October 6, 2008

I'm Officially Coming Out of the Blogger Closet...

Hi, my name is Quinn and I have vulvodynia and pudendal neuralgia. (Sounds like an AA meeting)

As I've become more active in the online vulvodynia community, I've felt compelled to use my name and not an alias. This is who I am, this is what I live with and I shouldn't be ashamed.

I made the decision to use an alias because I thought my family would be embarassed if they knew I was sharing the woes of my cha cha with the entire world. Over the last year, I've become more open with my family. They all know what's going on down there and a number of family member have read my blog.

I think reading my blog has helped them understand me and what I've been through. The first 4 years were rough both physically and emotionally, but I couldn't talk to anyone about it because I was so ashamed. I didn't think anyone could understand. I thought I was completely alone.

I have a completely different life now. I'm well both physically and emotionally for the first time. The last real demon clouding my mind, annorexia, is in a state heibernation. I'm fortunate to have the love and support of my family.

My mom frequently asks me, "how's your part?" She hates the word vulvodynia because it sounds like vulva, but she like the name pudendal neuralgia, although, she can never remember it. Baby steps, right?


Esther said...

Go you! I know how you feel. I still haven't really told my brother about it, one of the closest people to me in the world. Baby steps...it's probably time.

Lora said...

Good girl!
I've been open about certain aspects of everything that is going on with me, but others I've just shut down. So often, the minute you suggest that your crotch hurts people start pegging you as an STD-infested mess. Not that there is anything wrong with that...

GRRR. I'm proud of you!

Jeanne said...


Good for you for being able to talk openly about your medical condition!

I just found your blog link from the IC Disease site.

I actually just wrote a lengthy post about vulvodynia earlier today on my blog.

Also, I just learned of a website in Poland that is working hard to increase awareness there about vulvodynia (see my post for more info... the awareness in Poland is not good, from what the email I got from them said).

Anyway, I have had 2 nerve blocks for groin pain (which the pelvic pain specialist thought was an entrapped nerve).

After having the 2 nerve blocks and putting off surgery for 4 years with seriously "off-the-charts" pain, I finally had surgery in January 2008 to cut the genitofemoral nerve. (This was my 6th laparoscopy and I also had a laparotomy - major - surgery). I have endometriosis... fun!

Anyway, there were complications with the nerve-cutting surgery and now the pain is worse than before! They ended up cutting the lateral femoral nerve too (long story). I now have phantom pain. The ONLY thing that helps it is acupuncture.

It hurts to sit, drive, or do anything requiring my leg being perpendicular to the trunk of my body. Since standing for any length of time is tough with my neuropathy (feet especially). That leaves only lying down.

With my fibromyalgia, even lying down can hurt. So that leaves no positions left!

I have vulvodynia/vestibulitis as well as the entrapped nerve that they cut. I have many, many other chronic illnesses (see my blog for the tip of the iceberg about some of those).

Anyway, I just wanted to pop in and let you know that you are not alone.

Have a great day!

Jeanne :)