Pelvic Pain - Healed

Hi Ezer
Thank you for your inspiring posts. I have CPPS for about 9 years and after experience of Several symptoms, I suppose your cognition from CPPS,TMS and PNE ,... is correct.
I have a question. Don't you think that some part of other therapies such as BTX Injection, physical therapies, .... you had was essential and complementary with TMS approach or Emotional work?
I want to know that for TMS we should follow just emotional work approach or other therapies like BTX,PT, ... to be Considerred as complementary approach?
Thank You in advance
Chriss

 

Whatever works. If some modalities help you then the more power to you.

In my case, those therapies were useless (In addition I had a terrible allergic reaction to BTX). I did that stuff circa 2004 and stopped for lack of results.

But in any case, there is simply no possible correlation between PT/BTX/nerve blocks etc. that I did between 2004-2006 and becoming asymptomatic in 2014 with TMS work.

 

Thanks for your reply Ezer,
I'm an engineer like you, and as project manager I see myself under tones of job pressure, and these pressures don't allow me to release myself from the types of job pressures. Most of the times tolerating of pressures is too hard for me and exacerbate the pains and other symptoms. On the other hand leaving job is fearing for me because I have to loose my situation and of course I need job income. As I read your posts it seems you had a similar situation and you also left your work too. My question is ;
1- Do you think that job resigning is a key solution to release from the pressures or vice versa based on some ideas I should change my view points about the job chalenges?
2- What's your recommendations or guides for me to manage the life and work stresses which made symptoms chronic?
Thank You Engineer
Chriss

 

Hey all,

Just a quick post to see where everyone is at with their battle against their reptilian brain I haven't posted since end of 2018 so to let you know, I've been basically working with neuroplasticity for my PN and my digestive issues (the IBS and chronic anxiety/panic attacks I can handle). But the PN symptoms have changed many times, so my brain's been playing games. The moment I lose fear of one type of flare-up scenario another variation comes up to throw a spanner in the works, and cause even more anxiety and fear.

Since I was last on this forum, I've been in touch with Alan Gordon, Dr Howard Schubiner, Dr David Clarke, David Butler (co-writer of Explain Pain, with Professor Moseley) and I've also looked into the brain-map work of Michael Moskowitz. Every one I corresponded with (I even had a Skype session with Dr David Clarke!) has told me I have true TMS/MBS or PPD (I think PPD is the latest name these days? Psychophysiological Disorder). I liked Dr Schubiner's advise to me, which I will share with you here. He said:

"You have TMS (he calls it MBS for Mind/Body Syndrome) and nothing more. You can get better, but you are trying much too hard. Here is the best advice I can give you; avoid the 5Fs:
1. Do not fear pain
2. Do not focus on pain
3. Do not be frustrated by pain
4. Do not fight pain
5. Do not try to fix pain.

When you completely avoid these, you will be better."

Dr Schubiner also confirmed that LPR (laryngopharengal reflux or "silent reflux" as they call it) is MBS, and he said like other MBS conditions, including PN, fear of it will tend to make it worse, and that I'll develop new symptoms over time if I keep the fear going. He reminded me to stop fearing the symptoms, and in the case of LPR to start introducing more foods gradually. You see, I went on a strict low acid diet in early 2018 and lost around 12kg (28 pounds), which is quite a lot, plus I developed food intolerances to certain foods that I never had trouble with in the past. Dr Schubiner said developing food intolerances (not allergies, mind!) is TMS.

So that's where I'm at right now, introducing new foods slowly to my diet and in the meantime still trying to disregard my new variations of PN flare-up symptoms. For some reason, however, the moment I lose my fear of one symptom, another one rears its ugly head (even with the LPR!). This PN business (and all TMS/MBS/PPD conditions) is like doing battle with the Hydra!

I would love to hear of your progress, people!

Greetings from the land Down Under

 

@Syl. Hi and thank you for this very comprehensive update. As someone whose symptoms are manifesting as IBS, I'm very interested in your report, and impressed by your diligence and dedication to your recovery. Thanks for updating us. I'm particularly struck by Dr Schubiner's advice to you and the 5Fs. Wow. I'm working on accepting the pain/symptoms but the fear and frustration in particular are still there - it's almost as if they've become part of my body's DNA. Not fighting and not trying to fix the pain/symptoms I'm seeing some progress. But it's good to have that checklist.

I too have been dealing with food intolerances and am gradually re-introducing foods or trying new ones after being on a pretty limited diet. I also journal almost daily, something I've done since before the Mind/Body syndrome struck (actually I prefer this term to TMS, but that's just me), being a devotee of Julia Cameron's Artist's Way for a couple of decades. I'm trying to get back to proper living as opposed to existing with this horrible condition, but in a weird way I am optimistic - I've changed for the better in many ways through dealing with this, though sometimes I have to acknowledge the fact through gritted teeth. It's about accepting who I really am, warts and all, love and rage and anger and impatience and kindness, fear and faith, all combined. And above all about self care and acceptance of myself and others.

All the very best to you. xx

 

Hi Syl, what an interesting update!

I have been pain-free I'd say 95-99% of the time since I discovered TMS and began my healing journey a few years ago. I can now always attribute my flare-ups to something (i.e. I can rationally say "Oh, there is a reason for this, I have pushed myself too hard again"), so I'm not just living in fear of seemingly random flares. I do use a CBD topical pain cream on my perineum when I have a flare up which I find helps (although possibly placebo), but I tend to use it only once or twice per month. I'm feeling so good! I bike, I hike, I jog, I do yoga, I climb, I chase after my toddler and 2 dogs, I sit for many hours as required, etc.

My sense is that it sounds as though you are far too academic about this. You seem to be too much "in your own head", intellectualizing about everything. You clearly understand the theory in great detail and could probably teach a whole university level course on it , but you are unable to allow yourself to enter that truly relaxed state and be present in the moment. Rewiring your brain to live in this peaceful, present state *in the moment* is the key. To accept, to be present with, to let go. Knowing what it is and the theory behind how to achieve it is not the same as actually entering it. I know this is much much much easier said than done, I used to catastrophize about everything. The number of times I went to the hospital for something that ended up being nothing is frankly just crazy to me now!

Are you engaging in a regular meditation practice? I highly recommend meditating daily, at least 2 times if possible. I often use tracks from a CD called "Unplug" by Sharon Salzberg, she has written many books and is highly regarded as an expert in the field of "lovingkindness" or "self-compassion" meditation (which is a type of meditation that actually has been used in clinical trials for pain and anxiety issues). Some people also respond very well to doing Vipassana style meditation which is taught in courses all over the world (the courses are free for newcomers - you "pay it forward" by donating after the course if you are able to).

Another book that I have found more recently that has really helped me understand the role that our technology plays in our societal brain issues is Digital Minimalism by Cal Newport. I find that the less browsing I do (facebook, instagram, youtube, forums...), the better I feel.

Hope this helps! All the best for your recovery!
-Rebecca

 

Hello @westb

You're right in saying that "fear" becomes a part of your DNA, as it were. In fact, @Alan Gordon LCSW says in the TMS program that fear becomes its own neural pathway in the brain! So not only does our brain create brain-maps for the chronic pain and other MBS conditions, but it also wires itself with brain-maps for fear, anxiety, etc. I know this for a fact because sometimes I feel anxious or get a panic attack for no reason whatsoever. With my long history of chronic anxiety I've always been able to identify what set off a panic attack in me, but lately they seem to just come whenever, and for no reason! I now know this, however, and I tell Lizard (that's what I call my brain) to delete it (or shut it off). Yes, I talk to Lizard all the time. I know it sounds crazy, but this works for me about 80% of the time.

When I read about food intolerance being an MBS I knew this was spot on. When I first started on the low acid diet, it seemed I couldn't tolerate simple things like grilled chicken, eggs, and other bland foods that were NOT acidic! No wonder I lost so much weight. Then I'd go running to the doctor and he'd say there was nothing wrong with me; it's just IBS--and he could hear my intestines rumbling inside and the intestinal dismotility, which feels like this horrible pressure bloating (as if someone is blowing up a tyre inside you). There's no distension on the outside, it's like you have an alien inside, just like in the film "Alien". Yuuuuhhhhhhh! But as soon as he'd reassure me that there was nothing wrong with me, I was able to go home and eat a chicken sandwich without any side-effects. How's that for the power of the mind?

So now I'm experimenting with all sorts of foods, gently and slowly. I eat chocolate, and I never go without my coffee! I try different foods and see how I feel, but before I eat anything that I'm wary of I tell Lizard not to get its "knickers in a knot". One must never eat when feeling fear because that's a sure way to fail, and make one feel sick. By the way, watermelon, which is considered a high FODMAP food for IBS sufferers is something that I've always been able to eat without any problem. In fact, a lot of what I eat is high FODMAP and it never affects me, so this debunks the low FODMAP diet for me. I really believe Dr Schubiner is correct when he says food intolerance is MBS--I figure if you believe that something's going to make you sick, it will. The only thing I did do, however, was to check for Celiac (Coeliac in Aussie spelling) disease, and I don't have this, thank goodness, because I live off carbs. I love them and always will. I eat the healthy carbs, though, and not rubbish.

Good luck in your journey toward health. I am sure you will get there. We are all on our own journey and we have to do what seems right to each of us. I am of the opinion that what works for one person may not necessarily work for another; therefore, we must travel on our own road to discovery and health as if we were pioneer explorers going into virgin territory!

 

Hello @Rbka

It sounds like you've made wonderful progress. There was a time when I lost all my fear of PN and I was actually feeling better for a while, that is until I started to get new symptom variations in my flare-ups, and all the fear came back. At the same time, I also had to deal with everyday life: financial issues, isolation, other stressful problems, including trauma, plus the emergence of silent reflux (another TMS condition as it turns out) and the re-emergence of IBS.

I live alone (with a naughty kitty for company) and it's been a rough journey for me so far. In summary, the PN developed shortly after my mother passed away (I was very close to her); then my now ex-husband left me (when I got sick with the PN, that is). As a result, I lost my home and a lot of my own money, and I came away with very little except pain and more pain plus fear and anxiety. Not having any other family, except a brother with a very domineering wife, I didn't have too much support from that quarter, and many people who I regarded as friends disappeared from my life too. So I've been living with this whole thing on my own and trying to keep it together. I was working for a while, but eventually that role became redundant, back in 2015, and since then I've struggled to find new work that would at the same time enable me to fit in the physical limitations of working with PN.

I've always relied on my own research skills regarding health conditions. This is both good and bad. Sure, it can put all sorts of ideas in your head, but the good side is that I managed to diagnose everything I have, including the PN, without going for invasive tests or seeing ten different doctors with ten different opinions. I believe this gave me some measure of control in my life.

Meditation is something I tried many times, and in many guises, over the years (even before the PN thing), but it doesn't seem to work for me whereas focus works better, and so I have been focusing on the present a lot more (without the catastrophising), plus I am able to recognise thoughts and emotions for what they are--triggers for PN flare-ups (or I should say for any flare-up, even IBS). I discovered there is no such thing as physical triggers in PN; they are all emotional (at least in my case), and this is what Dr Sarno and others have been telling us for years.

I used to fall into the trap of thinking that because I vacuumed, or went up the stairs while carrying two shopping bags, or sat in a certain way, etc, etc, this was the trigger for my flare-up, but it was never then case. It took me years to start noticing the emotions prior to a flare-up, and sure enough this is what led to the flare-up in the first place. I mean, how else could I explain that sometimes I vacuumed and DID NOT flare up, and I could sit for hours at the computer and I'd be fine, or sit on chairs without my special cushion, or go for long drives when at other times I could only handle 5 minutes and then I'd flare up, etc. It just didn't seem to correlate with my flare ups. But emotional upheaval seemed to fit the bill all the time (without fail), and this could be fear, anxiety, anger, frustration, problems with my brother (this one's a biggie for me), financial problems, etc, etc; all these things consistently flared me up. And to top it off there are memories from the past and trauma that sometimes rise to the surface and generate emotions of sadness, regret, love, hate, etc, etc; and these, too, have the power to flare me up.

So this is the reason I work with two things now: the brain-maps (in order to rewire the brain) and catching the emotions/feelings. By "catching" I don't mean I have to dwell on them; it's more noticing that an emotion or feeling has come up, merely observing it without judgement, and letting it go. This is very much what Eckhart Tolle teaches, and I find this works for me better than meditation. Being in the moment is something else I practise a lot more of these days. I am in the moment with nature, when I play the piano, when I write fiction, when I get to spend time with my niece, when I have coffee with a friend, etc, etc. All the "strategies" I have in place in order to "stay in the moment" take time to nurture, I guess. I've read the success stories of how some achieve recovery quicker than others, but at the end of the day everyone is different as we've all suffered different traumas, experiences, and what makes us what we are today, etc.

Stay well. It sounds like you've done great!

 

Many thanks for posting this, Syl. I've put it on post it notes at strategic places around my house for me to read and remind myself. I like the way it sums it all up in a nutshell - excellent!

 

Hi @BloodMoon, I'm glad this helps. I posted it on my fridge and by my computer so I can see it all the time and remind myself that I mustn't give up!

 

Hey these stories of pelvic healing are so inspiring. I’m walking the path myself and am undoubtedly improved but still frequently uncomfortable when not in the middle of a (now less frequent) pain flare up.

Does this track with those of you who have healed? I’m talking tightness or the feeling of something stuck up there. Pain is so much better at least. That obviously is a big deal. Should I have hope that I can get back to feeling like myself again?

 

Hello @tmstraveler

The answer to your question is YES! But do not hope, just KNOW that you will feel better, and this will happen when you get to the point where you simply get on with your life "despite" the symptoms (I know it's easier said than done, and trust me, I struggle with this too sometimes). Dr Schubiner says that even after we start feeling well again there will be times that we may feel pain or a flare up coming on, but we will recognise this a lot sooner and know it's TMS, and instead of becoming afraid we'll simply dismiss it and our reptilian brain will just have to shut up as it realises that we're not going to take any more nonsense from it All your sensations, whether they're perceived as pain or strange sensations are still TMS. I can well relate to what it feels to have that sensation of tightness or like a golf-ball stuck up there (I'm referring to the pelvic pain now), but this went away when I started to ignore it for real. I wasn't pretending anymore, I really meant business--which meant that I said to myself: "Ok, so there's the sensation. So what?" And then I got on with the rest of my day.

When I started to feel better, however, the IBS kicked in big time with its own horrid symptoms (and I've had over 30 years of IBS, but never like what's happening now), but this is consistent with how the reptilian brain works; once you lose your fear of something it will pick on some other condition in order to scare you. I've just had an email from Dr Schubiner in reply to my question to him, which was exactly this: that the IBS and functional dyspepsia went crazy, and that the pain and the awful sensations moved around a lot and they were on and off, and sometimes they'd switch off abruptly only to move to another part of my tummy. So I asked him whether I was dying! He reassured me that I wasn't dying and that this is the true nature of TMS. And so I'm now trying to ignore my latest symptoms. It's this crazy brain...

 

Thank you so much, @Syl. It’s very kind of you to take the time to talk to me and encourage me. Candidly, I look for reassurance online more than I should, but it’s nice to hear from people who got past very similar symptoms using the same techniques I’m using right now—mostly the Alan Gordon approach. It’s a welcome motivational boost and I deeply appreciate it.

And let me just say CONGRATS for coming as far as you already have. That’s amazing. You’re so strong to stay in this and I’m incredibly impressed that you’ve got the will to do what has to be done mentally to get your body back to feeling like itself again. I know first-hand how hard that can be and you deserve all the credit in the world for your perseverance. I’m glad you’ve seen positive changes and even the flaring of other symptoms is it’s own mark of progress. That means you are affecting change and can KEEP affecting change. You are on the right path.

I’ve made progress in my own journey. I need to remind myself of that. It’s taken me a while (as it as for so many) to embrace the concepts of TMS, but over the last month I’ve been moving forward in earnest—shifting my focus from fear and avoidance to confidence and exposure. I, too, have been punished for it as the pain initially pushed back. Hard. But now I have parts of my day that are reliably much better than before (mornings and evenings) and am actually getting some sleep. I work to believe that if I can maintain my confidence and cultivate a true attitude of calm acceptance, I can keep my progress going and eventually go all the way.

After so many treatments and so much pain, it’s amazing to think that we hold the power to heal in our own hands, but the results speak for themselves. It’s truly astonishing.

These symptoms are indeed tricky and when you stop fearing one, another vies for your attention. I will bear that in mind as I keep going. Thank you again for confirming that what I’m feeling can still fall under the TMS umbrella and that it can be beaten with a mind/body approach!

 

Hello @tmstraveler

The fact that you're getting parts of your day when you are not in pain is a good sign. This is similar to what happened to me in regard to pudendal neuralgia (PN). But don't congratulate me yet, as I am now struggling with my gastrointestinal symptoms, which are a real challenge, I must say.

My main problem with the IBS/FD (functional dyspepsia) is that new symptoms are springing up all over the place, which I never had with the old IBS I've suffered with for most of my life. I now have upper gastrointestinal symptoms such as tightness of the diaphragm muscle, nausea, dysmotility around the loops of the bowel, early satiety, reflux that feel like I just swallowed some Vicks Vaporub, globus, and some other strange sensations.

My biggest fear, however, is that I will lose more weight, and this is where it gets tricky for me. You see, when I had silent reflux (LPR), which started in late 2017, I went on a low acid diet and lost 12kg (approx 28 pounds) in the space of 1.5 years. This is considered healthy weight loss (as my doctor said), but I was already within a healthy weight range at the time, so now I'm super slim to the point that I lost some muscle mass! I went from around 63kg (138 pounds) down to around 50-51kg (110 pounds). And so now I am under pressure, knowing that I have to keep eating in order not to lose any more weight as I'm at the other end of the healthy range. If I lose any more weight I'll be underweight.

I'm 163cm in height (5'3 ft) and the healthy weight range is from around 64kg to 49kg. My latest symptoms make it difficult for me to eat at times plus I am still struggling with food intolerances that have sprung up out of nowhere. The times when I get symptoms move around a lot and the symptoms stop and start abruptly and they change (they don't all come at once). So there are days when I'm symptom-free and I could eat a horse and days when the thought of eating gives me a huge amount of fear because it will bring on the most uncomfortable symptoms--and sometimes the symptoms come on even if I haven't yet eaten anything! This happened to me this morning, prior to breakfast. I felt some dysmotility and nausea, but I still forced myself to eat.

So you can see how I think maybe I have some insidious disease and I'm dying. Anyway, this is what I wrote to Dr Schubiner about in my latest email. The poor man must think I'm insane! But he's a lovely man and he replied to my email, which I share with you below because it can help us all to reinforce just how tricky the reptilian brain can be.

This is what Dr Schubiner said:

"Yes, actually I think that the shift in pain from the pelvic region to the abdomen is a good sign; and the fact that the symptoms are shifting all over the place is also good. It further confirms for 100% that this is TMS; now there is absolutely no doubt.
Your brain is saying: "Look at me, see what I can do to you!"
And your job is to know this and stop worrying that you are dying, which you aren't.
The problem is fear and as you work to calm your brain from fear, you will feel better.
Best, Howard"

Howard Schubiner, MD
Director, Mind Body Medicine Program, Department of Internal Medicine, Providence-Providence Park Hospital, Ascension Health, Southfield, Michigan, USA
Clinical Professor, Michigan State University College of Human Medicine


I like it where the brain says "Look at me, see what I can do to you!" and this is where I would like to say back: "Don't tempt me, because I have the power to put an end to you!" Of course this would mean extinguishing life, which I'm not prepared to do just to please my brain and let it win! (I can get morbid at times, so please forgive me). The good thing that comes out of this threat is that when I sometimes do say it out loud to my brain, it sometimes cowers and stops the symptom abruptly. Therefore, threating Lizard (my reptilian brain) with true violence can work. The whole point of this is that we are truly engaged in a kind of battle with our brain--one which we cannot afford to lose. And so it's good to have a community like this one, where we can take inspiration and encouragement from fellow sufferers and give the same kind of support in return. I mean, if I went around telling this kind of thing I discuss here in the forum to people who don't have TMS, they would really put me away!

This is why I am grateful to all those people who share their story and those who also give of their time to help us, such as Alan Gordon, Dr Schubiner, and others.

I hope I didn't bore you with this post, but I had a lot to say this morning

You're definitely on the right track, and you will get better. The time frame to healing differs for all of us and for some of us the brain comes up with new symptoms, which is most rude if you ask me! But what else can we do, except keep on fighting this battle?

 

Well, Syl, you’ve overcome so much already so I WILL congratulate you. You are strong and can keep going and get past where you are now. You’ve already demonstrated the power you have over your situation and I have no doubt that you will continue to work and find a way to navigate this new manifestation of TMS until it too is a memory.

 

Thank you. I hope you are right, and I also hope my brain will stop throwing more symptoms at me. I just wish to get on with my life. I wish you all the best on your journey and that you may heal soon too!

 

Mi historia de dolor pelvico comienza con un cuadro de hemorroides, luego de varios meses con molestias, fui a un servicio de urgencias y me ordenaron una hemorroidectomia. Luego de este evento, el dolor se incrementa y empieza mi travesía por buscar una respuesta a mi dolor. 6 amarres de hemorroides, una esfinterotomia, Resonacias magnéticas Tesla, electromiografías, cerca de 20 sesiones de Terapia neural, 6 bloqueos al nervio pudendo, fisioterapia etc. Nada sirvió...el ultimo diagnóstico segun la resonancia magnetica, atrapamiento de nervio pudendo. Hace 3 meses conocí de el Dr John Sarno por un paciente de España de dolor pélvico que había encontrado la cura. Tuve contacto con el, adquirí libros, información, estoy comenzando mi tratamiento con la Dra Encarna Espuña de España. En el poco tiempo aunque el dolor no desaparece, he logrado disminuirlo, ser mas activo y ser consiente de mis emociones. Empiezo este camino y espero recuperarme pronto y volver para contarles mi historia completa.

 

Hola, disculpa pero como te fue?

 

What a story! You're doing great.