July 29, 2008

From The Things Couldn't Get Any Worse Department...

Now this may shock you, but I make a point to get a Brazilian Bikini Wax every month. That probably sounds like sheer torture, but after doing it for 2 years, it's not so bad. And having a nicely maintained crab claw makes me feel less ashamed of that part. It may cause me a lot of problems, but at least it looks pretty.

After my first Brazilian, I got down on my hands and knees, spread my cheeks and snuck a peek. I wanted to see how thorough it really was. To my surprise, I discovered a freckle near my leather cheerio. I thought it was kinda sexy, like having a beauty mark. Cindy Crawford wishes she had this freckle!

Well two years have passed and that sexy little beauty mark has grown to be at least 10 times its original size. I'm sure most of you out there are pretty comfortable with a hand mirror by now. I was doing a routine check to see what was going wrong down there this week. While I was down there, I thought I'd take a look at my cute little freckle. It's not cute any more!

It's important to keep an eye on all your moles and marks. From afraidtoask.com, here's the ABCs of Mole Warning Signs:

Asymmetry can be assessed by comparing one half of the growth to the other half to determine if the halves are equal in size. Unequal or asymmetric moles are suspicious.

If the mole's border is irregular, notched, scalloped, or indistinct, it is more likely to be cancerous (or precancerous) and is thus suspicious.

Variation of color (e.g., more than one color or shade) within a mole is a suspicious finding. Different shades of browns, blues, reds, whites, and blacks are all concerning.

Any mole that has a diameter larger than a pencil's eraser in size (> 6 mm) should be considered suspicious.

If a mole is elevated, or raised from of the skin, it should be considered suspicious.

I was concerned about my mole, but I didn't know who to contact about it. I called my dermatologist and asked his assistant if he would look at a mole about an inch from my anus. She said, "Hmm, I'm going to have to call you back about that one." Fortunately, my dermatologist was willing to look at it. Now this man looks at my face, the thought of him a few inches away from my chocolate starfish was troubling.

At his office, I undressed from the waist down and he used a paper sheet with a hole in it to maintain my modesty. His nurse was in the room. I was lying on my back and he pulled my cheeks apart and poked around for what felt like an eternity. Finally he said, "Get dressed and I'll take to you in the office."

Great... He told me that I had an atypical mole that needed to be removed and biopsied. Unfortunately, he didn't feel comfortable removing it himself because of its proximity to my cornhole. He told me to try my gynocologist or a surgeon. My vulvodynia specialist happens to be both.

My dermatologist wished me luck and told me to tell him how it turned out. He said, "I have to tell you, this is the first time in 40 years I've ever seen something like that."

"Well I'm happy to be your first," I said.

"No you're not." We both had a good laugh.

That brings me to today. This evening, my vulvodynia doctor is going to shave the mole off my big brown eye.

I'm afraid to even ask what else could go wrong down there!

July 25, 2008

Vulvodynia and Your Period: Not a Pleasant Combination

Just Another Bitch In Heat

There is no woman alive who enjoys having her period, but for someone suffering from vulvodynia, it can be much worse. It's difficult to find sanitary products that don't cause irritation and pain; and you have to use something.

There are plenty of days when I go without panties. It's much more comfortable, but I don't have that option when Aunt Flow pays me a visit. Obviously, panties alone are not enough keep my pink from turning red. Gross, I know.

I used to use Always with Wings, and long before I knew the pain of vulvodynia, my skin would get so irritated. I would break out into rashes, but I thought that was the way it had to be.

I started using tampons young and I learned quickly that Tampax is the most uncomfortable female product on the market. If there isn't enough fluid to keep a Tampax tampon moist, it rubs against the inside of you like sand paper. The worst part is trying to take a dry tampon out. It's like intentionally giving yourself ropeburn.

OB's with applicator are the way to go, but their not available everywhere, and frankly, I want an applicator. I don't want to walk out of the stall in my office bathroom and look like I just left a crime scene!

As my vulvodynia got worse, my choices grew more and more limited. My skin would become inflamed I used a tampon for too long. But if I just used pads, the excessive moisture would cause me to develope a yeast infection.

What could be better than closing out your period with a raging yeast infection?

A few months back, when I was searching the web for information on vulvodynia, I stumbled across Glad Rags. At first, I thought the website was a joke. The name is a little vulgar, even for me. I decided to give the product a try and I've been pleased. Glad Rags are reusable cotton pads that allow your skin to breathe. They're a little bulky, but so much easier on my hatchet wound. On their website, they even have a testimonial section from women with vulvodynia.

Now, Glad Rags are my first choice. But, if I'm expelling a great deal of baby juice, I use a tampon. While the tampon is more painful, and there's a greater chance I'm going to cause a flare, I just find the whole experience so disgusting that I'd rather deal with some pain than feel like I've sprung a leak.

It's never pleasant to have your period, especially with vulvdoynia, but I've found a way to make it slightly less miserable.

July 21, 2008

Followup on First Vulvodynia Online Support Group Meeting

Last Thursday night, I held the first vulvodynia online support group and I think it was a success.  I had two lovely ladies join me to discuss life with vulvodynia and I learned a tremendous amount from them.  

I felt a great sense of camaraderie.  One woman said whenever she wore a skirt there was always a big ball of panties in her pocket!  That's me every day at work.  I arrive at the office in panties, but I generally take them off during the day and keep them in my pocket or in my bag.  I thought that was hilarious.  It's a silly little moment that no one else could appreciate.  And it's certainly not a moment that I thought anyone else had experienced.

I think the true purpose of a support group is to make one feel some sense of normalcy, no matter how fleeting.  

I want to thank the two women who joined me last Thursday.  I hope our time together brought them some comfort and maybe a smile.  I am extremely grateful.

July 17, 2008

Reminder: Vulvodynia Online Support Group Meeting Tonight

Tonight at 8:00 EST, I will be hosting the first Life with Vulvodynia Online Support Group Meeting.  

The mission of the Life with Vulvodynia Online Support Group is to offer women the opportunity to discuss their condition with fellow patients in a non-threatening environment.  This support group is designed to encourage Hope, Education & Communication.

Rules of Etiquette

1. Please be respectful of everyone in the group.  We are not competing for who has it worse.  We're all in the same boat, and we know how difficult it can be.

2. Please remember this is intended to create a positive environment, so please keep your negativity in check.  I know this can be a challenge given the subject, but it is necessary for the success of the group.

Here's How It Will Work:

-The chat will be held in the left sidebar on this page.

-Log in to participate by giving a username and a password.

-A topic will be introduced and then everyone will be invited to share her insights.  If you don't have a comment, you can say, "Pass."

-Only after everyone has spoken will the floor be opened to discussion.  

-There will be a limited time for each topic

-The meeting will last one hour

July 15, 2008

Vulvodynia Pain Management: Putting Off the Pudendal Nerve Surgery

I've been grappling with whether or not to go through with my surgery for the last month.  I was scheduled to go under the knife in August, so I had to decide quickly.  

I had been in a terrible flare for nearly 2 months, and surgery seemed like my only hope.  But the flare finally subsided 2 weeks ago.  Since then, I've lost that sense of urgency.  I began really thinking about what surgery would entail and the possible outcomes:  

-I could get better after the surgery
-I could stay the same
-I could get worse

The question was: am I ready to put myself through such and ordeal for those results?  Worse than that, there's nothing after surgery.  It's truly the last resort.  I'm not ready to explore my last resort.  As bad as things can be, I'm terrified that they could become worse.  You can't undo surgery. 

Right now, I have a lot of options.  I can increase medication, change medication, increase compound use, change compounds, and most importantly, I can change my routine to truly accommodate my physical needs.  

I've fought long and hard to have the kneeling chair and the height adjustable work station, but I don't always use them.  Some days I'm tired and I just want to slouch in a normal chair and limp my way through a work day.  By the time I leave work, the consequences of that decision are evident and often the flare I've created lasts for days.  

Obviously, I'm not doing enough personally to avoid pain.  I need to do more.  I'm now treating my lady parts like fine china.  No more sitting in normal chairs at work.  I stand most of the day and when I get tired or I really have to concentrate on computer work, I'll use the kneeling chair.  I've been able to avoid a long-lasting.  I'm still in pain for portions of the day, but, thank God, it's passing.  

At home, I recline as often as possible.  I'm very conscious of how I arrange myself on any piece of furniture.  I also have to be careful sitting down and getting up.  

The other night I was in a hurry to get in the car and my butt hit that seat too hard at just the right angle.  Pain started immediately and there was nothing I could do to reduce it.  On the ride home, I was worried I had started something terrible.  But I reclined for the rest of the night and by the next morning my pain level was back to zero.  

I'm learning to really listen to my body.  As soon as I start to feel uncomfortable, I know that something has to change.  I've been relying on my doctor and medication to make me better, but I haven't done enough personally to make myself better.  

When I come to the point where I can no longer avoid the pain, I will know that it is time for surgery.  But while it is in my hands, I'm going to do everything in my power to manage my own pain.   

July 14, 2008

Guest Blogging on Vulvodynia

Last week an article I wrote was published on the Body Chronic site.  The title is "Chronic Pain in the Office: How to Work Through It." 

In the article, I summarize my experience getting accommodations at work for my chronic pain.  I've written about this issue a number of times here, but this article brings the whole story together.  

If you haven't seen it yet, please check it out.

July 1, 2008

First Online Support Group Meeting: Thursday July 17, 2008

I have received a wonderful response from women interested in participating in an online support group, so I'm thrilled to announce the first meeting will be Thursday July 17, 2008 at 8:00pm (EST).  

Please join me and other women to share your experiences and methods for coping.  The first meeting will be a chance for women to introduce themselves and explain a little about your condition.  I'll post an agenda as we get closer to that date.  

It's very easy to participate from anywhere.  All you need to do is type a name in the name field and post your comments.  The chat box should refresh automatically.  

Thank you so much for your interest.  I look forward to chatting with you all soon.