Taking Action on My Health

So, this week I really cracked down on taking care of my Vulvodynia this week. 

I went to counselling, who encouraged me to go to my doctor.

I went to the naturopath, and I attended my weekly physio. 

My counselor put in a request with mental health .

My doctor finally prescribed me some medication to help the pain! About time! 

Lidocane Gel and nortriptyline. 

The naturopath suggested a change in diet to re-regulate my hormones. 

So, here I am taking femagen and Vitamin D3 along with a revamp of what I eat. 

Protien and Fruit for Breakfast

Soup and vegetables for lunch.

Protien and vegetables for dinner.

Nuts and fruit and cheese for snacks.

No more bread, no more processed foods. 

So far, I have been successful. Haven't had any cravings for carbs. 

Let's see how it goes. Can't hurt to change my diet. 

I might even loose some weight! 

More info to come! 

Physio!

Since my time with the Multi-Disciplinary Program has come to an end in December, I have been out in the world on my own. Surprisingly, the one element of treatment that I thought I would be unsuccessful at finding help with I did!

While, my physiotherapy with Wendy at the Pheonix clinic is not the same as the physio therapy treatment I received in Vancouver, I figure something is better than nothing! 

It's been just over a month, but I can feel my pelvic floor getting stronger! That's something. 

My biggest struggle has been with finding a mental health provider. Nobody has any suggestions for me, and not even for someone at the basic level. I finally went to the one at the university, but her availability sucks in comparison to my school schedule and it will be another 15 days before my appointment with her. 

The hardest part is that the mental is one of my biggest hurdles for improvement. I really need to get over some stuff in my head. Once I do that I can work on some other areas of my physio treatment as well. 

In the meanwhile, I'm going to have the strongest and most fit pelvic floor out there. Provided I remember to do my exercises daily, drink enough water and don't break down in tears during my appointment. 

Vulvodynia on Vacation

Pre Vacation Thoughts:

"yes, I'm going on vacation. We're going on vacation. This means lots of rest, relaxation, and lazy days. Without dogs, chores, and work, I wont have any reasons to feel stressed or uptight. This will ultimately mean more desire, my 'sexy time.' This will be great. I'll even pack some nice clothes, some lingerie, it'll be the best time EVER. Like the honeymoon I wish I had (minus the sex stuff, because intercourse = still SCARY)" 

Now Fast Forward to Vacation Reality. 

Vacation = Swimsuits, Alcohol, Changes in Diet, Salt Water

4 things that your vulva isn't a fan of. 

I'm not sure about the 'science' on last one, but I know for me when I went in the ocean, my vulva burned the minute I got out. 

Swimsuits = overly tight garment on your vulva. no beuno. 

For my next vacation must find a better swimsuit --- maybe boy shorts?

Alcohol = It's on the no list.
All I know is they suggest you cut alcohol, refined sugar and caffeine from your diet when you have vulvodynia. while I'm not a big drinker, vacation changed that, especially when the bar opens at 11, and champagne is always available at breakfast.
For my next vacation I must remember to go virgin or go water.

Changes in Diet = changes in everything.
Your urine changes, your pH changes, you body changes. It's likely to had influenced my down there.


***
Pro-Active Things I knew to Prep for Vacation

Personal Hygiene - I brought my own soap and shampoo.
I use Dove products.
But my doctors say that a simple shampoo change can change rates of pain and such!

I didn't bring any clothing I know causes troubles for me.
For me this is primarily jeans and lulu lemon pants.
I also brought baby powder and comfy underwear to prevent a build up of moisture.

.... unfortunately, that's all...

So, for you Vulvodynia sufferers out there keep swimsuits, alcohol, diet, and sea water in mind for your next vacation. We know that we will be hitting up a different location next time. 

I ordered a few books! :D

Now that my vulvodynia program has come to an end (aside from the discharge appointment in December, and the couples therapy in two weeks), I'm on my own.

In Prince George there is no physiotherapist specializing in pelvic floor therapy. And, I think I'm going to have a hell of a time trying to find a mental health provider that will be helpful. So, aside from the kind nurse at the doctors office, I feel like I'm on my own.

So, I ordered some books, and I think it'll require me to start working on the books I currently have.


What's on your vulvodynia Book Shelf? Or Women's Health Book Shelf?

Health Update

Only sort of related to today's post, but I've been meaning to share for a few days!

Doctor Recommended. 

In my last post about Vulvodynia, I talked about how the treatment process was going to unravel. It’s been a few weeks since, and I’m a about to go in for another round of physiotheraphy and cognitive behaviour therapy tomorrow. 

So far, it hasn’t been what I’ve expected. Not that I really knew what to expect, but, hey, we all create some sort of idea in my head. 

I’ve been bad. I was assigned homework from last time, and... you guessed it, I didn’t really follow through. My trouble was finding time. 

On the bus today, I did my worksheets. We had to do a cognitive behavioural square about our thoughts, feelings, behaviours and actions regarding a non sexual activity, a painful sexual activity, and then a painless sexual activity. The last one was the hardest because I just don’t. I don’t know what that would even mean. I also did my other worksheet, but the example they did up in the book pretty much hit the nail on that one. 

As to physio. I failed. I tried to consciously think of the things that she told me to do. But I still don’t know where my pelvic floor muscle is.... I can’t seem to separate it from my butt muscle and my stomach muscle (I’m not a doctor, or anyone who knows the names on the muscles, that’s just they way they are too me) 

And I completely failed at doing any mindfulness. I just didn’t have the time. That’s my excuse and I’m sticking to it! It is hard to take 10 minutes to myself to do nothing--- not when I have so much going on, and sometimes, I just want to ‘relax’ my way. 

I guess I could practice it right now on the bus... failed. 

..... I have been able to wear jeans more often in better news! 

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