Pelvic Pain....Need some encouragement.

[MissShamrocks]

I've been working with an amazing TMS therapist for a few months now. I'm finally grasping the "this is TMS" and nothing else theory and doing some graded exposure. I've been getting out more and trying to get over my fear of sitting, because my brain has decided that making my genitals, sit bones and hamstrings feel like they are being set on fire when I do so, is a fun game (ha ha)

I had to attended a funeral yesterday and I was hoping I could stand in the back during the chapel part of the service because I knew they had wood bench seating and that's taking the sitting down too far for me right now. Well, there really was no where to stand, so I sat near the exit knowing that if it got too bad, I'd go stand outside. I had taken a tramadol and wore lidocaine patches on my sit bones beforehand and they came in handy. I sat there VERY nervous at first, but I kept telling my brain, "You are safe, sitting does not equal pain, etc" I actually sat there for about 30 mins before I stood. I was so impressed and felt so amazing even though I wasn't able to sit the whole time.

On the drive home I was elated because I wasn't in too much pain.....until today. I cannot describe how much I hurt today. I'm wrestling with my brain and body and I'm a bit frustrated that this pain relief isn't coming sooner like some other TMS'ers. I'm curious how long it took for other pelvic pain Tms'er to get rid of it and how they went about it?

I realize we are all individuals and each story is different, but curious none the less. This retraining the brain is much harder than expected.

 

[pilatesgirl]

Miss Shamrocks,
Don't be discouraged! Continue to accept, allow and let time pass. These positive experiences will build on each other. I definitely had good moments, hours & days only to have the pain return later in the day or the next day. This I believe is part of the process.
It can take several months to completely calm the central nervous system. While I was healing I had over two months pain free then had a flare that lasted a month. I was very frustrated but I also knew that it went away once it will go again. I started to allow the symptoms without adding tension/fear once again. It's that second fear or added tension that continues the pain cycle.

I like the self-talk you gave while you were sitting in the church. One of the things I would repeat to myself was "allow the pain to be there." "It's your nervous system, not an injury".
In the beginning when I was just starting to accept and allow I would need to physically release tension by allowing my posture to slump sitting or standing. Claire Weekes talkes about this in her book. I couldn't believe how much extra tension I was holding in my body. I was constantly bracing from the pain and possibility of pain.

Give youself breaks too. I took daily naps that helped me get through the day. It is hard work but continue to allow and you'll get there.
Xo,
Julie

 

[MissShamrocks]

Thank you for replying, Julie! I remember messaging you and feeling so much hope after hearing your story. I like the "It's your nervous system, not an injury"...I will add that to my affirmations when seated. I started to read Claire's book but couldn't get into it. I think I may try again because I know a big part of this for me is anxiety and I remember you saying it helped you a lot. I'm glad you are out of pain. How long has it been now?

 

[pilatesgirl]

Hi again! If you add the months before the flare up then it's been almost 4 months. The flare was totally related to negative thoughts
And overreacting to a brief symptom. I freaked out (for lack of a better term) and resensitized my nervous system. It completely makes sense. I had only been pain free for a couple months when the flare occured and my fear of the pain returning was still so high.
Claire Weekes is genius at explaining the nervous system. Her books are dated but the message is timeless. Try the book again. I would replace my symptoms for the ones she described in her book. You can also try her audio of the book. She has a soothing voice. I did both. I was also familiar with her
As she helped me heal from anxiety and OCD in the past. Give her words some time to sink in. Keep practicing. Practice with patience and not tension. It takes time. Allow it to take all the time it needs to heal. Try not to look at the clock or calendar. Live your life alongside the pain.
I would sometimes think of the pain as a spoiled child looking for attention. The child quiets down once you ignore their negative behaviors.
By allowing you are ignoring the spoiled child and overtime the pain will be less and less until it's gone.

Yes, it is exhausting at first but it WILL get better!
Xo
Julie

 

[Mala]

Hi MissShamrocks Julie has given u some great advice.

TMS healing like any other healing is never linear. U will have a lot of ups & downs. Its awful when u have a down day like u mentioned the one u had after going to church. There can be many reasons for that. One of the reasons may be that unconsciously u r expecting the pain the next day becoz u know u overdid it the day before. Funny but the mind does work in mysterious ways.

Second I believe that most pelvic pain is mainly muscular in origin and when u are using the muscles like u were by sitting for a longer period than usual then the pain u have may be due to just using those muscles-something perhaps they haven't been used to. Just like when u go to the gym after a long time boy do u ache the next day. Give it some time to pass & try not to fear it. Have u noticed how tense that whole area gets? I used to find myself clenching my thighs & so I consciously had to try to relax that whole area & breathe deeply into it.

Also in chronic pain nerves form pain pathways which become hypersensitive. The original injury or trauma if there was any may have healed but pain signals are kept alive by fear & by constantly tensing yr muscles. By calming yr nervous system & believing that there is no real serious injury you can begin to ignore the pain signals & over time the signals to yr brain will stop misfiring.

I suggest u keep doing what u r doing, celebrate yr successes & remember them when u r in pain. Also when u have a flare up, make yrself comfortable anyway u can. Soak in some warm water with epsom salts, take some pain medication to get over the flare up & do whatever u can to try to divert yr attention from the pain

It may be difficult I know but with time & practice u will have more & more better days .

Good Luck

Mala

 

[MissShamrocks]

Hi again! If you add the months before the flare up then it's been almost 4 months. The flare was totally related to negative thoughts
And overreacting to a brief symptom. I freaked out (for lack of a better term) and resensitized my nervous system. It completely makes sense. I had only been pain free for a couple months when the flare occured and my fear of the pain returning was still so high.
Claire Weekes is genius at explaining the nervous system. Her books are dated but the message is timeless. Try the book again. I would replace my symptoms for the ones she described in her book. You can also try her audio of the book. She has a soothing voice. I did both. I was also familiar with her
As she helped me heal from anxiety and OCD in the past. Give her words some time to sink in. Keep practicing. Practice with patience and not tension. It takes time. Allow it to take all the time it needs to heal. Try not to look at the clock or calendar. Live your life alongside the pain.
I would sometimes think of the pain as a spoiled child looking for attention. The child quiets down once you ignore their negative behaviors.
By allowing you are ignoring the spoiled child and overtime the pain will be less and less until it's gone.

Yes, it is exhausting at first but it WILL get better!
Xo
Julie

I'm thinking maybe the audio book would be better! Thank you for the suggestions. So glad you are better! You give me hope!

 

[MissShamrocks]

Hi MissShamrocks Julie has given u some great advice.

TMS healing like any other healing is never linear. U will have a lot of ups & downs. Its awful when u have a down day like u mentioned the one u had after going to church. There can be many reasons for that. One of the reasons may be that unconsciously u r expecting the pain the next day becoz u know u overdid it the day before. Funny but the mind does work in mysterious ways.

Second I believe that most pelvic pain is mainly muscular in origin and when u are using the muscles like u were by sitting for a longer period than usual then the pain u have may be due to just using those muscles-something perhaps they haven't been used to. Just like when u go to the gym after a long time boy do u ache the next day. Give it some time to pass & try not to fear it. Have u noticed how tense that whole area gets? I used to find myself clenching my thighs & so I consciously had to try to relax that whole area & breathe deeply into it.

Also in chronic pain nerves form pain pathways which become hypersensitive. The original injury or trauma if there was any may have healed but pain signals are kept alive by fear & by constantly tensing yr muscles. By calming yr nervous system & believing that there is no real serious injury you can begin to ignore the pain signals & over time the signals to yr brain will stop misfiring.

I suggest u keep doing what u r doing, celebrate yr successes & remember them when u r in pain. Also when u have a flare up, make yrself comfortable anyway u can. Soak in some warm water with epsom salts, take some pain medication to get over the flare up & do whatever u can to try to divert yr attention from the pain

It may be difficult I know but with time & practice u will have more & more better days .

Good Luck

Mala

Hi Mala! How are you feeling these days? You are right about this not being linear. I make small improvements and then seem to take a step back, etc. And you're right, I probably was expecting the pain to follow. I've been told I have tight pelvic floor muscles but not the worst they've seen. I asked my PT if she would be in as much pain as I am if she had my muscles and she said no. She believes it's the output of my nervous system and that includes psychological. As any pelvic pain patient knows, this is the pits. Not to say that other types of pain aren't bad but gential pain is really awful.

I keep telling my brain that it doesn't need to send pain signals anymore, that I am not in any danger. I guess it just takes awhile for the brain to catch on. Thank you for your reply!

 

[Alysa]

Miss Shamrocks, I'm rooting for you. Please let me know when you overcome. I've also been told my pelvic
muscles are two to three times tighter than they "should be". It makes restroom visits diffucult and a source of stress. Have you tried yoga? I found it helps when I'm able to do it. As I am still feeling like I'm at the beginning of my recovery journey I am sorry I can't offer you a simple success story. Hopefully soon we can swap stories of comfort and triumph!

 

[Walt Oleksy (RIP 2021)]

Sometimes I think my brain only listens in Polish or Greek, and I speak neither.
When I pray to God to relieve pain or stress and I don't get immediate relief, I think His computer is down.

I just keep going, like the Duracell battery. I'm almost 85 and nothing is going to stop me. haha

Most of the time, I feel fine. I stay positive, believe in TMS, do deep breathing, and laugh.

Last night I dreamed I was renting the upstairs apartment in my house to awful tenants with noisy kids,
but I don't have a second floor to rent, my house is a ranch all on one level.
I woke up thinking how lucky I am.

 

[MissShamrocks]

Miss Shamrocks, I'm rooting for you. Please let me know when you overcome. I've also been told my pelvic
muscles are two to three times tighter than they "should be". It makes restroom visits diffucult and a source of stress. Have you tried yoga? I found it helps when I'm able to do it. As I am still feeling like I'm at the beginning of my recovery journey I am sorry I can't offer you a simple success story. Hopefully soon we can swap stories of comfort and triumph!

Hi Alysa,

Thanks for reaching out! I'm hoping we will be swapping those success stories very soon as well! As of right now, it's difficult for me to stretch my hamstrings without flaring my sit bones and V, so I will be working on building up to that! I cannot wait until I can do those pain free! Have you been diagnosed with IC or do you have Levator Ani symptoms?

 

[Alysa]

Levator Ani. Still trying to figure out what helps and where to begin!

 

[MissShamrocks]

Sometimes I think my brain only listens in Polish or Greek, and I speak neither.
When I pray to God to relieve pain or stress and I don't get immediate relief, I think His computer is down.

I just keep going, like the Duracell battery. I'm almost 85 and nothing is going to stop me. haha

Most of the time, I feel fine. I stay positive, believe in TMS, do deep breathing, and laugh.

Last night I dreamed I was renting the upstairs apartment in my house to awful tenants with noisy kids,
but I don't have a second floor to rent, my house is a ranch all on one level.
I woke up thinking how lucky I am.

Your positive outlook and humor always makes me smile Walt! 85 and still doing good! Yes, you are blessed!

I've been in a much better place emotionally for the last two days. Saying affirmations of good health and a peaceful mind. It really does make a difference!

 

[MissShamrocks]

Levator Ani. Still trying to figure out what helps and where to begin!

Are you seeing a PT or just doing TMS work?

 

[Alysa]

I saw a PT for a week while out of town on vacation. I live in the middle of nowhere so PT isn't even an option until my daughter is done nursing and I can get a little farther from home. Just TMS work right now but I'm still having some trouble accepting that my mind did this. It is torture. I've been doing yoga and trying to calm my sympathetic nervous system. With a two and a half year old and a high needs nine month old, calm is a hard thing to cultivate. I am entirely open to hearing any TMS tips you have for pelvic pain!

 

[MissShamrocks]

I saw a PT for a week while out of town on vacation. I live in the middle of nowhere so PT isn't even an option until my daughter is done nursing and I can get a little farther from home. Just TMS work right now but I'm still having some trouble accepting that my mind did this. It is torture. I've been doing yoga and trying to calm my sympathetic nervous system. With a two and a half year old and a high needs nine month old, calm is a hard thing to cultivate. I am entirely open to hearing any TMS tips you have for pelvic pain!

I can relate. I didn't completely "get" how my mind could have caused this but the more research I do on the mind/body connection in a physiological way that made more sense to me. I needed that "physical" component to totally believe in it and I'm feeling much more secure in my belief now. I can send you some links to a few videos I liked if you'd like?

I am also working with a TMS therapist which has been a great help. Is that something your interested in exploring? I also read Dr. Shubiner's book "Unlearn your pain", it makes so much sense. It includes a workbook and a CD that has meditations on it. If you sign up for the 30 day trial kindle unlimited app (it's free) you can read the first 5 chapters for free, to see if it resonates with you or not before you commit to buying the whole book. Those are my TMS so far, haha!

 

[JoelH]

Hi MissShamrocks,

I've been a long time sufferer of CPPS myself. I understand how daunting this can be. I've spent many of days, dollars and the like trying to alleviate all physical symptoms in nearly anyway possible (short of surgery - thank God).

There have been great strides forward, and desperate steps backwards. Every range of emotion from elation to suicidal tendancies. The secret (I believe) is in the search. This, like anything else worth discovering, is a long and winding road.

I ultimately have come to this forum and Dr. Sarno's book(s) feeling as hopeless and helpless as I'm sure you and nearly everyone else on this thread is. When you've reached out in search of any answer, and derive countless diagnosis from countless 'professionals', it weighs on you. Or the ever deflating 'you must learn to live with the pain'. Talk about rage!!

I, like you, and many others on this forum, have found that the best doctor I have in my life is myself (at least in matters pertaining to my pain). I think we're all here because we know there's something more to this. Something deeper than just simply a physical malady. I'm sure you've heard (like all of us with CPPS had) that this is an anxiety, type A personality syndrome. Which ties in nicely to Dr. Sarno's teachings. However, it just doesn't go deep enough. To know it's anxiety is one thing, but to better understand the cause of this anxiety and it's manifestations in the physical body...therein lies the magic.

I've only been on the TMS forum for a short time. However, I feel grateful for the opportunity to really take my health and well being into my own hands. Hopefully you do too. As one of my favorite lines from one of my favorite songs suggests "I am my own damn God".

Love and light

 

[575]

Found this thread because I just had a bit of pain (the famous occasional flare up).
I had Butt Pain for about 1 and 1/2 years, I think I had the same problem as you, the feeling that you're sitting right on the sitting bones.
Took me about 6 months or so to 99% health but you'll see the improvements during that time (if you even need that long).
But here is my personal advice, DON'T THINK ABOUT HOW LONG IT WILL TAKE and most importantly, my Nr.1 advice IGNORE THE PAIN - NO MATTER WHAT.
Sometimes it feels like a thousand knives in my butt cheeks and I begin to sweat slightly but don't even think about it and DON'T WORRY, DON'T THINK ABOUT THE PAIN.
The key is to live normally, it's not a real injury, you're not in danger. Don't try hard to get rid off it, because only then it will go away - when you stop caring about it.

EDIT: I just wanted to add that my last part is basically the only important part. Live normally. That's simply everything you have to do. You are already in good health.

 

[MissShamrocks]

Hi MissShamrocks,

I've been a long time sufferer of CPPS myself. I understand how daunting this can be. I've spent many of days, dollars and the like trying to alleviate all physical symptoms in nearly anyway possible (short of surgery - thank God).

There have been great strides forward, and desperate steps backwards. Every range of emotion from elation to suicidal tendancies. The secret (I believe) is in the search. This, like anything else worth discovering, is a long and winding road.

I ultimately have come to this forum and Dr. Sarno's book(s) feeling as hopeless and helpless as I'm sure you and nearly everyone else on this thread is. When you've reached out in search of any answer, and derive countless diagnosis from countless 'professionals', it weighs on you. Or the ever deflating 'you must learn to live with the pain'. Talk about rage!!

I, like you, and many others on this forum, have found that the best doctor I have in my life is myself (at least in matters pertaining to my pain). I think we're all here because we know there's something more to this. Something deeper than just simply a physical malady. I'm sure you've heard (like all of us with CPPS had) that this is an anxiety, type A personality syndrome. Which ties in nicely to Dr. Sarno's teachings. However, it just doesn't go deep enough. To know it's anxiety is one thing, but to better understand the cause of this anxiety and it's manifestations in the physical body...therein lies the magic.

I've only been on the TMS forum for a short time. However, I feel grateful for the opportunity to really take my health and well being into my own hands. Hopefully you do too. As one of my favorite lines from one of my favorite songs suggests "I am my own damn God".

Love and light

Every word you just typed reads SO true for me (and probably every pelvic pain patient I know) and yes, it all creates so much rage. We are all our own best Dr's that's for sure! Where are you in your TMS recovery?

 

[MissShamrocks]

Found this thread because I just had a bit of pain (the famous occasional flare up).
I had Butt Pain for about 1 and 1/2 years, I think I had the same problem as you, the feeling that you're sitting right on the sitting bones.
Took me about 6 months or so to 99% health but you'll see the improvements during that time (if you even need that long).
But here is my personal advice, DON'T THINK ABOUT HOW LONG IT WILL TAKE and most importantly, my Nr.1 advice IGNORE THE PAIN - NO MATTER WHAT.
Sometimes it feels like a thousand knives in my butt cheeks and I begin to sweat slightly but don't even think about it and DON'T WORRY, DON'T THINK ABOUT THE PAIN.
The key is to live normally, it's not a real injury, you're not in danger. Don't try hard to get rid off it, because only then it will go away - when you stop caring about it.

EDIT: I just wanted to add that my last part is basically the only important part. Live normally. That's simply everything you have to do. You are already in good health.

@575 - Congrats on being 99% better! That is amazing and I bet it feels fantastic to be able to sit without pain. I have a few questions for you if you don't mind....

Did you take meds for the pain? Did you work with a TMS therapist during that 6 month period? Did you do anything (meditation, journaling, etc) besides just living life as if the pain didn't exist?

 

[JoelH]

Every word you just typed reads SO true for me (and probably every pelvic pain patient I know) and yes, it all creates so much rage. We are all our own best Dr's that's for sure! Where are you in your TMS recovery?

I am only new to the entire TMS forums, and have only recently discovered this 'next step' (you can read my First Post which I submitted yesterday - will give you a better idea of where I'm at) recently. I've known for many of years that I would eventually need to meet my demons head on (pun intended). I've spent many years self-medicating, with nearly every illicit drug under the sun (self-loathing and self-hatred have been my two closest companions since I can remember).

When I really look at matters, I've been suffering from instances like this most of my life. Suffered from migranes as a child. Anxiety attacks in my teens. Deppression and suicidal tendancies in my 20's, along with constant neck pain. My 30's have brought on the CPPS.

This is really a battle of the mind versus...well, the mind. Concious vs. Unconcious. I live in Canada, on an island on the west coast, so I don't have any access directly to any TMS therapists here. This is ultimately been a discovery via a grandious process of elimination (not to mention my inability of finding a Dr or any practitioner who gave any sort of damn about my pain).

I've found that meditation helps. I've begun yoga so as to try to somehow connect my body to my mind. Prior to this, I was never much in touch with my body in any way shape or form (I suppose a slew of drugs used to mask the pain will do that to a guy). I've spent my entire life 'in my head'...ironically, never really addressing or acknowledging the bubbling pain/anger that was trying its damndest to find its way out. Yoga does help, in that it's calmed my mind enough to be able to negate going into full 'panic' mode.

Other than that...I'm sure it's like anything else in life. Sometimes a little blind faith goes a long way. I have nothing to lose. And ultimately no one who will give a damn about me, aside from myself.

This is a test. A test for those who deserve a life better lived. Life in pain is no life at all. When we hit our bottom, what else do we have? I hit mine not long ago, and thus...I find myself here.

But I am a new man from this pain. And am thankful (who knew?)for my pain. It has opened new doors, as well as closing self-destructing doors that I've rejected closing long past their due date.

We'll get there. There is hope. Cause hell, if we don't have hope...we just have pain. I'll take the prior...any day!