Unbelievable Update

I am so so sorry for not updating in so long!

When I first started writing this blog, I was absolutely obsessed with my condition and learning about it and creating awareness and finding a "cure."

I realize now (and truly believe) there is no cure. That sounds depressing, but keep reading, because there certainly is relief!

It's been a few months since updating, I think my last update involved physio and some new dilators. The size 1 silicone dilator is about the length and diameter of my pink finger. Not very big for most, but when I first saw it I almost started crying anticipating the pain.

Believe it or not, I can currently insert the size 4 dilator with virtually no pain!

Physio was stressful for me, especially when I started bringing my dilators. The usual appointment involved my physio doing some Connective Tissue Massage (CTM) on my legs and then inserting the size 1 dilator or her finger for internal CTM. The anxiety was unbearable, until I suggested that I insert the dilator and then she do the internal CTM. That was the change I needed, I was not as anxious to insert the dilators on my own.

Now, like I said, we're up to the 4th dilator at one appointment a week (now once every two weeks).

AND my partner and I have even successful attempted and completed intercourse! I quickly insert the largest dilator I can handle and then we have sex. It's still painful at first, but once we get over the initial "hump" (I call it the hump because literally, deep within my vagina I feel like he has to push past/over this hump) ... and once he has pushed past this extremely painful physical hump/lump in my vagina, the pain instantly disappears and we can actually have sex!

My new problem is that I never remember. I remember having sex, I remember thinking it felt nice, but I cannot actually remember how it felt or whether or not I enjoyed myself. I contacted my Psychologist about the issue, and she has asked me to pause during intercourse or foreplay every couple of minutes to check in with myself and my partner to see how I'm feeling. This will tell us if I'm disassociating completely during intercourse or if it is some sort of amnesia.

EITHER WAY my pain has significantly decreased! Like I said earlier, I don't think it will every be cured, I think this will be a type of pain that I will need to maintain and manage for the rest of my life and as long as I keep up with dilating and possibly some bi-yearly or every few months have some physiotherapy, the pain will remain controllable.

My advice to anyone with pelvic pain similar to my own is to try these techniques first (especially before considering surgery): seek a sexual psychologist, find a pelvic physiotherapist, keep all doctors involved communicating and sharing ideas and achievements, buy a dilator set (silicone was the best choice for me because of mental blocks for fingers and stiff items, the silicone was smooth [i.e. not sharp looking] and flexible), and use an all-natural water based lubricant. You have to want the pain to go away, you have to be open, because if you aren't, no treatment will help and in fact your pain will grow and get worse. Mine almost went from 4/10 provoked vestibulodynia to 8/10 unprovoked vestibulodynia (numbers out of 10 based on the average pain I felt over the time periods I had them). Now I'm back down to only having unprovoked pain, and it rarely goes beyond a 3/10.

Please leave comments, ask questions, share you stories, I still want to raise awareness, help anyone I can, offer advice or just an ear to listen!

One Step Forward, Two Steps Back...

                I am sorry I haven’t been updating a frequently. A lot has been going on between school and work. As for the vulvodynia though, things have been very positive until today.

                All my pain along the vulva and labia are gone. The only thing I haven’t tried and am still very scared of is penetration. The first physio appointment where we massaged my perineal gland was very positive, virtually no pain. A couple weeks ago when we tried, a bit more pain (a stabbing, knife like pain, probably 4/10 – uncomfortable but bearable).

                Today we tried again (haven’t been able to the last week due to my period – yay.), she had to stop, I couldn’t relax and it was too painful. I didn’t ask her to stop, I could have continued but she didn’t feel comfortable or that it would be beneficial, so instead we did our connective tissue massage and she asked me to work on my focus and cognitive thoughts on relaxing.

                What a downer! Everything had been going so well: I don’t need to see the psychologist anymore except for follow-up, not exterior pain, no flare-ups, but apparently still an aversion and pain for insertion. She’s only been using her finger, so I am not even capable of dilating yet. Guess back to the cognitive drawing board.

                I’m going to make a goal until our next appointment to take 5-10 minutes a night to do some self-exploration down there while focusing on my thoughts and relaxing my muscles. I’ll let you guys know how it goes.

Others' Pelvic Pain - Male Pelvic Pain and Unprovoked Vulvodynia Stories

Recently I've had the opportunity to be in communication with two strong individuals each undergoing their own pelvic pain journey.

I discovered Robert's website through a PT's twitter account. Robert has a great YouTube video: Robert's Video
And he also has started up a blog to document his successes, symptoms, treatments, etc. Along with some other individuals stories (male and female): Male Pelvic Pain

Here's Robert's story:

About 6 months ago I woke up with pelvic pain.Initially my family doctor was convinced I had an infection causing my penile ache and testicular pains. I was prescribed a 10 day course of antibiotics (doxycycline) and sent on my way. These did not help at all, about a week into the antibiotics I ended up in the Emergency Room with severe testicle pain. They did an ultrasound and found no abnormalities, the doctor in the ER prescribed my a different 10 day course of antibiotics (levoflaxin) and sent me on my way diagnosing me with a testicular infection called epididymitis.

A few months went by and I still had debilitating testicle pain and penile pain so I scheduled with a urologist, I thought that surely this would be the solution to my problem. He spent about one minute examining me, checked my prostate and my testicles only to tell me there was nothing wrong and he thought it was all in my head. He asked if I had "contacted any hookers in my area," or "Been through a recent breakup." It was a very depressing visit and I was left, again, with no answers.

I immediately sought to find the most knowledgable urologist in the city, so I scheduled an appointment with the director of urology and urological surgery at the largest hospital. We scheduled another scrotal ultrasound and a kidney ultrasound, both were normal. We scheduled a cystoscopy where the urologist uses a flexible scope to look inside my penis, all the way to my bladder. Nothing was abnormal, the surgery left the urologist telling me "I'm sorry I cannot help you."

By this time I had already came across pelvic pain and pelvic floor dysfunction on the internet as a possible cause for pain in the private area. I asked for a referral to the only pelvic floor specialist in the state and he angrily told me NO. He did not think that was my problem and he began to degrade physical therapists saying, "They are not doctors, they cannot help you." He went on to tell me, "You should not be diagnosing yourself or looking for answers on the internet." I was naked, other than a hospital gown and I had just undergone a very personal and painful procedure and he was yelling at me for requesting a referral and trying to find someone who could help. He left me in tears and prescribed me medication for men with enlarged prostate even though I had no prostate issues. I tried the medication, I got dizzy and nearly fainted each day that I took the "alpha-blockers" so I stopped after 4 days.

I then went and contacted the pelvic specialist. Based on my symptoms she told me she believed PT could help me at least some, and she has 3 male patients on her workload already. The first appointment we noted my pelvic floor muscle activity was 10 microvolts, 2 microvolts is normal. This meant my muscles were in constant spasm. Through biofeedback and trigger point release, the internal kind, my baseline has decreased on the "Chronic prostatitis/pelvic pain" scale from a 31 to 25. I've only been going for a month or so. I also found that the PT I'm going to hosts a pelvic pain support group monthly in their lobby, although I'm the only male I found the females to be very supportive and the first meeting we spent 2 hours discussing our stories. I plan on going to all the future meetings.

I hope biofeedback and internal release has benefits for anyone else suffering. Internal myofascial release has shown the most improvement in pelvic pain in all the studies I've found. I know how demoralizing and stressful all this can be. There is not a cure for these types of conditions, so striving to maintain happiness is all we can do. It's nice to see that others are making the most of their experience. Together we can fight Chronic Pelvic Pain.



The next person I spoke with was Desiree, she sought me out and we e-mail back and forth frequently. She recently started her website (Our Pelvic Pain Stories) where she is posting other pelvic pain stories (including mine and Robert's).

Here is Desiree's story:

Hello, my name is Desiree, I'm 20yrs. My pain started at 14yrs old after being prescribed birth control for premenstrual dysphoric disorder. Soon I developed yeast infections then bacterial infections. Finally after several months my doctor decided to check me again for either yeast/bacterial infections and to both of our surprise there was nothing there. She then said you have vulvodynia.......I was in shock because I've never heard of that before.I decided I needed a second opinion so I went to shands hospital and was told I needed to work through the pain however pushing through my pain makes it worse. Next was florlida hospital where I was told I had an STD which was totally insanse because I'd never had sex. Needless to say we didn't go back there. From there we went to Miami where we found a doctor who was suppose to be educated but ended up causing more damage with steroid creams. I searched for days on the computer for a doctor who could help me and finally came across an educated doctor. She did the q-tip test which was very painful which is why I found out I had vestibultis, but I also have vuvldoynia which is unprovoked pain. She was able to rule out any infections and skin conditions by taking several biopsies. After starting medications she sent me to physical therapy, I was very nervous as I was thinking how awkward this would be (I was only about 15 at the time) but she is a wonderful therapist and made me feel comfortable.....I went to her for 3 or 4 yrs and have made a lot of progress over time. The pain was still intense even with PT and meds so the next step was to try nerve blocks and trigger point injections. Those gave me a little relief but not much. Next I decided to try a neurostimulator for pain before urination....that was the worst surgery I've had, because I had to be awake for part of the surgery. I just remember sobbing and feeling pain. Once I healed, the box located in my back wasn't working properly. It shocks me and is slowly bulging out of my back so I'll be having it removed very soon. Finally after a few years of every treatment available (except Botox...insurance won't pay) we decided to do the vestibuletomy. The surgery went perfectly, and I healed very well. The surgery did take the edge off my pain which I'm very happy for but still in terrible pain. Since then I've been continuing therapy and looking and hoping for new treatments that will be becoming available.





Please check out their websites, and if you have a story to share contact Desiree, Robert and I. We all have the same goal: To raise awareness and offer support when we can!

HOLY MOLY I think my pain is decreasing...

Sorry I haven't updated in a while, I got my dilators, I even took pictures for you guys but my laptop USB cord adaptor doesn't seem to be working, so I'll post pictures as soon as I can. I haven't used the dilators yet though, soon! Within the next couple weeks.

But Holy Moly, amazing thing after amazing thing keeps happening!

Two nights ago, I was in the bath and I touched just about every possible area on my labia, I touched the vaginal entry and I touched the clitoris (I was and am most scared about that spot) but there was no pain!

Last night, before going to sleep I just let my hand and finger sit down there, I pulled the skin back near the vaginal entry, I touched, no pressure and no pain.

This morning I had my physio appointment, and she was amazed at what I was saying (I brought the dilators to the appointment), she decided she would try some connective tissue massage with her finger today. I was super nervous! She was good, took it slow, told me each step she was doing as she did it, etc. She was putting pressure on the perineum, and I believe she inserted her finger slightly into my anus to put pressure on the pelvic floor (I’ll have to confirm, I was pretty distracted with self-talk and deep breathing and didn’t quite hear everything she was saying). Buuuuuuut... I felt NO pain!!!! She only did the pressure massage for a couple minutes, but it still seemed like an amazing feat. She said she may try with the smallest dilator next week or may do more with her finger. Either way I left feeling quite excited! I just can’t wait to see if this improvement continues! My fear is starting to dwindle away the more these events happen, but I still feel a bit of fear lingering about the dilators.

Haven't tried vaginal penetration yet, but I still can't believe there's no pain around the entry... I'm just, I don't have words to describe how I feel.

Thanks to all of you for your ongoing support! I will continue to update, I've also had a couple of readers share their stories with me lately and have gotten their permission to share their stories in a post. Because my story doesn't necessarily relate to everyone reading, each individual I talk to seems to have slightly different symptoms and treatments. So hopefully these stories will help others that suffer slightly differently than I!

Thanks again everyone!

More Dilator Tips!

Found this great article this morning! My dilators are in shipping, should be here any day, excited and nervous.

Also had my first physio appointment last week, felt horrible doing the connective tissue massage (I've always disliked that part) but the aftermath was great, felt really great the rest of the day!

How to be Successful with Dilators

Lidocaine and our Neurons

All my treatments are going to be starting back up in the next couple of weeks and I will have more to update you all on then!

Until next week though, I have an interesting fact to share with you, that I learnt today about lidocaine ointment.

My description below may not be entirely descriptive, but it's the way it was described to me:
Lidocaine acts as an anesthetic by blocking sodium channels in our neurons (in our axons of our neurons). But for the drug to actually work, you must depolarise the neuron first! Well how do you do that? After applying the lidocaine, you must actually provoke the pain you're trying to numb. By causing this pain, the neurons depolarise, the drug moves in and blocks the sodium channels, and we get the numbing sensation that blocks our pain.

I'm wondering if this is partly why I never found a lot of relief from the lidocaine (or thought I didn't find relief). I expected it to prevent all my pain before actually causing the pain. The moment I felt pain, I stopped any penetration causing it and came to the conclusion that it wasn't working.

I may have to give it another try and remember this little fact. Quickly cause a but of pain after applying it, then the numbing/pain blocking will take place.


Something quick and extra I found - Wikipedia definition of how lidocaine acts as anaesthesia: Lidocaine alters signal conduction in neurons by blocking the fast voltage gated sodium (Na⁺) channels in the neuronal cell membrane that are responsible for signal propagation.^[28] With sufficient blockage the membrane of the postsynaptic neuron will not depolarize and will thus fail to transmit an action potential. This creates the anaesthetic effect by not merely preventing pain signals from propagating to the brain but by stopping them before they begin. Careful titration allows for a high degree of selectivity in the blockage of sensory neurons, whereas higher concentrations will also affect other modalities of neuron signaling.

Fear of Pain

                Again, sorry for only just updating you all! I saw the psychologist on Tuesday, and we actually finished our two hour appointment early! We’re running out of things to discuss and work on, treatment has definitely been working, and the biofeedback only gets better and better each week we do it (taking a break until the new year though).

                One thing we discovered in my psychologist appointment though is that I seem to have a fear of pain, but not all types of pain. She wanted to try an exercise where we would hold our arms straight out to the sides for three minutes and notice and discuss our thoughts about the pain, but the problem for me is that I am not fearful of that aching pain. I’m fearful of stabbing pains. The stabbing I get in my vulva/vagina, the stabbing from the needle of a blood test, pin pricks, etc.

                She didn’t quite understand why I was fearful of one and not the other, but she did give me an assignment! For a few days straight, I am to use a toothpick and poke myself on the arms, the stomach, the legs, hands, etch to see if I can reduce my anxiety level of that sensation, and once the anxiety level has decreased, to use the toothpick to poke more sensitive areas (areas with more nerve endings) like my lips, or my breasts. The more I do it, the more I might find that it’s not painful and that it just gives a sensation!

                I haven’t started yet, but I’m excited to because once that anxiety decreases I can really start to localize my vaginal pain. As of right now, I’ve discovered I don’t have pain between the sides of my clitoris and my labia, but I’m worried I have pain at the base of my clitoris and so have been avoiding the area and been too scared to touch it to even discover if it’s painful or not.

                That’s all I really have to say! I feel like my pain truly is decreasing! Even though I didn’t really have a baseline. Life has been good, excited to start again in the new year with my treatment.

                Merry Christmas guys (and happy holidays) AND Happy New Year!

                Psychologist: $225.00

                Transport: $52.00

                Total for the day: $277.00

                Total Psychologist fees up until today (not including travel expenses): $975.00

 

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

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!

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

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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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!

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).