Advocacy and Research

An Interview with Alexandra Milspaw, Member of the Alliance for Pelvic Pain

By Riva Preil Alex is a licensed professional counselor (LPC) in the state of Pennsylvania. Her recently released audio CD, “Guided Meditations for Mindful Living”, is now available on iTunes, CDbaby, and Amazon.com. You may also order a copy directly from her by calling 610-868-0104, ext. 3. Alex earned her Bachelors of Arts in Sociology, Anthropology and Women’s Studies as well as a Masters of Education in Counseling Psychology and Human Services from Lehigh University. She received her Masters of Education in Human Sexuality at Widener University. She is currently a doctoral candidate in the field of Human Sexuality at Widener University. Alex is certified as a Master Practitioner in NeuroLinguistic Programming, Emotional Freedom Techniques (EFT) and Mindfulness-Based Stress Reduction Trainer. She has been working with patients suffering from chronic pelvic and genital pain for two years, focusing on the counseling and education of mind/body relaxation for stress and pain management. Alex has been running workshops for women for over 6 years. Her private counseling practice specializes in depression, anxiety, trauma and sexual health.

  1. What was the goal in creating the Alliance?

Our main mission in creating the Alliance was to expand knowledge and care to the underserved population of female patients with chronic pelvic pain. We wanted to create an atmosphere where patients felt safe to be their authentic selves and felt comfortable in expressing their thoughts and feelings. It was important to us to help these women meet each other in an effort to help them not only realize they are not alone in their experiences, but also to learn there are answers and reasons for their pain. Too often I hear from our patients I meet at Dr. Echenberg’s office that they have been to countless numbers of doctors without receiving any clear explanations for their pain and symptoms. In fact, many of them have been told that their pain is “all in their headâ€, which is a complete neglect and dismissal of their experience. Hearing these stories also lead to a main goal of the Alliance, which is to also expand knowledge to health care professionals around the country. We hope to hold educational retreats for professionals as well as patients in the near future.

  1. What were the highlights of the weekend in your opinion?

I think the entire weekend was a highlight! Beginning with Friday night’s “Meet and Greetâ€, the energy in the room was swirling with excitement and camaraderie as the participants began to meet each other and share stories. The entire lobby of Hotel Bethlehem was buzzing with sounds such as, “Really? Me too!†and “Oh my gosh, I thought I was the only one.†Watching the smiles on these women’s faces and hearing that this is the first time they have smiled and felt part of a community warmed my heart and expanded my energy for the upcoming weekend.

Another great highlight was when some of the participants gave us the idea to have a special lunch table for those under 30 years old. Watching the young women share stories and tears was sensational.

Another highlight was having the immense support of our sponsors, which provided us the ability to provide over 10 raffle baskets and generously filled guest bags for all participants. Having the “extras†always helps make an event more exciting and enjoyable! It was also great to be able to donate over $200 from the raffle to the Pelvic Messenger, which is a non-profit dedicated to educating the world on CPP.

Another highlight was the break-out sessions, which provided more one-on-one attention in practicing the techniques discussed in the lectures. Specifically, participants enjoyed the physical therapy workshops with the help of Dustienne Miller, who is a wonderful yoga teacher dedicated to the care of those coping with pelvic pain.

Finally, a highlight that was more “behind the scenes†was the opportunity to meet with one-on-one practitioners who specialized in a variety of areas, including nutrition, Emotional Freedom Techniques, One Brain, Sound Therapy, Qi Gong, Yoga, and Myofascial massage. We are so grateful for the providers who took their weekend to be available for individual sessions for the participants.

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  1. What was some of the feedback you received from participants?

We have received very positive feedback overall, including the highlights listed above. Some constructive criticism we received revolved around the food available during the meals. While we tried our best to make the meals “IC friendlyâ€, there were other additions and subtractions that we missed. However, all of those details are written in bold for the next retreat! Overall, feedback mainly revolved around the buzz of meeting others with shared experiences, knowing they are not alone and that there are answers to their symptoms, leaving with concrete techniques, resources, tools and treatment leads, and enjoying the dedication and passion of the Alliance presenters. According to all of the evaluations, we achieved all of our goals that we set out to accomplish! These goals included the following:

  • Participants will develop and practice self-healing techniques.

  • Participants will create a consolidation of self-care skills acquired during the therapies.

  • Participants will illustrate to themselves and others that progress can be made in managing their pain.

  • Participants will assess the cognitive, emotional, social, spiritual, and physical consequences of their chronic pelvic pain and how these influences are affected by the pain.

  • Participants will develop understanding of how CPP affects their sexuality.

  • Participants will develop an understanding of how CPP affects their relationships with friends, family, and themselves and will learn how to better navigate these relationships.

  • Participants will develop an understanding of multiple treatment approaches that they can explore within their own community.

  • Participants will learn how to reframe their sexuality as it relates to CPP.

  • Participants will have an opportunity to connect with others who share their experiences and feelings related to CPP.

  1. How did the Yoga sessions complement the lectures and workshops?

The yoga sessions helped guide participants through relaxation and stretching techniques to help release their pelvic floor muscles and surrounding muscles involved with CPP. It was fun to be able to first educate the participants on the muscles and ligaments that are involved, and then follow that with actual techniques on how to address these muscles through specific stretches and movements. Dustienne is also wonderful at talking them through relaxation breathing techniques, which complimented the mindfulness-based stress reduction lecture and workshop.

  1. Would you do this again? What do you look forward to incorporating into future Alliance retreats?

I absolutely plan on doing this again. I look forward to planning more break-out workshops and expanding the retreat to 3-4 days, rather than trying to squeeze it all in to 2 days. This will also for more one-on-one attention as well as more “free time†for participants to spend quality time together without being exhausted from a busy day. I will have more one-on-one treatment providers available on-site to not only offer sessions but also answer questions about the modality and how it helps with CPP. I also plan on having a “pre-retreat†training day for health care professionals that also offers continuing education credits (CEUs), which always helps practitioners attend! I would also like to incorporate more patient testimonials to help emphasize the importance of an integrative, multidisciplinary approach with all chronic pain disorders. It’s so hard for many to afford the multidisciplinary services because most are not covered by insurance. However, it is so important to the management and treatment of chronic pain and this must be understood and emphasized more by mainstream health care providers.

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