Pelvic pain and burning thighs, any thoughts greatly appreciated.

Hello everyone. Long time lurker, first time poster. I apologize for the length of this post. I’m desperate for advice and thoughts from this community.

I’ve had pelvic/rectal pain off and on for many years. It had been tolerable in that I’d get remissions quite frequently where I had no pain at all. About 15 years ago a urologist pressed very hard internally on my prostate gland, following this I subsequently developed a lot of pain including cold and burning sensations in many areas. It has chronically settled into a burning sensation on my inner thighs whenever I experience a pelvic pain exacerbation. I had 5 years symptom free until 4 years ago when, while sitting on the floor and sliding a clothes dryer, I experienced in quick succession two non-painful spasms in my pelvic area. Over the next several days this event evolved into left-sided rectal area pain and bi-lateral burning inner thighs. It’s now been four years without remission and I’m very depressed. Of course every exam - MRI, MRN, etc. of both pelvis and spine have been normal. I’ve consulted with Drs. Schubiner and Schechter, though only by email, both believe I have TMS. My pelvic-physio claims to have seen more than 3,000 patients and he’s not had a patient who presented with burning thighs. I’ve given up cycling (which I love), and exercise as it sometimes seems to “painfully stretch my rectal area muscles" and make my symptoms, including the burning, worse. I’ve started seeing a TMS therapist but haven’t made any progress.

I’m having a lot of trouble believing my burning thighs is TMS, rather than some sort of induced neuropathic pathology (RSD, or similar) non-reversible pain syndrome that's biologically “hard wired” into my nervous system over which I have no control.

I feel desperate and lost. I hope to get some semblance of a life back. If anyone has any thoughts I’d greatly appreciate hearing from you.

Best,
JDSR71

 

Hi @JDSR71
Interesting you mention burning thighs.
I have a friend who had this symptom, along with anxiety and at times depression. At the time she refused to see a mind body connection, and neither did her doctors. They oblated nerves in her thighs, which meant a lot of PT to walk again. Since then she sees a m/b connection but has chosen not to walk that path and illnesses and injury have overtaken her life.
Your post really discusses symptoms, very focused on the physical and not tms yet you’ve emailed two of the world’s top Dr’s for unexplained pain.
What has held you back from participating and using the free tools here or participating in the tools both of those Doctor’s offer for help? It’s never to late to start, but asking yourself these questions in a free flowing journaling session would be a great way to begin. Generally we don’t go into much detail about symptoms here, we discuss the true cause of TMS. TMS is generally any pain that is chronic 3months or more and has no structural findings from a medical doctor -it does not matter the location or type of pain (or other symptom, for there are many). Lots of people experience a wide variety of bizarre symptoms:burning, stabbing, tingling, extreme tightening, spasm along with a fear and preoccupation of what these mean physically. It’s all protecting you from feeling emotionally -a form of psychological defense.
Since no medical Dr. has offered you a solution to wellness, you now need to decide how you are going to help yourself. The success forum is filled with stories of people like you who have done it.

 

Thank you so much Cactusflower, I much appreciate your sound advice! I think my biggest problem is that I’m still stuck in the body tissues model and having a lot of trouble convincing myself that it’s MBS. I suppose if all the imaging is negative for any muscle/nerve problem then what are you left with - seemingly it must be MBS. My doctor noceboed me with a comment that current MRIs (including my 3T version) might not be sensitive enough to detect subtle pelvic tissue caused related pain. I researched and found instances where women (approx. 10-35%) have experienced what’s referred to as a levator avulsion during childbirth where the levator muscles are significantly torn, though most do not have chronic pain! By comparison one would think my "non-detectable" levator problems should not cause pain. I don’t think I'm alone on the MBS model as I would think a number of people new to MBS have trouble becoming convinced that their symptoms are indeed MBS. Is this the essential thought process: if medical testing is negative then it must be TMS and a person should be “all in” to apply themself to the MBS model? Unfortunately, I’m having so much trouble making that leap. If anyone has any suggestions on how to get there it would be so helpful to me and perhaps to others who may have similar doubts.

 

@JDSR71
The best way to begin to alleviate doubt is by education.
If you have not, reading a book by John Sarno will provide some insight into how TMS works, he also outlines the personality aspects his clients had in common.
Deciding on your commitment to healing is central to healing. Will you continually seek external validation to heal, or can you begin to turn inward and find your own voice, to decide that you will be in control, make your own decisions and trust and support yourself?
Can you be kind to yourself? Slow down, realize that striving and seeking are anxiety and stress inducing.
Quite often, people reduce doubt by reading success stories, not just about your symptoms but about a wide array of oddities, which you will begin to see as pretty crazy, but that people often have other symptoms like fear, anxiety and panic in common. Beginning one of the two free programs here is also another way to begin to get a better grasp on what the “treatment” is for TMS, what you do, how to begin to recognize and change your thought patterns. All it takes is some time.
People tend to respond to the programs in a few ways: they begin to slow down, and notice feeling calmer. They may also notice a rise in anxiety, resistance to doing this work, or symptoms as your fearful mind tries to protect you from the thoughts snd feelings it fears. Or symptoms start to change, move, ease…any of these changes are a sign you are having a shift and your mind, body or nervous system are responding.