Brief Update

I haven't had much to update on! I had my last physiotherapy treatment for the year on Thursday, biofeedback went even better! She didn't want to try dilators until the new year, which is good because the set I want to order was having some trouble on their website for shipping items to Canada, and when I called the supplier instead if trying online, I was told they were on backorder! So maybe I won't even get a set of dilators before my next physio appointment. I'll have to try again this week.

I've finished exams too which is a load off my back, but now it's time to work into overdrive to pay for Christmas, January semester, physiotherapist and psychologist! I've got a twelve hour work day ahead of me, wish me luck!

VCH program helping women with silent but common condition | VCH News |

VCH program helping women with silent but common condition | VCH News |

New stat - 1/5 women with sexual pain!

This is a super new article, it explains vulvodynia the best I've seen in the media so far, not sure where they got their stat though, so maybe don't believe it 100%

Link to Sexual Pain Media Article

On the Topic of Vaginal Dilators...

I haven't decided whether to purchase a dilators set or not yet BUT I did just find this amazing website containing a guide to using dilators properly! Link to Site

It discusses how to deal with the pain, the fear and anxiety, the different kinds of dilators, and detailed instructions on how to use them.

Psychologist Visit – Vaginal Dilators, Thought Adaptation, Pain Reduction… maybe?

                Got to see the psychologist yesterday, usually I would travel with my boyfriend, but he had to work and so I traveled on my own which was pretty stressful. Everything actually went quite smoothly though.

                I showed her (the psychologist) my biofeedback papers and she was impressed with those, which brought up the next step: dilators. We discussed whether or not I’m comfortable trying out dilators, and if I’d prefer to use them on my own, or use them with the physiotherapist. I think I’d prefer to use them on my own first.

                I’ve looked into the different kinds of dilators and such. You can buy a set of wax dilators or silicone dilators. But actually, you can use any object you’re comfortable with as long as it’s sterilized properly. For example, because dilators are expensive, and actually made out of wax, theoretically you could buy different sized wax candles, put a condom on the candle, lube it up well and use those! Way more affordable, but not sure what I’ll do yet.

Here are some website where you can purchase dilators:

The site recommended to me to buy silicone dilators: pureromance.com

A different style of silicone dilators: coopersurgical.com

A site to buy individual sizes of silicone dilators instead of a full set: soulsource.com

A site for a set of wax dilators: laurelprescriptions.com

                After that, we went over my thought records, which she said were done well, and we discussed starting a new type of thought recording. This time, I fill out where I was when I had the thought and what I was doing, the thought (and sometimes how much you believe in it), and my emotions while having the thought. Nothing new there, but then I need to write down things that support this thought, things that do not support the thought, and then a replacement thought and how I am feeling afterwards. She went through an example with me and it looked like this:

                Thought: It’s never going to get better (believe this 98%)

                Emotions: Sad - 8/10

                Supporting ideas: I’ve had the condition for a long time, no cure has been found, a lot of women don’t find relief.

                Contradicting ideas: many women do get better, research shows that most women have pains reduction after two years of being diagnosed with or without treatment, we can’t predict the future (I don’t know for sure that it won’t get better), a lot of my hopeless thoughts don’t turn out to be true

                Replacement thought: It could get better (believe in it 30%, but now only believe “it’s never going to get better” by 60%)

                Emotions now: Sad 2/10

We were successful in minimizing the sadness and changing my beliefs. As you fill out the form more often, your replacement thought could also change in how much you believe it or even change entirely to “it is getting a bit better.”

                After that we discussed that I had discovered an area between my labia and my clitoris that doesn’t hurt when touched. She pointed out that we don’t really have a baseline as to where my pain is or how bad it is, so a goal would be to look at my own vagina and try to determine where the pain is… one problem, I have a huge fear of looking at my vagina! So I’m going to do my best over the next couple weeks to explore a bit and see what I can discover down there.

 That was pretty much all we discussed, I see her again on the 17th! So here were my costs:

                Psychologist: $300.00

                Transport: $52.00

                Total for the day: $352.00              

                Total Psychologist fees up until today (not including travel expenses): $750.00

Finally! Some progress with Biofeedback (with Pictures!)

                Yesterday I had another physiotherapist appointment, we did the usual routine we’ve been following for a couple of weeks now: a quick catch up, some connective tissue massage, and then I’m hooked up to the biofeedback. For the past couple of weeks, my muscle control has not been fabulous, in fact here’s a printout of one of my first biofeedback measurements:

                    It’s all over the place! The vertical, lighter lines are the markers. Each first line (i.e. 5, 37, 71 and 90 seconds), is when she told me to tense my muscles. The second lines (i.e. 9, 46, 74, and 96 seconds) are when she told me to relax my muscles. The lines SHOULD be very tall and edgy in between the markers and should be short and wavy in between the ending marker and the next starting marker… like this (the middle line on the computer screen):

(picture from a Google search found on: http://facstaff.unca.edu/cschrade/biofeedback_faq.htm)

                    Mine obviously is not overly similar to that. BUT TODAY something magical happened, I had a beautiful EEG reading after the connective tissue massage! Check it out:

 

 

                Much more normal looking! The physiotherapist was very excited, because obviously something good is going on down in my pelvic musculature area… although I’m not quite sure what. That’s not true, this shows that I obviously know how to tense AND how to relax my pelvic muscles, my issue is, even though this shows that I CAN do it, I don’t actually feel a huge difference between when my muscles are tense or when they’re relaxed.

                She printed these off for me to bring to show the psychologist on Tuesday, so we’ll see what she has to say about them, and about my homework (thinking errors… senate focus, etc). Apparently the next step might be dilators, not as scary as I used to think, which is a good sign, but I still get nervous about the idea.

Physiotherapist expense update:

Today’s total: $40.00

Grand Physiotherapy total: $290.00

Depression and Anxiety Causing Vulvodynia?

                What a breakthrough this would be! Here’s my review of The Influence of Depression and Anxiety on Risk of Adult Onset Vulvodynia by Maheruh Khandker, Sonya S. Brady, Allison F. Vitonis, Richard F. MacLehose, Elizabeth G. Stewart, and Bernard L. Harlow before I say too much more…

The researchers sent out a questionnaire, they received 662 back who reported having vulvar pain (for more than 3 months) and 9922 women with no vulvar pain. Of those women with vulvar pain, 56 were diagnosed with vulvodynia. There were a total of 240 participants, the participants without vulvodynia were used as a control group.

Women were measured for Major Depressive Disorder, dysthymia (low levels of depression), general anxiety disorder, posttraumatic stress disorder, obsessive compulsive disorder, social phobia and agoraphobia (fear of leaving the house). The main goal was to measure whether the onset of depression/anxiety occurred in women before their vulvodynia symptoms, after the onset of symptoms, or both before and after, to see if depression/anxiety may cause vulvodynia or if vulvodynia causes the depression/anxiety.

They found that women with vulvodynia were more likely to have a history of mood or anxiety disorders and were more likely to develop them (no matter the age). 26.7% of the Women with vulvodynia in the study had a mood or anxiety disorder before the onset of vulvodynia symptoms compared to 11.3% of the women in the control group (similar time frame used). Women with vulvodynia had rates of new mood and anxiety disorders seven times greater than the women with no vulvodynia pain history.

This study shows that anxiety and depression don’t always only occur after the symptoms of vulvodynia arise. The researchers believe this study could be used as evidence to support the hypothesis that depression and anxiety could cause vulvodynia.

I don’t believe this study provides too much evidence to support that, but it still is an interesting study, and I hope to find some more studies that look into this (even though this is quite a recent study, 2011!). I have a few criticisms… firstly, the study only looked at 56 women, which the researchers can’t help, but they may have found more support for their hypothesis with more participants. The other thing is that depression and anxiety are SO COMMON now. I’m not sure that (if we looked at a way larger sample size) we would find that women with vulvodynia have more depression/anxiety before their symptoms arise compared to women who don’t develop vulvodynia. As much as I wish that were the case, because then we’d be able to possibly prevent vulvodynia from occurring just by helping women avoid depression and anxiety. But if vulvodynia WAS caused by these mood disorders, don’t you think it’d be a quick cure? Get rid of your depression or anxiety, and your pain will go away… I get depressed sometimes, but my pain is no better when I’m not depressed, and it isn’t significantly worse when I am depressed.

I must say though, I did have depression before my diagnosis, and I did develop an anxiety disorder after the diagnosis. I have conquered my anxiety, and as I said, I am rarely depressed. Yes, I get sad some days, but who doesn’t? I haven’t truly been depressed for a while now. Is my pain gone? Not yet.

I hate being a Negative Nancy, but when treatments continually fall short you start acting pretty sceptical! It never hurts to tackle your depression/anxiety though, and if you do experience one or the other (or both!) I do strongly recommend starting off by treating it (whether it be with medication or behavioural techniques or whatever else) because it does help keep your hopes up while pushing through your treatments, your pain, your relationships, etc. I am so glad I have reduced my anxiety, and it truly has made a difference for me and my diagnosis, I have more support, more confidence and self-esteem (which was something I thought vulvodynia had taken away from me).

I’m ranting now… but it feels good! That’s the main point here readers, just feel good! Make it your goal for the day :)

Here's the reference and link to the article: Khandker, M., Brady, S. S., Vitonis, A. F., MacLehose, R. F., Stewart, E. G., & Harlow, B. L. (2011). The influence of depression and anxiety on risk of adult onset vulvodynia. Journal Of Women's Health, 20(10), 1445-1451. doi:10.1089/jwh.2010.2661