Tuesday, April 2, 2013

Where have I been?

I did want to let my readers know, with my sincerest apologies why I haven't been blogging as much as I'd like (which is daily since I love to share cool things with you). For 10 years I've been dealing with a very painful pelvic condition that has been flaring up again, since this past August. I'm going to write about my condition (vestibulodynia or dyspareunia) in the hope that it will help someone to get the help they need. Writing or speaking about this pain can be uncomfortable for many people, but one in four women will have a pelvic pain issue, and too often they're too embarrassed to talk to their doctors. I want you to know that you're not alone and there is help out there.

Let me explain my pain. Many of my leg and hip muscles have tightened so badly (from my pain) that sitting for long periods hurts. My vestibule - the vaginal opening - was so sensitive that I couldn't wear pants back when I was diagnosed correctly in 2008. My specialist, Dr. Richard Marvel in Baltimore, diagnosed me because I jumped off of a table in pain when he touched my vestibule with a Q-tip.  Obviously, I couldn't have sex without pain, either.  

I had surgery five years ago to remove some of the most painful tissue. In August my pain flared up again, badly, and I've been in physical therapy since October 2012. Right now I have an awesome team of doctors and physical therapists, including Dr. Lara Burrows and Amy Senn at Summa Healthcare in Akron. They are doing everything they can to help - with medicine, physical therapy and mental therapy that have helped me to feel better and cope with the pain when it flares up. I'll be attending a medical conference for patients with my condition (and similar conditions) in April. I plan on telling you all more about this because if those of us with these conditions don't speak up there won't be money invested for research to help us find solutions. 

The conference I will be attending is the Alliance for Pelvic Pain

Here are a few organizations with helpful information, The National Vulvodynia Association and the International Pelvic Pain Society.

You are welcome to ask me questions, though I am not a doctor. And if you go to a doctor and feel as though your concerns were not addressed you can look up doctors on the sites listed above. Keep persisting until you find a doctor that listens to you.

If me speaking out about this helps one person get help for their issues, it was well worth it. 

And I will continue to post more art and jewelry.


Kelly Heck said...

Thank you for sharing your story Valerie! Sometimes it takes a little discomfort to help others, and sharing your story certainly WILL HELP OTHERS. Women are too quiet about problems like this. I'm proud of you and look forward to hearing more about the conference!

Valerie A. Heck Esmont said...

Thank you Kelly, hopefully me speaking up will help others do the same.

Charles Runels said...

There's a new treatment for dyspareunia to cause stem cells to generate new healthy tissue. The procedure is called o-shot which has been very effective with my patients.
More can be seen at OShot.info and http://yourfemalebody.com/dyspareunia
Hope this helps.
Charles Runels, MD

Valerie A. Heck Esmont said...

Thank you for your comment and link, I'll be sure to look into this. I appreciate your dedication. A link to more about the o-shot, http://oshot.info/main.html?src=%2F