Pain is a Loop

Just a short thought that I knew from books and have then been able to demonstrate in my own life: pain is a loop. Meaning, if there are many areas that aren't working right in your body or mind that cause pain, reducing one area may help the other areas improve. Easier said than done, right? But this may be something you want to "inventory" for yourself: "So, if I can't get the vestibulitis under control, is there another area that I can address?" Examples are:

• Allergies
• Hypothyroidism
• Mood problems (in my case, Bipolare 2 disorder)
• Nerve problems (see posts on nerve injections)
• Bladder problems
• Uterine problems
• Constipation (see post on my technique)
• Fibromyalgia
• Stress
• Unhappiness
• PTSD
• Mechanical problems with your body
• Fear of sex

For me, the most surprising thing that has helped the vestibulitis is staying on a diet that avoids my food allergies. One food I am sadly allergic to is chocolate. Chocolate cake will make the burning more intense the next day. Has this cured the vestibulitis? No. But any action I can take is worth it. Interestingly, the allergist said that my allergies are low-level. But avoiding problem foods seems to avoid additional inflammation. UPDATE 7/1/2015: After one year not eating chocolate without significant improvement, I am eating it again.

I take Allegra (Costco sells it least expensively) twice a day. I am also on Singulair to help my asthma, but it looks like it also may push back on allergies in general. Other allergy pills and preventive measures are out there.

Pudendalhope.info: Non-Medication Treatment of Pain

I pulled this off the web written by a pelvic pain patient about lifestyle changes without using medication.

Physical Therapy Continued...

I am now in week 5. The last two weeks have been biofeedback! Very challenging to get to a resting muscular reading. And that is lying down. I haven't figured out standing or walking. I am going to see if I can rent/buy a biofeedback machine for myself.

We are Kegel-ing which I never before understood because I was too weak to do it. Basic concept is to pull in your clitoris, vagina, and anus all tight. Then before you start shaking with weakness and lack of control, relax completely. Like really completely. This is perhaps more important than the Kegel itself - to get that release of the muscles of the pelvic floor.

She has a computer with a picture of a rose. The Kegel is trying to get the rose to close up and be a bud; the release is trying to get that rose as open and large as you can. I experimented with different thoughts: envisioning the rose, making my mind blank, thinking of my pelvic floor opening. The biofeedback machine gives you numbers as your muscle tension releases or increases.

Week 4
First session: Not great, but okay.
Second session: Pretty darn good, all things considered.

Week 5
Third session: Awful. Also, P.T. is taking away from my normal exercise/relaxation time so that is at odds. I am hanging in there, but hope to become more independent. If anyone knows of a biofeedback machine place, I am ready to rent or buy.

My psychotherapist and I will discuss "butt clenching" in our next session. The butt clenching, as I understand it for myself, is related to anxiety, mechanical instability and habit.

Physical Therapy Continued...

I have been in PT for 3 weeks now. An overview:

Week 1 (2 sessions) --
I didn't go in with this mind set, but the therapist focused on my bathroom habits. I had a chart to fill out of what I ate, drank, how much, how large my pee was, how often I pooped, etc.  to reduce "JICCING" meaning "just in case-ing" going to the bathroom. I learned that my "how to poop" back-up is called "splintting" medically (see my poop blog). Her point was that people with pelvic pain have weird bladder/bowel function.

Then the Q-tip test and looking at the balance of my hips and working on that. Also pressing around to find "trigger points" and tight fascia (fascia is the stuff that is white when you are pulling apart a chicken). I hurt later that day and for another day.

Week 2 (1 session) --
She introduced me to working on my transverse abdominus and Kegels. Transverse abdominus is a muscle that is shaped like a smile from one hip bone, scooping down to the pubis, and then scooping up. You activate it by breathing in and then making a hissing sound while trying to contract this muscle. Kegels are more vague to me. I tried. Both of these were incorporated into my normal P.T., meaning I did the same exercises, but tried to do the breathing/contracting. Oh!  I was in pain - worse pain than I have been in for a while going down my outer and inner legs and on my butt. Sitting became difficult again. I had the full-out sob-cry at home after it was still bad 5 days later. I cut doing the Kegels and transverse abdominus contractions and the pain slowly resolved.

Week 3 (1 session) --
I take charge of what I will and will not do. I had asked her her goals for me the week before and she had rattled off 18. That overwhelmed me. I talked to my therapist and then told my P.T. that the list was going to go down to two goals: getting my ankle working in the context of my pelvis and calming my nerve pain. Anything else is a bonus. I also told my P.T. I would no longer rank my pain on a numerical 1-10 scale and I would no longer participate in the pee/poop efforts. So there.

Something I had thought to ask for and had not yet done, was to do biofeedback. No previous therapist has done that and it seems like a very good idea for me. And it turned out that that was her plan for the day. She put the stickies on different pelvic floor muscles (externally, no in my vagina) and it measured electrical conductivity which is a measure of muscle contraction. "Wow, you are tight." No duh. But she had me watch the number while trying to relax. She put me in several different positions to see in what position I am the least tight (cross-legged for me) using the biofeedback machine. Then she had me try to Kegel. This time, there were two numbers. One for the Kegel and one for my overall muscle tightness. Up the Kegel number while maintaining the overall muscle number as low as possible. Didn't work out so well. My homework was to try to do a few Kegels and stop if I couldn't do it without involving my butt.

Finally, she taped my butt cheeks together to make my pelvis more stable and give some muscles support (this is in addition to the Serola sacral belt I always wear). The tape is 9" high and the lowest part of it is an 1 1/2" above the anus up to an 1" below the beginning of the butt crack. Guess what? No (or almost no) leg pain. So there is something magical about this taping for me. My husband has asked me how many days I am going to wear this bandage and the answer is as long as possible. It doesn't feel great, but is much better than burning pain. She used a special kind of P.T. tape and I will find out the name of it.

My ankle started behaving itself day-3 of wearing the bandage on my butt. I have been able to exercise everyday since I got the butt bandage.

As an aside, my psycho-therapist has asked me not to do web-research on vestibulitis when I am in pain. I get despondent, obsessive, and hopeless. No good can come of it she says. I say that this is when I am most motivated!

Back in Physical Therapy

I dislocated my ankle in July on a stupid little hike and went into physical therapy with a pt familiar with my pelvic woes. After a few months, she said that she had done all she could for my ankle in isolation, but that I needed to start pelvic therapy because the ankle problem was influenced by my unstable hips.

Bummer. On the other hand, hurting my ankle gave me the opportunity to work with the physical therapist on changing how and where I place my feet when I walk and learning about my pelvis in relation to my feet. It feels very odd. The "old me" walked with what I thought of as assertiveness - shoulders back, confident, long strides landing on my heals. Now I walk with my shoulders rolled into their natural position forward, my chin tilts down while I pull my head back and up (the book "Eight Steps to Pain Free Living" by Esther Gokhale describes the head placement well); I take smaller steps with the primary impact of my foot being right behind the ball of my foot. I feel sometimes like I am going to fall on my face because it is so different. But apparently this is the path to better mechanics and stability.

And, now I am with an awesome physical therapist Heather Rose at Palo Alto Medical Foundation. Realistically, I don't think I will be cured. The pain syndrome itself (vulva aside) has been going on for too long. But there are many ways we are focussing on improving my quality of life. Who new? More to follow...