Vulvodynia Sufferers 8x More Likely to Have Interstitial Cystitis

1 in 6 women have vaginal pain in their lives. (Photo: hyperscholar)                 .

I lived with vulvodynia for 10 years.

You’ve probably never heard of it, even though it’s so common. Basically chronic vaginal pain, to put it mildly.

I never had interstitial cystitis, but it’s chronic bladder pain. These two kinds of pain tend to run together. We found a strong association between the two, which independent studies published this year also confirm.

Here’s what we found…
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Women at CureTogether who report vulvodynia are eight times more likely to report interstitial cystitis than women with no vulvodynia. This comes from a study of 724 women sharing data online for the past year.

For details on this finding and how it matches up with other studies, read on…

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Details of the CureTogether Vulvodynia-Interstitial Cystitis Finding

Among 179 people reporting vulvodynia in this study, 59 (33%) reported also having interstitial cystitis, and the remaining 120 specifically reported not having interstitial cystitis.

Among 545 people reporting “no vulvodynia” in this study, 22 (4%) reported having interstitial cystitis, and the remaining 523 people specifically reported not having interstitial cystitis.

This 33% vs. 4% difference represents a statistically significant relative risk of 8.3, with a 99% confidence interval of 4.5 – 15.2..

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Other Vulvodynia-Interstitial Cystitis Research

The importance of this finding is that using only self-reported data, we have found an association between vulvodynia and interstitial cystitis that has previously been explored only in clinical studies such as the following:

1. A 2009 mailed survey to 416 women showed 62% of IC patients had vulvar pain in the past year – http://www.ncbi.nlm.nih.gov/pubmed/19718938

2. Based on a study of 70 women, vulvodynia and interstitial cystitis were found to be clinically correlated, and the authors suggest further research is needed – http://www.ncbi.nlm.nih.gov/pubmed/18038212

3. To rally a cry for more funding into women’s health and these poorly understood, painful conditions, a new alliance of disease foundations has formed, called Overlapping Conditions. Vulvodynia and interstitial cystitis are two of the conditions they are focusing on.

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Self-Reported Data at CureTogether

CureTogether has been called “Yelp for health.” It is a collaboration of people from around the world volunteering to solve real problems in chronic conditions.

People self-report and rate symptoms and treatments for over 410 conditions. The top conditions at CureTogether are depression, anxiety, migraine, back pain, and vulvodynia.

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Take a peek at the top-rated:

- Vulvodynia Symptoms

- Vulvodynia Treatments

- Interstitial Cystitis Treatments

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