infection that has to be treated , that was and is the way most of my friends and my family reacted. In my case they told me from the very beginning that it is psychosomatic, my GP even telling me that I don't need to go to an urologist. Friends and family now say that I have a psychosomatic condition and that's it. Easy from the outside. Some of course tell me I should go out more frequently (especially when it suits them) or have other sometimes absurd advice on how I should change my life. Then, I feel on the one hand guilty and on the other I feel angry. I read in David Clarkes book (they can't find anything wrong) that he called one patient a hero. I really understand this. Being in pain, doing your job anyway and socialising to some amount is very hard. I am not the type for self-pity, but yes, sometimes I am ...LOL

    One friend had a similar experience with her daughter having Lyme disease. She was in a very bad condition, seizures, couldn't speak anymore for some hours, blood work showed lots of strange, not normal results. She had a positive test for Lyme from a hospital in another European country and they won't accept it here. Doctors dismissed their concerns, some friends told them that all was psychological. They researched a lot and found a possible cure and now she is in recovery, but it is a slow process. I know what you might think, I thought it myself at times. That Lyme is another disguise for TMS. It could be. But it can also be real.
    What AndyB@ says, resonates a lot with me. And I am not making hasty decisions. At the moment I give myself rest and try to get the stress level down.
    The interplay between the psyche and the body is still a miracle for scientists and doctors. I started to write about dualism of matter and mind etc. and deleted it again ... I got the feeling that this is leading me away from my problem :)
    Andreita@, I send you a private message, I am interested in how you experience this and what diagnostics you had for biofilm (didn't know that there is a valid diagnostics).
    And Anonymous Nick@: well, the antibiotics route is not attractive, no. The natural alternatives lack evidence. However, if there is evidence that I need antibiotics, then I might say yes to it. Now I wait for the answer of this prof. I hope he doesn't just say in a standard letter that he cannot tell me anything over email.
    I'll keep you informed.
     
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  7. Andy B

    Andy B Beloved Grand Eagle

    Here you are touching into self-compassion, I think, and real recognition of the challenges and stress of "not knowing." This is important in the journey! Not being sure adds stress and pressure, and activates more personality stuff. It seems you are being mindful.
     
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  8. readytoheal

    readytoheal Peer Supporter

    I’ve heard before that part, or the core, of OCD is difficultly accepting uncertainty. The uncertainty causes a lot of anxiety. I find this to be true for me. I hate not being sure or certain and I think it makes it a real challenge when accepting tms. There is no way to know 100%. And I’ll get stuck on the unsurety rather than accepting the probability. Just a thought.
     
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  9. Time2be

    Time2be Well known member

    Thanks Readytoheal. Certainty vs. probability. Yes, that’s a huge problem for me. I should also be able to rely on my intuition. But I am not able to do that right now.
    To keep you informed. I have an appointment in the beginning of January in London. If there are high leucocytes then a antibiotic therapy might be necessary.
    I was at the ER yesterday, pain was so bad, I didn’t know what to do. They tested the urine (dipstick) and there was nothing. Even not leucocytes. What I don’t know: does the antibiotics I took and that colors the urine yellow make it impossible to see the leucocyte field turn purple? Of course, they use a machine that looks at the stick. And I guess it is not based on color but on chemical substances. So, the substance that count for leucocytes should still be there. But I don’t know and the doctor didn’t know either. She didn’t want to give me other painkillers than I already have (nothing with morphine etc.). I left the ER with nothing. She was sorry that I was in so much pain, many women have the same the told me. Well, that’s of course good to know, grrhhh.
    Back from the ER I simply knocked myself out. I took 20mg amitriptyline and was so tired after one hour that I went to bed at 8:30 p.m. I slept 12 hours and it’s better today. I also stopped taking the antibiotic which I took for the last 7 days. Antibiotics always make my urethra hurt a lot. Either this is because it’s killing the good bacteria or it’s because the bad bacteria come out (theory of embedded infection). I don’t know.
    In January I have an appointment with the doctor in London. If he cannot find leucocytes in my urine, then I can be 100% certain that it is TMS, pure TMS.
    Meanwhile I try self soothing and I need to stop reading about chronic UTI. All these pictures of bacteria that are in the deeper tissue and the heartbreaking patient stories (though success stories in the end) have influenced me lot. My anxiety peaked, I was not able to do anything else than googling and reading bladder stuff. The doctor in the ER was quite puzzled when I told her about embedded bacteria etc. I think in my journal it says that I have fear of disease and that I am very well informed. As an reaction doctors don’t feed that side anymore and don’t speculate about possible reasons. In a way this is good.
    Basically I have plan: staying calm and treating myself good. See what the doctors appointment brings. And then decide. And I take the amitriptyline. It’s s crutch, but right now I need this.
     
  10. kimaya

    kimaya Peer Supporter

    I read about it too during my early stage it’s such a spin to go through
    Also even if they find high white blood cells what’s the credibility of his analysis being correct , that could be only judged if a person with no symptoms go through the screening without him knowing and his analysis is correct

    Also if it had even slight possibility there’s alot of research that goes somebody would have definitely found it
    I don’t want to scare you but during my research i found out his office was shut down as some of his patient died of organ failure due to long antibiotic use
    I would suggest meeting a tms doctor and discussing the possibility of it as they are more open to new research and ideas
     
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  11. Time2be

    Time2be Well known member

    Hej Kimaya, thanks for your input, you don't scare me. Yes, I know about this incident. It was one patient who had organ failures, but the patient had this from another treatment. The clinic had been reopened after a month or so. The patients organized the media. And there was a discussion in the UK parliament about the guidelines for testing etc. There is research that the tests are not good enough, but there are no other options. His solution is to go for the white blood cells. He is controversial, but I don't think that he is putting patients at risk.

    This said. I also have some doubt about using white blood cells (and epithell cells) as the only criterion (though he also uses patients history etc.). I am aware of this. I asked Howard Schubiner if this is normal to have white blood cells in the urine and he answered: "at times it is normal". I have them frequently. However not according my urologist. Now I heard that there could be inflammation from muscle tension. It's all speculative. An urologist here told me that having white blood cells without bacteria is non-significant.
    I hear what you are saying and I consider what to do. Today I am much calmer. And I don't google :)
    thanks again!
     
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  12. Andy B

    Andy B Beloved Grand Eagle

    Hi readytoheal,

    Alan Gordon writes something very powerful in his multi-media program about fear: that we tend to scare ourselves --or raise the level of alarm because it is a sort of survival mechanism. That fear activates survival pathways. By being alarmed we are in heightened awareness, so that we are therefore prepared for danger --or ready to make ourselves safe, protect ourselves. His work helped me see this more clearly.

    I mention this because I want you to know that in humans there is a tendency to "scare ourselves" in order to be safe. Observing your process I see this, and I hope you might see this in yourself with compassion.

    Andy B
     
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  13. readytoheal

    readytoheal Peer Supporter

    Thank you, Andy B. Very helpful! I just wish I knew how to convince my mind that I’m safe and it can stop scaring me. I never feel safe..which I suppose is why I’m in this boat. I do think just noticing when my mind is trying to scare me, observing the tactic, will help significantly. Just being aware of the strategy and understanding that it is trying to help. But how to convince yourself you’re safe when you don’t honestly believe you are- that’s hard. Maybe I need to revisit Claire Weekes. Thanks again.
     
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  14. westb

    westb Well known member

    I've been away from the Forum for a bit so have only just caught up with this post. I am so sorry that you are in renewed pain again and my heart goes out to you. I fully understand the uncertainty and the difficulty of living with not knowing, and being torn about which healing path to follow, as this applies to my TMS issues as well.

    I applaud you for being open to different solutions and I wish you all the very best on your healing journey. Please keep us posted on how you get on.

    PS: I've ordered Pema Chodron's book "Living Beautifully with Uncertainty and Change" https://www.amazon.co.uk/Living-Bea...g+beautifully+with+uncertainty+and+changefrom my local library. I like the title!
     
    Last edited: Dec 16, 2018
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  15. Time2be

    Time2be Well known member

    Dear Westb, I hope you are doing better! The bladder and urethra pain is this time quite severe. Usual painkiller do not really touch it, I use them but they just take the edge of the pain,nothing more. I try guided mediation, mindfulness etc. There is always a psychological component, for sure. However, I really think that there is an embedded infection in the background. I read so many stories now that resemble mine. I feel somehow defeated. Although, if this antiobiotic cure really helps I will use all my TMS knowledge to recover and to also make life changes. All I need to do now is to stay calm. I’ll have the appointment with the Dr. in London in the beginning of January.
    The book title sounds good, yes. It’s difficult to live with uncertainty and change. However, if we are honest then this is what we are doing all the time. And I think that those who have a sort of ‘chronic’ condition (i don’t want to imply that TMS is a disease) know that very well.
    Do you also think there is something ‘structural’ behind your symptoms.
    Asking this I feel a bit uncomfortable because this is a forum for mind body syndromes and I am kind of entering mixed ground here. I fully acknowledge mind body syndrome /TMS and I still believe that part of what I experience is TMS, for example that reading a lot of bacteria let me almost feel these bacteria. And anxiety makes the pain worse. Right now and until I have the appointment I need to stay calm, soothe myself and try to make me feel as comfortable as possible.
    Don’t feel discouraged in your TMS approach! Everyone is different!
    Thanks to AndyB and readytoheal! I find it so heart warming to have people thinking of me! I am grateful for that!
     
  16. Time2be

    Time2be Well known member

    It’s Christmas Eve and I want to wish you all a merry Christmas.
    I am calmer now, the pain sometimes subsides. I am really in doubt about this embedded infection theory, at least whether it applies to me. I checked my urine the last week and I sometimes had no leukocytes in it. Not from the first or the midstream void. That would discount the infection theory.
    I discovered TRE therapy, a strange thing, you tremble and by this you release tension. It seems to work a bit but I am only in the beginning.
    And this time I didn’t drive home to my parents. This time it is Christmas at my place. I went to church in the afternoon (which touched me and I had too hold back my tears) and then in the evening I will be with friends. No 11 hour drive, no parents that constantly struggle. I know what you might think: did she need the pain to tell her parents that she doesn’t want to come home for Christmas? The thought dawned to me also. However, no, I don’t think that this is the sole reason.
    Now, enjoy the Christmas days - either alone, with friends or with family! Be aware of the moment and trust that things will get better.
     
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  17. westb

    westb Well known member

    A peaceful and happy Christmas to you too @Time2be, and to everyone else who is celebrating today. I too will be with friends later for part of the day.

    You asked in an earlier post if I thought there was something structural behind my IBS symptoms. I'm pretty sure that they are of mind/body origin. There are secondary factors: my father had a terrible digestion as well, but he was also a worrier who bottled up his emotions as did so many British people of his generation. So maybe I inherited a "bad digestion gene" or maybe I inherited his TMS personality type. Frankly I think both may be true but that the solution definitely lies with working on the latter. Also. I had an eating disorder which dominated much of my adolescence and adult life, now thankfully resolved (mainly thanks to the severe discomfort the IBS causes when I overeat!). I eat very healthily but out of enjoyment and relief that I am no longer suffering from eating binges. So I am in the TMS camp here. but I think an overeall healthy lifesyle can only be a good thing. Basic self-care really.

    I hope that your appointment with the specialist in London helps to clarify things one way or another. And again, happy Christmas!
     
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  18. Time2be

    Time2be Well known member

    Dear all, thanks again for all your contributions. I made a decision today. I won’t see the London specialist. As Kimaya also pointed out the diagnosis of an infection on the basis of white blood cells and epithelial cells sound a bit speculative. It is definitely not main stream. And I also read that he thinks that even a few wbc in midtstream urine would indicate a low grade infection. To make it short: I cancelled the appointment because I could see me already being indecisive whether I should take the antibiotics or not. I received also very good advice over email from an urologist in Los Angeles. I will post some of his considerations on bladder pain in a different thread.

    Instead, I will try to get an appointment with another specialist in London who is much broader orientated and who actually tries to find the bacteria. But he looks also into the pelvic floor muscles and histamine issues. I decided that I want to have a second opinion to be sure that I have TMS and I think he is a much better choice than the other doctor (who relies solely upon the wbc count). He has a long waiting list, I hope that I will get an appointment within two months or so. In the meantime: self soothing and staying calm.

    By the way, I drove myself crazy with checking my urine for wbc. Sometimes there are some, often none. First I thought I found a pattern (in the night non, during day some), then the last two nights it was the opposite. There is no real pattern. And the finding of wbc on this day when the specialist looks into his microscope would be totally random.

    I am bit anxious that I cancelled the appointment, what if the pain is getting worse? I know, this could be a self fulfilling prophecy. Anyway, I know that I don’t want to take antibiotics for a year or more.
    And of course, the TMS work, I continue that. I found the TRE exercise, a bit strange, but relaxing and it calms you down in a special way.
     
  19. readytoheal

    readytoheal Peer Supporter

    My son once had a blood test for allergies that came back positive for several things. Based on the blood test the doctor told us he would (not could but would) develop life threatening reactions if he continued to eat peanuts and shellfish based on the high number of antibodies in his blood. He actually personally called me at home because he was so concerned about the results. He prescribed us an epipen and we were advised to keep it with us at all times. It was all terrifying but puzzling. My kiddo ate shrimp and peanuts all the time- no problems. But according to this test, he was highly allergic. We found a different doctor for a second opinion who let us know that the blood test isn’t always accurate and to disregard the results if he had no issues! And we did. This was years ago and he eats those things regularly still without any problems. I learned that tests don’t always mean what doctors think they do. I’ve read since that doctors now think the antibodies could actually indicate a tolerance not an allergy. So who knows! What if we all occasionally have wbc? Maybe it doesn’t mean anything. Maybe it’s a fairly normal abnormality. If it was a low grade infection your body would likely fight it off on its own over time unless you had underlying health issues and certainly the pain meds would help. The fact that the wbc count varies to the point of none and yet medication isn’t helping much sounds to me like it isn’t an infection. Even the OTC medications help the pain of a real raging infection. I think it’s good to seek answers if that’s what your heart and mind need. Just offering an outside perspective.
     
    Last edited: Jan 6, 2019
  20. Time2be

    Time2be Well known member

    Thanks readytoheal! God example with your son and the allergies. It’s all so disturbing and reading the literature doesn’t help. One doctor says this, the other that. And medical experts are in conflict about the right diagnosis and therapy. How should we, the patients know what is right? I used my intuition today. And I hope I was right. You are right, I guess there are wbc in urine to some amount in all people, at times. My mother tested also and she also had a few wbc.
    I am surprised how anxious I am now. It is like I expect that something horrible will happen if I don’t see this specialist. Which is rubbish, I know. You are also right, I am looking for certainty. And if this other specialist can rule out any infection I feel certain. He is also looking for histamine intolerance, however he seems to be someone who has not a one seize fits all thinking. That was basically what I felt the doctor I have now cancelled the appointment with has, as far as I can judge. My sister said today that there is no certainty. And a friend said, the only things that are certain is death and taxes (lol).
     

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