Thursday, 31 October 2013
First off, Happy Halloween! What a way to start mine off, with an 8:00am physiotherapist appointment! Oooooh scary.
But actually! It wasn’t too bad today. We got started on the fascial tissue massage on my thighs, and at first it was uncomfortable, but I did some deep breathing and really forced myself to relax, and to my surprise, I started to feel a sensation in certain parts where she was massaging, like a string being pulled at each end and then slacking. I suppose that would be the tension being released! It was an odd feeling, not a pleasant feeling, but definitely not painful or uncomfortable.
After my thighs she started to massage my buttocks (might be surprising for some, but I’m pretty used to random people seeing all my lower bits and pieces at this point). This was surprisingly not as uncomfortable as the leg massages and I feel like, I actually felt some of the tension release in my frontal-lower abdomen!
Finally she massaged one of my calves, which was pretty uncomfortable, and so she ended our appointment there. She then dropped a somewhat scary (yay for Halloween) bomb on me, by saying that in two weeks she’d be trying some eletro-biofeedback stimulation. I immediately tensed up, knowing that usually EEG biofeedback is usually done with a probe inserted into the vagina, holy moly no thank you. She quickly said that some physio’s use a probe, but she does not, she uses an exterior patch and it’s non-invasive – phew! Not so scary after all, but still a little nervous to see what that’ll be like, my first experience with EEG biofeedback, I’ll be excited to write all that up for you guys! ;)
Edit: for a couple hours after the appointment, I noticed a tingling around my vulva and deep inside I believe where my pelvis is, and also in my lower right abdomen. Not uncomfortable or painful, but tingling.
Today’s total: $40.00Grand Physiotherapy total: $170.00
Saturday, 26 October 2013
On Thursday I had my second physiotherapy appointment, we tried the myofascial tissue massage on my thighs again (which is all we did during the first appointment as well). The idea is to start massaging the trigger points that may cause pain. The trigger points are areas where a lot of our stress builds up. My first appointment was extremely painful, I was told my legs might bruise. They didn’t, but they felt bruised, actually… they felt like someone had punched my legs for four hours straight, they were tender for three days afterwards.
This time was much more pleasant. She uses a rolling motion on my muscles with her hands, and she focuses on only one small area at a time. These techniques can be done at home, although I found it really difficult because honestly, who likes hurting themselves? I started small, with gentle massaging, just getting used to my own touch on my thighs. Apparently it’s supposed to hurt at first, stretching the fascia tissue and muscles, especially the trigger points which are so short and tight from stress. Fascia tissue gets sticky when tense, and sticks to our muscle fibers, and pulling them back apart from each other starts off as pretty uncomfortable, but it’s nice to know everything’s getting put back in the place it belongs in my body.
I’m not certain how it’s supposed to help with my vulvodynia pains, other than releasing some stress points. She loaned me a book called “A headache in the pelvis” by David Wise and Rodney Anderson. A great read, although a little biased. But according to this book, supposedly there could be some trigger points inside my vagina, and the pelvic physiotherapist will eventually insert her finger to try and find and release trigger points inside. I am definitely NOT excited for this. It’ll be interesting to see if I find anything significant just from my legs being massaged/released, although I won’t know for sure as the CBT told me not to do anything more than a 3/10 on the pain scale.
The book also talked about the pain-anxiety cycle: you are stressed or have anxiety which builds up in your trigger points, which causes pain, and therefore causing more stress and anxiety and the cycle repeats itself. Obviously breaking this cycle is hard, especially when I even find the fascial massage painful and get stressed and anxious about it!
I believe these are the kinds of things I’ll be working on with the sexual cognitive behavioural therapist, how to change the way I think about my pain and how to reduce the pain and anxiety.
At least we’re doing something though instead of sitting around not understanding my pain! Something’s got to help eventually :)
First visit with my new sexual psychologist (cognitive behavioural therapist). Unfortunately, I was ten minutes late to a fifty minute appointment, so it went pretty quickly! Mostly an introduction, did we think we’d be a good fit for each other, and a new explanation to vulvodynia no one has been able to offer me before!
She explained it by comparing my neural pathways to fire alarms, a normal fire alarm is there to tell us when there is a major fire in our house that is dangerous. Sometimes you get a really sensitive fire alarm that goes off every time you use the toaster, for women with vulvodynia it’s like they have five of these sensitive alarms above their toasters, there’s no real danger even though they sense there is.
Another thing she explained to me was how bad white knuckling through the pain could be (as I’m sure many of you and I used to do). When something is painful, that’s our body and brains way of saying so not do that. Our bodies and brains start off by telling us not to stimulate our vulvas or vaginas (for whatever reason – there is a theory I’ll discuss next) by making it painful, but if we continue to push through the pain and stimulate on multiple occasions, our brain kind of says “she’s not listening, let’s make some more neural pathways,” which unfortunately for us, makes stimulation even MORE painful. Ugh. So my therapist has suggested not to do anything that causes more than a 3/10 on the pain scale (0 being no pain at all and 10 being like hospitalized pain).
Why does our brain make us think something that shouldn’t be painful, painful!? The theory (only a theory, no experimental proof, or significant studies yet) involves stress (surprise!). It’s been noticed that a lot of women with provoked vulvodynia (PVD) have a lot of internal stress (internal stress wasn’t explained to me too well, but I believe it has less to do with life stresses and more about how you think about them and internalize your life stresses… I think), and the body’s way of trying to relieve some stress in by trying to prevent you from stressing certain parts of your body, and it starts with your vagina and can sometimes even spread to other parts of your body. The theory falls through for women like me, who have been diagnosed with primary vestibulodynia (vulvodynia), or women who were born with the condition.
She did assign me a bit of homework in the end too, mostly just making a quick write up about my life, things I would do if I had no pain and things I avoid because of my pain. So all in all, a very informative session, and I will definitely be returning to see her in a couple weeks!
Money spent today on psychologist: $150.00
Travel Expenses today: $165.00
Total expenses today: $315.00
Total Psychologist fees up until today (not including travel expenses): $150.00
In September I went to the assessment appointment I was referred to by my gynecologist, for my pain at the hospital. It was for a program that would provide a bit of treatment (multiple treatments actually) and take data on whether the treatments had an effect or not on my pain.
It started out well, with an interview with the doctor asking me about my pain, intercourse, anxiety, etc. And then things turned south, he wanted to conduct a genital exam, not what I wanted to hear. I immediately got anxious, but was (and still am) so desperate to start getting this issue treated that I sucked it up and went through with it.
Thank goodness my partner was there, but it didn’t stop me from bawling my eyes out before the examination even started! They did the Q-tip test where they gently touch the Q-tip to (I think) 6 different areas on the vulva, although it didn’t feel gentle to me, it felt like a knife tip touching me in the same spot, not fun. At one point he asked if he could gently examine the inside of my vagina, as I have pain there as well. I said yes, still desperate to know what’s wrong so I can be treated, but apparently I got so scared my “pelvic floor rolled.” I have no idea what that means! I think I tightened up so much he wouldn’t have been able to insert anything. I wanted to tell him to do it anyway, because after something is inserted, I can relax my pelvic muscles, even though it’s so painful, but I was crying so much I couldn’t communicate to him to continue.
We went back into his office for a quick conclusion, where I was told my symptoms were too severe for the program to be of any benefit to me, I was handed a piece of paper on proper vaginal care (only cotton underwear, no bubble baths, etc.), a list of pelvic physiotherapists in my area and a list of cognitive behavioural sexual therapists (of which there are none in my area and I have to travel a few hours to see one) and then I was sent out the door.A productive yet disappointing appointment to say the least. And now I must cough up a ton more cash to try some pelvic physiotherapy and cognitive behavioural therapy, and I don’t even know if any of it will help!! Ugh. Stay tuned.