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Calling patients with CRPS and/or vulvodynia pain

As you may already know, the Interstitial Cystitis Association is a member of a steering committee of patient advocates advising Grünenthal, a pharmaceutical company that is interested in pain.  One of the projects we’re involved with is a new pilot to visualize what pain feels like, using words directly from those living with pain from people like you.  The longer-term vision for this is to have an impact on how people communicate with their doctors and how doctors better understand the experience to create treatment plans that better align with patients’ quality of life or treatment goals.

While Grünenthal is focused on pain that affects the entire pain community, this particular project is starting with just a couple of pain conditions. We recognize that some IC patients may have a co-morbidity with Vulvodynia and/or CRPS, so we are asking those people to respond.

Please see below more information about the project.  We respect your privacy and will not disclose any personally-identifiable information to the agency partner or to the company. You may reach out directly to Kathleen Kraus ( for more information about how your submissions will be used and in what format.

Thank you for helping us raise the voice of the patient through this initiative!

Calling all people living with Chronic Regional Pain Syndrome (CRPS) and/or vulvodynia pain

In an effort to raise awareness of pain symptom communication, and its importance to improving treatment and research, we are asking you to describe what your pain feels like in less than 50 words. You may wish to use a metaphor to describe your pain, such as “my pain feels like a hammer pounding.” You may also submit an image that depicts your most recent pain episode with a two-sentence summary describing the experience. Please be as specific as possible.

These submissions will inform a pilot project that aims to better characterize CRPS and vulvodynia pain by creating a visual representation of collective responses. The visuals created will be a part of a broader awareness campaign about pain communication and the impact of pain on daily life.

Please submit descriptions to and include the disease being described (CRPS or vulvodynia). All responses will be anonymous. Your privacy is of utmost important to us.