Thursday, March 17, 2011

Part I: The Pains of Vulvodynia

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

Another problem that many women with ME/CFS have is vulvodynia -- or chronic vulvar pain (i.e., pain in the female nether regions). Not surprisingly, I have this condition.

First, some definitions from MedlinePlus, Mayo Clinic, and the University of Iowa. I picked these particular websites and definitions because they made things easy to understand. The terms I am defining are conditions I have, according to my gynecologist and the pelvic health center I visit for treatment.

Vulvodynia (vŭl′vō-din′ē-ă): chronic vulvar pain.

Vaginismus (ˌvædʒɪˈnɪzməs, -ˈnɪsməs): an involuntary spasm of the muscles surrounding the vagina. The spasms close the vagina.

Dyspareunia (ˌdis-pə-ˈrü-nē-ə, -nyə): painful intercourse.

Vulvar Vestibulitis (ves-tib′yū-lī′tis): a condition which causes redness and pain of the vestibule; an inflammation of this skin and the mucous secreting glands found in the skin.

I was diagnosed with all of these conditions by my gynecologist a little over a year ago, but it is only recently that I decided to really focus on these issues.

In hindsight, I have had vulvodynia and vaginismus as long as I can remember. As a teen, I could not use tampons because of the pain, and my annual gynecological exams have always been excruciating. I have had dyspareunia since becoming sexually active, and I only learned of my vulvar vestibulitis when my gynecologist observed inflammation and redness of unknown origin.

My husband and I have been married for almost six years, but we have pretty much not been able to have sex successfully. (My definition of successful sex would be sex that I enjoy with full penetration without any pain.)

This issue is chock-full of spin-off issues. As you might imagine, the emotional toll is quite immense, as self-esteem, intimacy, and relationship issues flow abundantly. Of course, the physical toll is not a piece of cake either. The pain could be so terrible that it felt as though someone was pouring boiling water into my vagina while stabbing me with a serrated knife in the same place. I apologize for the graphic description, but I feel it is important for me to educate people who do not understand how debilitating this condition can be.

One of the main reasons I went so long without addressing my pain problems was because I was wrapped up with the rest of my health. In the grand scheme of things, being able to have sex seemed lower on the list compared to all my other chronic health problems that reared their ugly heads on a daily basis.

The other reason things went on so long is because my previous gynecologist did not believe I had a real problem. I told her of my issues on every visit, but she just kept telling me to "go more slowly," "use more lubrication," and "stretch it out." She blamed my problems on my lack of sexual experience. I believed her, so I kept making an effort. Eventually, the pain became excruciating. Little did I know that forcing it made things worse. 

I have to take a moment to mention what a wonderful husband I have. I suspect that there are not many young marriages that would survive chronic illness and little sex.

Fortunately for me, my previous gynecologist retired, and I got one who is very knowledgeable about pelvic pain. When I told my new gynecologist about my problems just over a year ago, she immediately diagnosed me and assured me that it was not my fault. She told me that I had a real medical condition and that it was not a matter of simply using more lubrication or "stretching it out." Imagine my relief to know it wasn't all in my head. (This situation reminded me of my CFS diagnosis.)

In my next post, I'll discuss the treatment options my gynecologist offered to me.


Sue Jackson said...

Wow, all of these conditions sound horrible, Alyson, and you are very brave to address them publicly like this and educate people.

I think all of our spouses deserve awards - being sick all the time just does not lend itself to a healthy sex life, even without additional problems!


Anonymous said...

I've had CFS and severe IC for almost 20 years. I am married, too, and am so thankful that my husband understands and we love each other so much that sex is just not as important as our society wants to shove down our throats. I don't tell any of my girlfriends the truth of our non-existant sex life because of the shame around this issue. OMG so thankful you have the courage to share our reality with the world. I thought I was the only person on earth who didn't have sex on her wedding night. So much shame and secrecy around this...thanks again

Jo said...

I'm so angry for you that the first gynae was so dismissive of your problems. I hope that now you can get the help you need and deserve. Your stoicism and courage is amazing.

alyson said...

Thanks, Sue. One of my goals with this blog is to educate people. It's taken me a while to be comfortable enough to write about this particular issue, but I feel good about it.

Hi Anonymous. I had tears reading your comment because I understand the emotional and physical pain you must have. The shame and secrecy surrounding this issue is one of the big reasons I decided to write about my experiences with vulvodynia. It is something I had been hiding for years, but I decided it was time for me to deal with it on multiple levels. Just remember that it's not your fault, and you are not alone!

Thanks, Jo! It upsets me that my old gynecologist dismissed my problems, too. I've often wondered how many women in the world have similar problems but have been told it's in their heads or that it's their fault for not trying hard enough. Sheesh.

Anonymous said...

Hi Alyson,
Thank you for your directness and for writing about your experience! It is so helpful for me to read what you have discovered and what you have felt. I also have vulvodynia and wanted to share a vulvodynia link that I found to be particularly thorough, maybe you have already seen it.

alyson said...

Hi Anonymous - Thank you for your note. I'm glad that sharing my experience helped. I wish you well!

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 and
Hope this helps.
Charles Runels, MD

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
Hope this helps.
Charles Runels, MD