Monday, 21 July 2014

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!

4 comments:

  1. I'm sorry but this isn't Ebola, I have been on lyrica and amitriptyline for 8 months and have no pain left...and I was ready to commit suicide in october '13...
    of course there is a cure, tons of ladies get cured, I go to support group meetings fur vulval pain and we have had a fair number of ladies getting cured

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    1. I think there are different diagnoses and it's not fully understood yet the differences and what cures what. I was on lyrica for a year with zero relief, in fact the pain continued to get worse. We probably have different conditions. But I think that's amazing that you live pain free and pushed through your struggles to get there! Well done :)

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  2. I think I sounded mean in my first comment and I apologise, you're right, it's probably a similar condition but not quite....
    either way, I do know PT and dilators are a great therapy for this issue ...
    take care
    xx

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  3. Hi, for the last 7 years I have been specializing in the treatment of Vulvodynia with Chinese medicine and I have great success with most of my patients - most Vulvodynia cases can be significantly improved or even cured. I believe that I am too far to help, but I reccommend you find a CM practitioner at your area who specialize in Gynecological problems, and give a chance for this treatment - don't give up :-)

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