Secret Suffering - A resource community for women who experience pelvic and sexual pain

Someone sent me the latest newsletter from the ICHelp website (great organization), which links to an article in Redbook magazine about sexual and pelvic pain.

It’s called Your (Very Personal) Health at 20 30 40 50. Here’s quote from the article: “From painful intercourse (which strikes women even in their 20s) to unplanned pregnancy (which happens—surprise!—to about 40 percent of women who conceive in their 40s), a wide array of down-there concerns affect women in every decade. In fact, one third of us will be treated for a pelvic-health disorder by age 60, according to a report from the National Women’s Health Resource Center (NWHRC), and experts suspect that many more of us are too embarrassed to tell our doctors about such concerns—and so suffer unnecessarily.”

I am so happy to see this. I’d love to read your comments about this article. In fact, I just posted on the article and I urge everyone to comment there as well! The more we raise our voice in the mainstream media, the more attention this subject will get. Again - here is the link: Redbook Magazine Article.

The website - www.allheadlinenews.com just published an article from Christin Veasley of the National Vulvodynia Association (NVA). People have a lot of misconceptions about vulvodynia, according to the article. To quote the article: “The cause is not associated to sex, the NVA says, but rather an injury to, or irritation of, the nerves that innervate the vulva; infection or trauma in the vulva; genetic factors; hypersensitivity to yeast; or spasms of the muscles that support the pelvic organs.” They also say that vulvodynia is not caused by a sexually transmitted disease.

According to the article, MedicalNews Today recommended a number of self-care measures, such as avoiding tight-fitting garments. Click here to read the full article.

The Times Online website has a sex advice column by Dr. Thomas Stuttaford and Suzi Godson. While not specifically about chronic sexual pain, this article on first-time sex and the fear of pain is an interesting, entertaining and thoughtful discussion about the most comfortable positions for women starting out as well as other methods to minimize pain and increase pleasure.

From the article, “The discomfort of early penetrative sex, if there is any, is usually related to tension in the pelvic or thigh muscles and/or anxiety that has prevented the usual vaginal lubrication.” For me, as a chronic sufferer, I do know that tensing up (which is instinctive at this point because of the pain) makes it all worse. (I’ll be writing more about this in our next newsletter.)

As always, we’d love to hear your comments on this article.

This NVA tutorial is targeted toward healthcare practitioners, but it’s a fascinating and helpful learning tool for those of us who suffer with vaginal and vulvar pain. The tutorial describes some other causes of the pain and ways to manage symptoms.

What’s so wonderful is that this excellent organization developed the tutorial because, “healthcare providers need educational programs to assist them in acquiring the knowledge and skills to evaluate and manage patients with vulvodynia.”

Also from the NVA site, “According to an NIH-funded study conducted at Harvard Medical School, approximately 16% of American women between 18 and 64 years of age report suffering from chronic vulvar pain at some point in their lives, with more than 90% reporting many years of pain. It is estimated that six million women may currently be suffering from the condition. According to this study, the incidence of symptom onset is highest between the ages of 18 and 25, and lowest after age 35. (Harlow BL, Stewart EG, JAMWA, 2003 and Jantos M, Burns NR, J Reprod Med, 2007). Once considered to be a condition that affects primarily Caucasian women, recent studies have shown that African American and Hispanic women are just as likely to develop vulvodynia.”

Please give us feedback after you’ve looked through the tutorial.

After all these years, researchers are finally admitting that there are numerous symptoms that intertwine with Interstitial Cystitis, and now, a five year study is being funding by several of the National Institutes of Health (NIH) and the National Institutes of Diabetes and Digestive and Kidney Diseases (NIDDK). The full-scale, multi-year study will begin in 2008 and will receive a total of $7.5 million.

The name of the program is the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Some of the conditions covered are chronic pelvic pain syndromes associated with the bladder and prostate gland, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome.

It is possible (and I sure hope so) that vulvodynia and migraine may be included. To read more about this study, click here to read the ICA newsletter.

As a footnote, Dr. Echenberg plans to apply to participate in this study. These are the very issues suffered by his patients. Dr. E has also worked with male patients who experience pelvic pain.

A medical website in the UK, Menopause Matters, conducted a study of over 1,000 women and found that 53 per cent of menopausal women experience painful sex.

Those vibrant kids lifting each other and giving their “all” for the team may be starting a spiral of damage to their spines that can eventually lead to chronic pelvic pain. In an article by Jolie Bookspan, M.Ed., PhD for the Healthline blog, she shows clearly how overarching their backs consistently can lead to problems for these young women down the road. “Overarching and sticking out in back is unhealthy for the spine, and is a major overlooked cause of ongoing lower back pain after long standing and ambulating (walking and running, for example),” Dr. Boospan says. To read the entire article, click here.