Treating Vulvodynia - The Beginning

It's been almost two years since I've struggled with provoked vestibuldynia (vulvodynia) and I'm finally starting my treatment! I imagine for many sufferers of vulvodynia, my two years is petty compared to the 5-10+ years that they have struggled with finding an answer to their pain.

If you don't already know, I'm 'enrolled' in a program based out of Vancouver General Hospital! The Multidisciplinary Vulvodynia Program provides us with a 'tasting menu' of treatment options including medications, physiotheraphy and cognitive behaviour therapy (as well as some sexual seminars) --- I'll have to post a post about what I know now about sex! ---- 

This past week was my fourth trip to Vancouver for the program. My first was my assessment in July. My second was orientation. My third was a sexual health seminar. And this past week was treatment planning, physio and group cognitive therapy. 

Invisible Illness - 30 Things

I have an invisible illness. I've already blogged about it this week, but today I found out that it's Invisible Illness Week! How fantastic considering Vulvodynia doesn't really have a week or a month of any sorts.

Coincidentally, this week has been one of my biggest flare ups. I'm still stuck in leggings and tunics and itching to wear my jeans and lace tops. I bought new leggings from Roots today, 98% cotton and absolutely amazing. However, the bad/poor leggings from earlier this week have resulted in some unpleasent chaffing... but that might be a little tmi.

Invisible Illness has an opportunity for us to blog about it and share! They have a thirty things list, here I go!

1. The illness I live with is: Provoked vulvodynia

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: 2010

4. The biggest adjustment I’ve had to make is: no more sex/jeans

5. Most people assume: I'm being overdramatic

6. The hardest part about mornings are: ATM - figuring out what to wear that wont hurt. 

7. My favorite medical TV show is: A Gifted Man

8. A gadget I couldn’t live without is: Our Mimi -- (R rated)

9. The hardest part about nights are:  nothing! I'm encouraged to sleep without undies! How great is that1 

10. Each day I take 2 pills & vitamins. (No comments, please) --- those aren't for my condition, I have no treatment

11. Regarding alternative treatments I WOULD LOVE TO TRY ANYTHING 

Vulvodynia

Vulvodynia.

Have you heard that word? Do you know what it is? No? Take a guess.

It's something we don't talk a lot about. Google it, you wont find a whole lot. It's suggested in my books at home, the pamphlets at the doctors office, and the world wide web, that as many as 15% of women suffer from this condition. And yet, we don't have a big walk like Breast Cancer, and many of you don't know what it is.

Because women don't talk about sex. They don't talk about their sexual organs either. We are polite, and respectful in that way. I have decided that needs to change.

So, let's talk about our VAGINA'S! More appropriately, lets just talk about everything 'down there'.

I suffer from Vulvodynia. My specialist calls it something else, but I don't really know what she's saying, she says its basically a type of provoked vulvodynia. Which means pain the vulva region when provoked, i.e. with sexual activity such as intercourse, and occasionally when you wear pants that are too tight (like right now).

Its hard to talk about, but usually when we start talking we realize we aren't the only ones... sex shouldn't be painful, you shouldn't be in pain and you shouldn't let it take over your life... doesn't mean it wont though.

My story is that I noticed pain, and I clued in that something wasn't right.... I stopped in with my family doctor who kinda suggested it was in my head, and then visited the nurse to follow up who suggested maybe a pap test was in order....
Apparently, your pap test shouldn't be painful. It shouldn't give you nightmares, and it shouldn't be something you fear so much you don't ever know if you can do it again. After one pap test, and a second scope, I was never letting anyone up there again, especially with a spectrum, and the nurse said things just didn't look right. She thought it might be vaginismus, so off to the gynaecologist I went. With only 3 in town, and 2 having 6 +month waiting list we went to the shorter one. Two appointments later he diagnosed me with vulvodynia and said he'd refer me to a clinic out of Vancouver General Hospital.

At this point I had become a psychological mess in regards to my vagina, sexuality and sanity. My councillor encouraged me to call the clinic, but I refused, so I call my gynaecologist two months later.... only to find out that my doctor had left the practice and never submitted my paper work. At this time, I had finally found a family doctor in town who I went bawling too and the nice nurse practitioner followed up and ensured my paperwork got to the right place!

It's now September, and just over a month ago I traveled for my pre appt. I let the nice doctor lady check out my lady parts while my mom held my hand. And got the confirmation that I'd be right for the program.

So starting next Tuesday, I'm beginning 'treatments' at the Multidisciplinary Vulvodynia Clinic out of Vancouver. You can check out there website here.


Anyways, for those of you who suffer from this, or wonder more, I hope that you can follow along this journey. This isn't a blog dedicated to vulvodynia, but a blog of me, my house, and my puppies. Vulvodynia is something that sneakingly affects many parts of my life, more than I want to admit. And I find it's important that we talk about it and let women know that pain isn't 'normal.' we don't have to live in pain.

Here are some blogs to follow about vulvodynia or other like pain

Pretty with Pelvic Pain

Ouch, My Lady Parts....

Its' my life


My favorite forum --- Vulvodynia Support Forum