Friday 29 November 2013

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

Thursday 28 November 2013

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

Tuesday 26 November 2013

So you Want to Understand Vulvodynia/Vestibulodynia?


                I realized that I never really gave you guys a very descriptive or good definition of vulvodynia or vestibulodynia. I also realized that I don’t really know the best way to describe it to you, so instead I am going to quote a bunch of journal article definitions for you! Here they are:

Definition from Sexual and Relationship Intimacy among Women with Provoked Vestibulodynia and Their Partners: Associations with Sexual Satisfaction, Sexual Function, and Pain Self-Efficacy by Katy Bois, Sophie Bergeron, Natalie O. Rosen, Pierre McDuff, and Catherine Grégoire: With a prevalence of 12% in community samples, provoked vestibulodynia (PVD) is the most common subtype of vulvodynia and is characterized by a recurrent and burning pain experienced when pressure is applied to the vulvar vestibule, such as during intercourse or the insertion of a tampon. Women with PVD are more likely to report lower sexual functioning and sexual satisfaction as well as more distress about their sexuality than women without PVD, and a reduced quality of life.

Definition from Enoxaparin Treatment for Vulvodynia A Randomized Controlled Trial by Yaniv Farajun, Doron Zarfati, Liora Abramov, Alejandro Livoff, and Jacob Bornstein: Vulvodynia is a cause of dyspareunia in women. This underdiagnosed condition inflicts physical pain and emotional distress on millions. During the course of their lifetime, 16% of women suffer for at least 3 months from burning, knife-like pain or pain on contact in the vulvar area. Vulvodynia is associated with an economic burden to both individuals and society, which is composed of the cost of direct and indirect health care services. It is also related to a relatively low quality of life. The etiology of vulvodynia remains an enigma, acceptable diagnostic criteria remain subjective, and treatment methods are still empirically based. In a recent review of published studies, success rates for medical treatments of vulvodynia vary between 13% and 67%. This compares with 61–94% for surgical treatment and 35–83% for behavioral treatments.

Definition from Women with Provoked Vestibulodynia Experience Clinically Significant Reductions in Pain Regardless of Treatment: Results from a 2-Year Follow-Up Study by Seth N.P. Davis, Sophie Bergeron, Yitzchak M. Binik, and Bernard Lambert: Provoked vestibulodynia (PVD) is a genital pain disorder in women characterized by burning and cutting pain at the vulvar vestibule. The prevalence rate among women in the general population is estimated to be 12%. Physiological and psychosocial mechanisms such as inflammation, pelvic floor muscle dysfunction, pain sensitization, and maladaptive pain cognitions have been suggested to explain etiology; however, there is no systematic evidence supporting any single pathway. Though pain is the primary symptom, PVD is also associated with sexual dysfunction and sexual dissatisfaction. Unfortunately, little is known about how PVD progresses over time.

Definition from A randomized comparison of group cognitive-behavioral therapy, surface electromyographic biofeedback, and vestibulectomy in the treatment of dyspareunia resulting from vulvar vestibulitis by Sophie Bergeron, Yitzchak M. Binik, Samir Khalife, Kelly Pagidas, Howard I. Glazer, Marta Meana, Rhonda Amsel: Chronic or recurrent pain involving the female reproductive system is a neglected, poorly understood, and costly women's health problem. Dyspareunia, or painful intercourse, a recurrent acute pain which can be located anywhere from the vaginal introitus to the uterus and adnexae, affects 10 - 15% of women in North America. Perhaps the most common type of premenopausal dyspareunia is vulvar vestibulitis syndrome, a condition characterized by a sharp, burning pain located within and limited to the vulvar vestibule (vaginal entry) and elicited primarily via pressure applied to the area. This distressing syndrome has no clear etiological determinants, although it has been associated with repeated yeast infections and other urogenital inflammatory conditions.

Definition from A Retrospective Study of the Management of Vulvodynia by
Yongseok Jeon, Youngjun Kim, Bosun Shim, Hana Yoon, Youngyo Park, Bongsuk Shim, Woosik Jeong and Donghyun Lee

Vulvodynia is a condition in women that is characterized by chronic vulvar pain. It may be present constantly, intermittently, or only with intromission during sexual intercourse. The term vulvodynia was originally coined by McKay, and it has been adopted by the International Society for the Study of Vulvar Disease Task Force to describe any vulvar pain. There are no standardized classifications for vulvodynia largely because it is a multifactorial condition in which certain subsets coexist within others. Generalized vulvodynia, or essential vulvodynia, usually occurs in postmenopausal or perimenopausal women and is exhibited by diffuse, unremitting, and burning pain that is not cyclic. This pain may occur in different areas of the vulva at different times, and it may be constant or occur only every once in a while. Vulvar vestibulitis syndrome is specifically characterized by pain in the vestibule and usually occurs in premenopausal women. In this condition, pain occurs with vaginal entry by the penis or a tampon. Patients with vulvodynia usually describe their pain as a chronic burning in the vulvovestibular area that typically lasts more than 3 months. Before a diagnosis of vulvodynia is made, other vulvovaginal problems should be ruled out. Vulvodynia not only causes pain, but often leads to sexual dysfunction, including arousal and orgasmic difficulty. For many women, it reduces overall personal health and quality of life.
                If anyone wants access to these articles or has any questions leave a comment! Hope this helps anyone confused or unsure an out what vulvodynia is!

Friday 22 November 2013

Two Year Pain Reduction Study


                This study caught my attention, as it predicts that women with vulvodynia have a natural decrease in pain over the span of two years. Here’s my review (will discuss my thoughts underneath):

This is a review of Women with Provoked Vestibulodynia Experience Clinically Significant Reductions in Pain Regardless of Treatment: Results from a 2-Year Follow-Up Study by Seth N.P. Davis, Sophie Bergeron, Yitzchak M. Binik, and Bernard Lambert. The study set out to see how women with PVD and their symptoms evolve over time.

They hypothesized that:

A) there would be a significant decrease in pain over a two year period,

B) women who had had a vestibulectomy would report greater pain reductions than those with other forms of treatment and

C) women receiving multiple treatments would have significantly less pain and a better outcome psychosocially and sexually.

The study measured: pain intensity, sexual satisfaction, sexual function, depression, relationship satisfaction and sexual behaviour (more details on how these were measured on page 3). It was a pretty simple procedure: women were referred by their gynecologist or saw an advertisement and were sent a questionnaire package in the mail which they filled out and sent back. Two years later, if they still wished to participate, they were sent the questionnaire package again to be completed.

239 women filled out the questionnaires after the two years. The average age of women who participated was 30, the average duration of the pain in women was five and a half years and the average pain intensity for the women was 6.9/10. On the first questionnaire, women who had had a vestibulectomy reported having more pain, and those undergoing other treatments had less pain.  Physical therapy was the most used treatment in the first questionnaire (treatments used by women are shown in table 1 on pg. 4).

Over the two years, overall, pain and depressive symptoms DECREASED and sexual function and satisfaction INCREASED. All treatments except acupuncture reduced pain, even those who did not receive treatment had a reduction in pain. The study did not show that any one treatment is better than the other (including vestibulectomy’s).

This is a refreshing study for me, as most studies are poorly done, or show no significant effect in curing vulvodynia or even in reducing the symptoms. I also found this study intriguing because my vulvodynia is primary, and I’ve found the complete opposite in my pain and depressive symptoms: over the years mine have increased. So my only complaint about the study is the lack of differentiation between the types of vulvodynia (primary vs. secondary; provoked vs. unprovoked; generalized vs. localized). But this does show hope for those of you who have secondary vulvodynia, maybe patience (along with a bit of mindfulness) will be part of your journey towards pain reduction! Woohoo!

Reference of study: Davis, Seth N P, et al. "Women With Provoked Vestibulodynia Experience Clinically Significant Reductions In Pain Regardless Of Treatment: Results From A 2-Year Follow-Up Study." The Journal Of Sexual Medicine (2013): MEDLINE with Full Text. Web. 22 Nov. 2013.
Can be found at: Two Year Pain Reduction

Thursday 21 November 2013

Update on Diet and Biofeedback

I really don't have too much to update on! Slightly disappointed in some ways that I haven't experienced any extra pain or discomfort since I've been "cheating" on my low oxalate diet, so I believe I'm going to return permanently to my normal diet and scrap the low oxalate as it doesn't seem to provide any added relief.

Oh well, going to have to drink tea again, and start back up on eating chocolate.... darn.

On another note, had my weekly physio appointment, and I learnt that last week I was definitely not flexing the right muscles! I was flexing my butt muscles more than anything, this time I figured out (sort of kind of) the muscles I'm supposed to be tensing and relaxing during biofeedback. I still have little knowledge of where they are and how they feel, but after the biofeedback I managed to successfully tense AND relax my pelvic floor. Yay progress!

Another other side note, my younger sister was diagnosed this week with primary PVD as well, which brings about questions of genetics and such. She was diagnosed and accepted into a research program, so I'm excited to see how her treatment works out for her.

But why don't researchers come flocking to me, her, us to use us as case studies!!! Gaaah.

Stay tuned.

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Wednesday 20 November 2013

Ups and Downs - The Rollercoaster Ride we call Emotions


                I’ve been having a couple of down days, not for any reason in particular. I’m not experiencing any extra pain, or even any severe pain. Yet, I’ve been feeling sad.

                Every individual person has a lot of things to complain about life, even me (and believe me, I complain a lot). Whether it’s about a job, a person, an event….

                But you know what, for everything we complain about, we could think of something we’re thankful for too!

                It can be hard to see when you’re feeling low, but it only takes one good moment or good deed to show me the amazing things in life.

                I know Thanksgiving has long since passed (in Canada it has anyways) but here’s a list of things I sometimes take for granted, but absolutely love and am thankful for every day, even if I don’t show it all the time!

                My boyfriend, my job (I know I’ve never spoken of my job before, but trust me, it’s amazing… maybe I’ll talk about it in a future post), the various other people in my life that support me like friends, coworkers, family, etc., I’m thankful my dad lets me live in his house rent free while I go to school, my car (I do love my car Goldilocks), annnnd tea (which I’m drinking again by the way if you haven’t read my low oxalate diet post yet)!

                I know there are more things than just that, but this is just a quick post to get it all off my chest. I was in a quick session at work, and it just went so well, and one of the women I work with/for said some very supportive and great things that pulled me out of my nasty blues. I’m ready to conquer the rest of my day and hopefully week too!
                Brighten someone’s day today!

Tuesday 19 November 2013

Enoxaparin Research Study - Summary and Review


Hey girls! As a psychology student, and consumed by the idea of vulvodynia, I do a lot of research in the subject! I haven’t posted any of the research I’ve found as of yet, but would like to start. Today I found a study on this drug called Enoxaparin. The study is called Enoxaparin Treatment for Vulvodynia A Randomized Controlled Trial by Yaniv Farajun, Doron Zarfati, Liora Abramov, Alejandro Livoff, and Jacob Bornstein. I’ll post the real citation underneath my summary of the article.

                The study recruited 40 women with severe localized provoked vulvodynia. They were randomly assigned to a placebo group or the Enoxaparin group. The women had to self-administer an injection every day (either 40mg of the Enoxaparin or a saline solution for placebo group) in the abdominal region, for 90 days. Women ALSO had to follow a low oxalate diet and take calcium citrate supplements (to give all clients a similar nutritional background – controls the variable of nutritional background).

The researchers hypothesized that Heparanase is a cause for an increase in neuron growth and neuron penetration in the vestibule which would vulvar sensitivity and pain. Enoxaparin may block the enzyme activity and inhibit the effects of the heparanase and so this study tests to see if Enoxaparin relieves any vulvodynia pain symptoms.

The Q-tip test was administered before treatment, with pain measures, and re-administered after the 90 days of treatment and then three months after completing the treatment. Participants kept a log book of side effects such as easy bruising, abnormal bleeding.

So what did they find? The Q-tip pain scores (scale 0-10), in the Enoxaparin group, reduced on average from 8.2/10 to 6.25/10 after treatment and 5.8/10 three months following treatment (a nice graph showing this on pg. 568 - figure two). Also, the women in the Enoxaparin group reported feeling less pain during intercourse by the end of treatment.

At the beginning of the study, women in the Enoxaparin group, had 15 women who could not have intercourse because it was too painful but by the end of the study, 20 women could not have intercourse because it was too painful (that doesn’t sound to promising!).

At the beginning of the study for the Enoxaparin group, 45 women had such intense pain they always had to stop mid intercourse and 40 women had intense pain but were able to complete intercourse with full penetration; by the end, these two categories decreased to 15 and 25 women (that’s a bit better).

And at the beginning of the study, zero women were under any of these three categories: almost painless intercourse, painless intercourse and not sexually active lately; by the end, these categories were filled with 35 women, no women and one woman.

But, the women in the placebo group showed a decrease in as well (although not as much)! There’s a detailed table showing everyone’s pain increases and decreases on pg. 570 in table five.

So there you go! Maybe Enoxaparin could be used as a treatment for women with localized provoked vulvodynia. It WILL NOT work for women with generalized and/or unprovoked vulvodynia treatment. The downfall to thus treatment: you have to inject yourself every day! And if you look the drug up, it’s got some not so nice side effects because its main use is to prevent Venous Thromboembolism type diseases.

There were a couple other things I didn’t like about this study, starting with the use of a low oxalate diet. I understand they wanted everyone to follow a similar diet to cancel out any external variables that could influence the treatment, but a low oxalate diet COULD affect treatment, because it is a treatment for some women! So it’s possible that some of the women (in either the control or the Enoxaparin groups) could have had symptom/pain relief not from the placebo or the Enoxaparin but from the low oxalate diet!

The other thing I didn’t like was that there was no mention of how many side effects were logged or called in.

Either way, I personally think, that this isn’t enough evidence (yet) to go out and ask for an Enoxaparin prescription. I’m sure further research will be done on the subject, and I would wait to see what those studies come up with for results first.

The proper citation for this article is:  Farajun, Y., Zarfati, D., Abramov, L., Livoff, A., & Bornstein, J. (2012). Enoxaparin treatment for vulvodynia: a randomized controlled trial. Obstetrics And Gynecology, 120(3), 565-572. doi:10.1097/AOG.0b013e3182657de6
And the article can be found for PDF download at: Link to site with PDF

If you guys have any questions about the study, about my summary, about any confusing terminology, etc. Leave a comment and I'll answer as best I can, ask someone who can or refer you to other resources.

I'm in my fourth year of a psychology program, so there are even some things in this study that I didn't quite understand, but what I've written for you guys above is the nitty gritty (the main important portions of the study that are important to an every day consumer). 

Sunday 17 November 2013

vaginismus.com

Just found this great website! It's got products available for purchase (dilating sets, self help books, videos, kits, etc.) and great information on different treatments, diagnoses (primary vs. secondary, etc),  just a whole bunch of great stuff that I just had to share!

vaginismus.com

Low Oxalate Diet


 

            I haven’t made a post about this yet, but for about a month and a week I’ve been trying the Low Oxalate Diet. I tried it a couple months ago, and after two weeks had a session of relatively successful sexual intercourse. It was still painful, but not so painful that I couldn’t get past it and make it through a whole session of intercourse. I stopped the diet afterwards, as it’s not a fun one in my opinion, and haven’t had intercourse since. I have no idea whether it was a factor or not in the less painful intercourse, but I thought I’d try it up again, and this time for a bit longer as they recommend individuals do the diet for three months!

            The Low Oxalate Diet is the diet they put people on when they commonly get kidney stones and such. When I first came across the diet, I was like “What the heck is oxalate?” not easy to find info on, but from what I’ve read, it seems to be in EVERYTHING (i.e. all plants and all animals). The body uses it as a way to get calcium out of our bodies, it bonds to the calcium and crystallizes to make it easier to excrete it from the body. When we have high levels of calcium AND high levels of oxalate that’s when kidney stones can form (the crystallized calcium) or smaller portions of this crystallized calcium can cause pain when being excreted in our urine (thus the pain some women may have following intercourse as they urinate). I personally do not get these forms of pain, but I came up with a theory on my own! Can’t remember if I read it somewhere or not, so don’t take this as a fact (I’ve mentioned it to my doctor and he didn’t tell me it wasn’t impossible…) but calcium is typically near bones, like pit spinal cord segments, if the oxalate bonds to the calcium near a spinal segment where my neural pathways to my pelvis are, perhaps the crystallized calcium pushes up against and pinches the nerves/neural pathways. Seems logical, right? So I decided to give the diet another shot!

            Here’s the grid I follow for what I can eat every day, what I can have every once in awhile and what I should not ever eat.
 

            The only problem I found while being in the diet: the psychologist told me not to do anything that causes higher than 3/10 on the pain scale, so how do I test whether it’s working or not??

            Well! Today is the day I’m hoping to find out, it’s been almost a month and a half, and I’ve decided that today is going to be my cheat day! I’ve already had a big cup of black tea, a grainy bagel with peanut butter on it and some chocolate! Oh how I’ve missed all of these things, and berries too (but I haven’t had the chance to have any today … yet)! If this diet works, I’d expect that after this cheat day of high levels of oxalate, I’d experience a significant amount of increase uncomfortableness over the next couple of days. If I do experience an increase in pain or general discomfort, then I’ll continue the diet, if I don’t feel any difference in my comfort or pain level, I’m going to go back to eating my normal foods (and tea!).
            I’ll keep you guys posted J

Thursday 14 November 2013

Biofeedback with Physiotherapist!


                It’s been a crazy week! Monday was Remembrance Day, my partner is the bugler for the ceremonies in our city so we were running around all morning for that, it was also my dad’s birthday so there was a big dinner that night! Then Tuesday I had a midterm, Wednesday I wasn’t too busy but was freaking out about a presentation I had to do today that I hadn’t finished, so I was up until midnight, didn’t finish and had to wake up at 6am to finish up and still make it to my 8am physiotherapist appointment! Phew.

                I was nervous about this appointment because today was the day we tried biofeedback. I had no idea what to expect. I was worried about where the electrodes would be placed, because they’re quite sticky and I was advised not to shave (not that I needed an excuse anyways!); it turns out physio’s usually place them near the anus, as I learnt firsthand this morning; apparently it’s because there is typically less pubic hair there, fair enough!

                I’m not sure if any of you have seen how biofeedback works, if not here’s a quick video: Biofeedback with Dr. Oz

                Basically, an electrode (or multiple electrodes) is attached to the muscle area you’re trying to learn about, in my/our case: the pelvic floor (and apparently anus). Then it’s plugged into a computer and a program is started that shows a graph/chart of the electrical activity going on in that muscle area. The line on the chart is in continuous waves, when you’re relaxed they are quite small, and low on the graph, when you tense the muscles the line spikes to the top of the chart and the waves increase in size and frequency. You’re asked to tense your muscles for so many seconds followed by relaxing your muscles for so many seconds, and you repeat it between 5 and 10 times. After that, you get to look at the screen and see what it looks like when you’re tense versus when you’re relaxed.

                It was very interesting for me, especially for the first couple of trials when I couldn’t see the screen. The physio would say “tense up,” I’d squeeze my pelvic floor, wait for her to say “and relax” and then I’d “relax” my pelvic floor… or what I thought was relaxing! I must not have been re, axing very well, because she would repeat that a couple of times: “okay, relax… relax… push it out… deep breaths, relax…” I understood why after she showed me my activity on the screen, I was not relaxing! Even though it felt like I was? It was strange. So we tried some more myofascial tissue massage, re-hooked up the electrodes and tried again.

                It seemed to have gone better on the screen, but when I got to watch my activity, I could see myself relaxed, I could tense my muscles, but when I’d try to relax (or what I thought was relaxed and felt relaxed) the computer and chart still showed I was tense. If I focused really hard, eventually the line on the chart dropped down to what was considered “relaxed” but I physically could not feel that relaxation. I could feel my muscles going from relaxed to tense, but not tensed to relaxed. So I believe that might be our next goal! Trying to get me to recognize when my pelvic floor is tense or relaxed and how to get it from one stage to the next.

Today’s total: $40.00
                Grand Physiotherapy total: $210.00

Friday 8 November 2013

Second visit with Psychologist - Sensate Focus and Thought Recording


Another long day, about six hours of travel time for a two hour psychologist appointment. A very productive appointment though! Learnt some new techniques that I’d like to share with you guys, mainly to do with the homework I was assigned.

The first thing I’d like to mention, is last time I was assigned homework for this appointment that I forgot to write about: A Cognitive Hierarchy of Fears.

I’m no psychologist, and so I’ll do my best to describe it, but do some research of your own and if you think it may be a beneficial tool I would recommend consulting a psychologist to help you build one or look over yours and help you with the steps after the hierarchy being written.

When I was building my hierarchy, I thought of all the situations that scare me to do with my pain (self stimulation, foreplay, sexual intercourse with penetration, kissing, cuddling, etc.). Once I thought of all the situations that cause me anxiety (any level anxiety/fear from a little bit to a lot), I put them in order of least fearful to most fearful and finally give them a fear score out of 100 (ex. Sexual Intercourse - 85/100). When working with a psychologist after making your hierarchy, he/she will help to decrease the anxiety associated with those situations, and each psychologist will have his/her own methods of going about this. What I have heard of some psychologists doing is teaching their client relaxation techniques (deep breathing, muscle relaxation, changing thought processes, etc.) and once the client is comfortable with the technique(s), the psychologist will describe a lower anxiety situation from the hierarchy to the client, the client is to imagine this situation as it’s being described, and use the relaxation skills to decrease the body’s natural reactions to anxious situations. You might be thinking “but how is that going to help my real life pain?” Surprisingly, research has shown that once you can remained relaxed while imagining all these situations, and your anxiety level in these situations has decreased to a low score (out of 100), that the skills will transfer to the real life situations as will your anxiety levels to the situations. The brain is powerful, but easily tricked! When you imagine a stressful situation (or any situation really), your body will act as if you are truly, physically in the situation, and so practicing while imagining can be equally as effective as practicing in as real life situation!

My psychologist and I did not work on this today, but she noticed in my previous homework that I have a bit of fear to any physical touch that may or may not lead to any sexual activities, so she suggested an interesting exercise for my partner and I to try: Sensate Focus.

Apparently there are five stages to sensate focus, she only described to me the first stage. The first stage involves taking a half hour with your partner, and exploring with touch anywhere except the genitalia and the breasts. For fifteen minutes each, one partner will touch the other all over his/her body – light touch, deep touch, one finger tracing, full hand massage, etc. As the partner is touching different parts of the body (for 30-60 seconds each body part touched), the receiving partner is to “go inside his/her own body” and practice deep breathing and thinking about how the touch feels (where do I feel this? It is tingling. It is ticklish. It is soft. Etc.). There is no talking between partners during the process, except that the partner receiving the touches should say ratings out loud as to how the touches feel (example: 2/10; 9/10; 5/10, etc.). Any rating above zero is a good rating, if there in any touch that is painful or too unenjoyable, “stop” must be said, and the partner just moves on to another area of the body. 1’s, 2’s and 3’s should not discourage the partner touching from the area he/she is touching, in fact he/she should continue touching that area for the thirty to sixty seconds, because as the partner receiving touch relaxes and is deep breathing, the feeling of the touch may change. After fifteen minutes lf touching one partner, the two should switch roles (no feedback or discussion while switching). After both individuals have had fifteen minutes of touch, then you can offer each other feedback. This is a beneficial exercise for many reasons: couples get to learn where their partners enjoy being touch and what kind of touch is pleasurable; if either partner had a fear of touch, he/she will begin to habituated and maybe start to uncover some non-sexual pleasurable touches; it allows each partner to practice relaxation techniques and a new way of thinking about touch, a more curious thought process about how the touch feels, where it affects your body, etc. The last important thing to remember is that this is not meant to be sexual, and that the couple should refrain from any sexual interaction during the exercise and for at least an hour afterwards.

Some resources to learn more on senate focus:


-          Link to Great PDF

My second homework assignment was to start a thought record.  In this thought record, I’m to write down any thoughts I have about my diagnosis or pain, the date I have this thought, if I experience pain during the thought or prior to the thought I need to rate the pain out of 10, the situation that provoked the pain and/or the thought and if my thoughts follow any thinking errors.

Thinking errors are different ways of thinking that have been identified of thought processes that people experience when they experience chronic pain, depression, anxiety and other disorders that affect the way we think. Here are some examples:

-          All or none thinking: you see only two categories in a situation, everything is black or white, no grey areas. You might use language like “always, every or never” and something feels like it is either completely good or completely bad.

-          Fortune telling: predicting that negative things are going to occur. An example might be “I’ll never get better.”

-          Catastrophizing: thinking that the worst is going to happen (kind of like fortune telling, but to the extreme).

-          Discounting the Positive: ignoring positive aspects or somehow altering them to seem negative.

-          Emotional Reasoning: because you feel emotionally something is true, you ignore any evidence discounting it and follow your emotions. Example: “I wouldn’t feel so hopeless if it wasn’t so.”

-          Labeling: labeling yourself or others. Example: “I’m a (sexual) failure.”

-          Mental Filter: paying attention to negative details instead of the whole situation.

-          Mind Reading: believing you know what others are thinking and not thinking of alternative possibilities. OR you assume that others should know what you’re thinking.

-          Overgeneralization: making the assumption that a negative situation will occur forever and repeatedly. Example: “I will never have pain free sex.”

-          “Should” and “Must” Statements: you know how you want yourself and others to act and are upset when the expectations are not met. Example: “I should be able to enjoy sex.”

-          Maladaptive Thoughts: thoughts that may be true, but do not help to dwell on. Example: “I’m feeling a lot of pain” or “It’s not fair.”

-          Minimizing: refusing to five yourself credit for any positive feedback received.

Nobody will experience all of these thought errors, but maybe a few of them. There are ways of rethinking these, and writing them down makes it that much easier to see them and say, “That definitely is fortune telling, I could think this instead.”

Here are some good resources to learn more about thinking errors and thought recording:

-          Cognitive Thinking Errors

-          PDF of Thinking Errors


-         More Thought Recording Sheets

My last homework assignment was to start tracking my pain and interventions. At the end of every day I need to write down if I had physiotherapy that day, if I experienced pain that day, what my stress level was that day and if I used any interventions that day. Hopefully this will help us to start pin pointing aspects that might affect my pain!

This was a long trip, but it was productive, I’ll be returning in three and a half weeks to the psychologist. Here’s money spent:

Money spent today on psychologist: $300.00

Travel Expenses today: $165.00

Total expenses today: $465.00

Total Psychologist fees up until today (not including travel expenses): $450.00

Friday 1 November 2013

Skin Care Recommendations to Relieve Symptoms


                At the end of my assessment appointment I was given this sheet of skin care recommendations that may or may not relive some symptoms, maybe they’ll help you girls out, here they are:

1.       Avoid chemicals that might irritate the vulvar skin (i.e. soaps, douches, perfumes, over the counter vaginal preparations or feminine hygiene spray)

2.       Use soap substitutes such as gentle cleansers that are “hypoallergenic” (ex. Cetaphil, Dove or Aveeno brands)

3.       Do not use fabric softeners in your pants and underwear loads of laundry

4.       Do not use synthetic panty liners for menstruation or daily wear – most pharmacy’s or drug stores sell an all-natural brand that doesn’t dry out your vulvar skin (ex. Natracare pads), or you can purchase reusable cotton pads (can buy from health food stores, gladrags.com or lunapads.com). You could also try a menstrual cup (ex. DivaCup, Keeper Cup [rubber product] or Moon Cup [silicone cup].

5.       Avoid contact with synthetic material – only wear cotton underwear and pantyhose with cotton panels

6.       Wear loose clothing that allows air circulation. Try to sleep without underwear as many nights a week as you can

7.       Use a sexual lubricant before and during intercourse as needed (i.e. personal lubricants in liquid form; ex. Astroglide, KY Sensual Silk, O My Lubricant). Do no use a gel lubricant.

8.       Use a moisturizer on vulvar skin after showering (ex. Clinaderm, Lubriderm, Glaxal base or Replens [a good moisturizer that can also be used as lubricant])

9.       Use Vaseline jelly or Penaten cream on sensitive vulvar skin areas as a protective barrier

When your vulva is hurting:

1.       If you only have mild discomfort with sexual intercourse, apply a numbing/freezing gel to the vestibule 5 minutes before intercourse (ex. Xylocaine 2%)

2.       After intercourse, sit on toilet or in bath tub and pour cool water over vulva. Can even apply a cold ice or gel pack to the vulva for 5 minutes.

3.       Do not scratch the vulvar skin. If itchiness is a problem, try to rinse off your vulva then use an ice pack, apply a moisturizer or a barrier gel/cream.

4.       If you’re experiencing pain while urinating, try rinsing during or after urination. If it’s too painful to urinate on the toilet, try sitting in a bath and urinating (the bath water will dilute the acidic urine and make it more comfortable)

Hope these tips help some of you out! I can tell you that the most useful tips for me have been: use of a barrier cream, no bubble/Epsom salt baths, using Xylocaine if I have to wear tight pants of underwear that sometimes causes pain, only wearing cotton underwear, and for sure investing in the Natracare pads! Before, I was just using whatever pad was on sale at the drug store or Wal-Mart or wherever, and my vulvar skin would become so dry, itchy, red and irritated; I haven’t experienced any of these symptoms with the Natracare pads, although I will sometimes also use a barrier cream (petroleum jelly). These tips won’t remove your major pain symptoms, but they definitely help with the unprovoked pains and the continuous discomfort we experience daily.
In the comments, leave your own tips and tricks that have helped relieve your daily discomfort!