Has a doctor ever told you there was nothing wrong with you? That they could not find a reason for your pain and perhaps you should seek counseling?
Have friends or family members suggested that your “nervous personality” or anxiety are causing your pain and if you just “relaxed” you would feel better?
Has anyone ever rolled their eyes when you ask to be excused from traveling, attending an event, shopping, preparing dinner, etc. etc?
It drives me crazy — this idea that we are somehow responsible for our pain, that some deep emotional problem is manifesting itself as knives in our pelvis or burning and aching in our bladder. And if we just “buck up” or “relax” or work through our issues, we won’t hurt.
Because our disease is invisible, we are told by (well meaning) friends and family members to try all the holistic measures and “pain is in your mind” measures…. I know I tried art therapy, relaxation therapy a la “Headache in the Pelvis,” internal physical therapy to release “trigger points” and fix my tight pelvic floor (ha), neurostimulation to teach my brain to not feel the pain (ha), meditation to learn how to channel my brain waves to stay in the beta or theta or whatever place (ha). I even called a healer and had a session on the phone where I was told that there were people who wished me harm and were sending metaphysical knives at me, which was causing my pain…. And that I needed to establish a more solid boundary between myself and others (like if I went to the grocery store, I needed to guard against others negative thoughts seeping into my consciousness). The clincher was Dr. Sarno, who proposes that our pain is not real and, if we keep telling ourselves that, our brain will believe it. We just read to buy his book and read it to become free from pain forever. (Don’t get me wrong: If anyone HAS had success with any of these methods, that’s great! i am only putting this out there for those of us for whom they didn’t work.)
If I had cancer, nobody would have pushed those ideas at me. Like the good girl I am, I tried them all. For years. They don’t work. or at least, not for me. When I came across this phrase written by another patient, I put it up on my computer where I could see it every day:
“This idea that pelvic pain is the patient’s own fault is an outrageous and evil fraud.”
This phrase reassured me, and I needed to see it over and over because of the persistence of this kind of thinking. I was NOT responsible for my pain. It had happened outside of my volition. It was not because of some deep, dark, buried trauma from my childhood when I had been sexually abused, so I was carrying all the emotional pain in my pelvis! Believe me, I had looked for something like that to explain it! And it wasn’t there!
Once I found the key that released me from my pain — which happens to be an intrathecal pain pump with a magical mixture of bupivacaine, morphine and clonidine — it confirmed that it was a physical, not an emotional, event that caused my pain. Just like cancer or a stroke or any other breakdown of the human body, my event happened in the nerves on the left side of my pelvis, the same nerves that innervate the bladder and other organs. That’s why so many of us have concurring problems: PNE, IC, IBS. Over time, the pain, which may have started as a minor irritation, grows…. and grows…. and grows…. Mine took 20 years to grow into a monster. And that monster almost got me.
Now I understand that when pain is so ingrained in a person’s body, it is like a superhighway from the origin of the pain to the brain. It is called Centralized Pain. CRPS. Chronic Regional Pain Syndrome. This is serious pain. Doctors and researchers are only recently becoming aware that CRPS can happen in the pelvis just like it happens in our limbs. (That’s why ketamine works – it ‘reboots’ the brain.) NOTE: I am a layperson, not a doctor, and may not have explained this correctly, but the general concept is there.)
I hope this helps anyone who is suffering from this type of emotional abuse on top of their physical pain. We need to be relieved of the burden of thinking that we are responsible for our pain!
Power to the pelvis!!!