October 5, 2009

The Mission of This Blog

I started this blog to share my story with other women, so they would know they weren't alone. I also wanted to let women know that there are treatments available and share what has worked for me. Most importantly, I wanted to show that it was possible to continue to LIVE with vulvodynia.

Let me take this time to clarify: vulvodynia does not have to be a life sentence, but I think that pudendal neuralgia is. Pudendal neuralgia is damage to the pudendal nerve. It is unlikely that damage will heal on it's own and even surgery offers no guarentees.

I don't think there's a magic cure for either afliction. I think it is something you have to work for every day to ensure that you are as comfortable as possible. It is in that vein that I share my experiences. There are oral and topical prescriptions that I take and physical accomodations that I make daily to avoid causing myself any pain. I have good days and bad. I try to share them all.

There are days when it does get to me and on those days I go to this blog to share my sadness and frustration. I do so with the hope that others will feel a sense of connection and understanding.

It is NEVER my intention to make others feel worse about their condition. If my words have caused any of you to feel dispair, I'm so sorry. I'm not a medical doctor, I'm not an expert. I am only one person sharing my pain and my experience on the internet.

I am successfully living every day with vulvodynia and pudendal neuralgia. I've had to change my life to work around it, but I have an active sexlife and I even have days with no pain. I just take one day at at time and try not to focus on the big picture.

13 comments:

Esther said...

"Try not to focus on the big picture" -- so right! And I'm just waking up to it. Common knowledge is that the big picture makes us feel better, but actually it makes life a lot harder. Focusing on one day at a time is what's keeping me going. Thanks for the reminder, and best wishes for getting out of that flu.

Natalie said...

Dear Quinn,

Whoever anonymously posted that comment is..."IMO" an idiot.

It really upset me that they don't understand the point of your blog.

Here's a story of mine:

One night I was bawling my eyes out and I couldn't find anything to comfort me, I was just an absolute mess. I was dying to find someone with the same problem I had, someone who understood my pain - I found your blog.

And over the course of two nights, I read your entire blog until I was completely caught up with you and your goings-on. Your blog gave me strength and hope and knowledge I never had before. It gave me an urge to try and fight to get better and to better understand my disease, it never made me feel like crap about myself.

It made me feel like I was still a woman.

But, there's always someone out there who has to try and spoil everything for everyone. Or maybe they just can't accept their own problems and want to live in a world of rainbows and butterflies.

Lora said...

I think your blog is wonderful. I think it's even more wonderful that late at night when I do feel that all of this is hopeless I can think of you (and Esther, and everyone else) knowing that you feel the same way. Whether we truly are hopeless or not remains to be seen.

But we're in this together, and for that I thank you.

Beth said...

I check this blog every single day. No pressure, but that's how much I rely on your insight, humor and information about these conditions! It really just hit home for me what you said about PNE. I had the decompression surgery almost 18 months ago, and while I am better, I am not healed. It's frustrating explaining to everybody from my husband to my mailman that this is something I will probably always sturggle with. Thanks for backing me up!! ;)

K said...

I don't really see what the problem is, I think you're cool.
To say that other women who read this will automatically assume that all vulvodynia everywhere is permanent forever and abandon all hope ye who enter here, based on one person's account is,
Underestimating other women, I think.

It's your blog u write what you want. I thought that was the whole point of a blog.

Anyway in summation, I think you're cool. Mad Peach is cool too. And the others who were not singled out. Sounds like a fine mission statement to me.

AK said...

I remember studying for the bar...being in so much pain and desperately googling "how do people live with pudendal neuralgia?" (or something like that). Your blog came up and I read the whole thing...it was so nice to know that someone was out there struggling with the same crap. So, thanks.

Anonymous said...

Hi
I have vulvodynia as well. When I first got mine, I was terrified. I had just gotten remarried, and I was confused, more than anything why, after years of an abusive relationship, I would be tormented when I was finally happy. Needless to say my "prince - charming" couldn't handle my diagnosis, and it drove us apart. That was 3 years ago.
I went to many doctors. A few of them scared me to death and told me that I had herpes without visible sores. WTF? I took a blood test and it came back negative, but the trauma of all of it was terrible. When I was finally told that I had vulvodynia, I did so much reading about it, but it was all the same: it comes and goes, no reasoning for it, mysterious, etc. There have been a few times I thought that herpes would be better because at least then I could have some medicine that would make the pain go away and the pain would only be there for a definite period of time.
When I read up about it, I saw the part about thin skin as well. I have always had sensitive skin, so no matter what, I put a thin coating of vaseline on everyday. If I swim, I put a big glob all over it. I put on a lot before sex. It helps significantly-- like 110%. I wash with warm water everyday (I get built up smegma too-- the vaseline fills in some of folds, making it easier to clean), and the vaseline has helped the elasticity and integrity of the skin, and also guards against sweat, panty rub, hairs, and whatnot. It been more valueable to me than any of the 100 medicines I've been given.
I'm with a new man-- we've been together about a year and a half. He is so kind and awesome. We have what we call "sexy fun" a lot. "Sexy fun" does not involve intercourse, but rather everything else where we both (usually- depending on my pain level) get off. It's very satisfying. I have trained myself to feel somewhat separate from my pain. I allow myself to feel sexy and turned on even when I have pain. Obviously, intercourse would sometimes hurt too much, but sexy fun keeps my man satisfied and me happy too.
My vulvodynia is worse in the summer as well. This past summer, I went through hell for almost a month. I tried so many things and checked myself out so many times that I irritated it even more. All the skin peeled off from when I used diaper cream on a recommendation from another vulvodynia friend (I am, apparently, allergic to this)-- I thought I was going to cry every day, especially since we were vacation for most of the time.
Keep your chin up girl. I am so happy to hear that you are getting married. You have lots of support from your online community, and your mom sounds great.
If you want to respond, my email is grammargirlie2000@yahoo.com.
Have a great honeymoon.
-Suzanne

Kim said...

Hi Quinn. I check in on your blog only occasionally, most often when I'm having a flare. I'm one of the "lucky" VVD sufferers - I only have a flare maybe 2-4 times a year, lasting a week or two each time. But when it hits, I'm MISERABLE, and it helps to know there are fellow sufferers out there.

Pay no attention to that anonymous poster! Yes SOME women recover completely, but many of us have to learn to live fulfilling lives with vulvodynia, and you are doing a good thing in showing that it can be done. (And I hope finding comfort and inspiration in blogging!) I've had this condition for over 25 years, and managed to get married, have and raise 3 great kids, and mostly enjoy my life, family and hobbies.

Feel better!

Rebecca said...

I just stumbled upon your blog when trying to find a vulvodynia support group, but your blog is better than any support group. It gives me hope and it is so great that you are open about all this and sharing your story with everyone.

Quinn said...

Thank you all so much for your support! It makes me so happy to know that other women can find some kind of comfort from this blog.

I'm finally home from the honeymoon and I have much to write. I'll post soon.

Thank you all again.

Anonymous said...

Hi,

I am new to this blog along with this disease. My daughter who is 16 was diagnosed with this last week. She has been sick with this for about a year. We just did not know about it. Her Dr. would say its a UTI or a yeast infection. Prescribe her medicine and that was it.

I have a question, how do you handle people who are not familiar with this disorder? The school nurse is driving me nuts. Because my daughter will have good days where the pain in managable then she has other days where she cannot walk or sit.

I feel so much better (I do not mean that in a bad way because this is a bear to deal with) that there are other women out there with this. I feel like my daughter is getting depressed over this and I just do not know how to help her. I am giving her the ointments and listing to her and doing all of the mom things. I am just rambling now.

Any advise would greatly be appreciated.

Thanks

Quinn said...

Dear Anonymous,

If you would like to email me directly about your daughter's condition, you can do so at lifewithvulvodynia AT gmail.com

Obviously discussing this condition with other people is somewhat indelicate and uncomfortable for all parties involved.

For a school nurse, it seems quite reasonable to be completely up front and tell her exactly what vulvodynia is and maybe give her a good website as a reference. www.nva.org is a good one. I would hope that he or she would do their best to understand a condition they may have never heard of, but that may be a naive wish on my part.

For teachers and family members, I generally prefer to say I have a pain condition that makes sitting uncomfortable. Most people jump to the conclusion that it's a back problem and that's fine with me. As long as it's something they can sympathize with, that's good enough for me.

The diagnosis of a chronic pain condition at any age can bring on depression. I can only imagine it's even worse when you're a teenager. It sounds like you're doing a good job to help your daughter.

She may want to consider professional help to deal with this condition emotionally. Many of the women I've talked to see a therapist and quite a few are on antidepressants or anti-anxiety medication.

I'm so sorry your daughter has to deal with this diagnosis at such a young age. She's lucky to have your support and understanding.

Quinn

Anonymous said...

Oh thank you so much, I have so many questions. I tried to emaii you and for some reason it would not go thru. Can email me at eltray.bi@verizon.net and then I can forward you an email back.