Testimonial: Alliance for Pelvic Pain, by Alexandra H.

Thank you so much to Alexandra H. for submitting her testimonial of her experience from the Alliance for Pelvic Pain retreat. We are so genuinely touched by her words, and we hope you will be, too! If you have any questions about future Alliance for Pelvic retreats (and there will be more!), please feel free to reach out to us via healingpainfulsex@gmail.com , or on our Facebook or Twitter pages.

Fighters and Healers: One Patient’s thoughts on the Alliance for Pelvic Pain Conference

by Alexandra H.

My first impression when I attended the gathering the night before the Alliance for Pelvic Pain conference is that all of the women (and their partners) looked so normal. They were beautifully dressed as they sipped wine and got to know each other and the healers who led the conference. And yet each of these women, like me, was in either intermittent or constant pain, probably had trouble sitting for long periods, had most likely been humiliated by uncaring or ignorant doctors, and yet had made the journey to Bethlehem, Pennsylvania, in search of education, healing, and camaraderie.

As I got to know these women, my admiration grew. Many women with pelvic pain problems have kept them secret. Other women had lost jobs, marriages, relationships with their relatives. Some had suffered pain and depression so deep that they would stay in bed for days. And yet every single one of them cared enough about her own life to get out of bed and travel—from as far away as the UK—to this gathering.

And then, of course, bright and early on Saturday morning, (7:00, ouch!) the day started with yoga, and by 8:30, the conference began. We were urged to take green markers out of our generously stocked gift-bags and write “It’s All Connected” at the top of our notes. And indeed, it was.

Each presentation was excellent, and complemented the other. Sometimes similar information was repeated, but it was not repetitive, both because the information was presented at a relatively high, but understandable level, and because each speaker had a slightly different take on how to understand the pelvis and what different kinds of layers affect it. As Dr. Robert Echenberg said, “These are complex overlapping problems with a need for complex overlapping treatments.” He detailed a number of these conditions that, including interstitial cystitis, chronic pudendal nerve neuralgia, pelvic pain, IBS, endometriosis, PGAD, etc. and gave explanations of each of them. He also helped us to understand the differences between chronic and acute pain and the difficulties faced in treating both the visceral and somatic triggers of neuropathic and inflammatory chronic pain, because, as he said, with chronic pain, “pain is the disease.” It was clearly frustrating to him that so little attention has been paid to an issue that he said affected approximately 20 percent of all women As he intoned, “There really is an entire woman around the uterus of the patient. It was helpful to learn that he, obviously a doctor of long experience, said that he only started discovering the issue of pelvic pain about twelve years ago.

Next, Dr. Deborah Coady started in with a very healing statement, “It’s all good news—I think we’re making a shift.” She explained her technique for obtaining a complete diagnosis for women with chronic pelvic pain issues, which involved looking at the body layer by layer, from the surface (skin, vestibule, labia), to the nerves, to the muscle and connective tissues, to the orthopedic layer, organs, and bodywide systems. She explained (something new to me) that some nerves connect and communicate in the spine, creating shared pain messages that go to the brain.

Physical therapist Amy Stein further explained the connections of the muscular-skeletal systems on pelvic pain, including IBS and urinary problems. She, too, emphasized looking at the whole body and the importance of such things as hip alignment and flexibility, and the idea that physical therapy can help to re-educate your body into more helpful patterns of movement.

Next, Licensed Professional Counselor Alexandra Milspaw spoke of the pain processing signals in the body. She explained the mind-body connection. For instance, she said that how traumatic events are initially perceived (such as the difference between breaking your arm while playing basketball vs. being beaten) can affect the way the pain is perceived in the long term. She explained about different nerve functions and bout how mindfulness can help to combat the fight-flight-freeze response that adds to the muscle tightness that many of us experience. One thing I learned that I found particularly helpful was the difference between dissociation and mindfulness. I was confused because both involve a separation between the ego self and the watching self—but in mindfulness, instead of your mind carrying you away from where you are because it is too painful, you are instead directing your attention toward inhabiting your body and the present moment more deeply and fully.

Next, therapist Nancy Fish spoke. In her gentle and tough way, she validated just how hard it is to live with chronic pain—and even suggested that it is normal for sufferers to consider suicide as an escape (although if they are serious about it, they need help quickly). She detailed how very sad chronic pain makes people, and decreases their ability to work and socialize, and make them feel like “damaged goods.” She emphasized that we are NOT crazy. And she said that we deserved respectful and dignified treatment, particularly from the medical community. She gave practical coping suggestions such as getting outside of ourselves; taking one day at a time; not projecting too far into the future; educating ourselves; bringing information to the doctor; asking doctors for long term treatment plans and goals, and treating ourselves when we feel at our worst—guilt free! (excellent advice!)

In the afternoon, we had wonderful workshops. Amy Stein helped to give us different exercises that we can use to open up and strengthen our bodies. She was very comfortable with speaking about bowel and bladder functions, which was somehow very consoling. I liked the exercises, too and it felt great to move after a morning of sitting.

Later, Alexandra Milspaw spoke again, and helped me to increase my knowledge of neuroscience greatly (I had never heard of the neuromatrix). I also learned something ELSE about mindfulness meditation that I didn’t fully understand. And that is the step of accepting but then REDIRECTING the feelings to something that is also present but not being attended to; i.e.; moving attention from a part of the body that hurts to one that doesn’t  She gave helpful suggestions such as how to eat mindfully and how to walk mindfully. In fact, I was so taken with her suggestions that afterwards, I just walked outside and savored the beauty of the historical area of Bethlehem on a gorgeous spring day, looking at flowers and ancient gravestones and Moravian stars and the feeling of breath and movement and life in my body. I walked about seven miles and realized I had missed Dustienne Miller’s yoga class. That was disappointing, because I knew of her excellent reputation and she seemed so sweet, but it was a magical walk and Alexandra’s ideas really inspired me.

On Sunday, there was qi gong and yoga, which I sadly missed, and more talks. Dr. Echenberg explained interstitial cystitis, IBS, and later, PGAD in greater detail. He showed excellent charts of the connections between different ailments and also a chart about the pain/feedback loop that I found particularly helpful. Dr. Coady told us that there were things that we could do to heal ourselves without doctors (or at least between doctor visits). These included getting off our butts and exercising, “Our bodies were made to move;” nutrition (she pointed out foods such as alcohol which were neurotoxins and the importance of getting vitamins in fresh, whole foods—except for Vitamins D and B12); the role of medicines; both in terms of their side effects and the benefits that some can provide in “downregulating” the nervous system. Overall, her focus (medically speaking), included, 1. focusing on each pain generator individually; 2. But thinking big, and outside the box; 3. Creating treatment plans for flare-ups  (before they start); and 4. Being willing to reevaluate residual or persistent pain to see if it is occurring in a different layer. She also emphasized, as did the other practitioners, that—in concert with the conference’s theme of “It’s All Connected,” --attacking chronic pain is a multimodal process that requires a team of practitioners, including therapists, physical therapists, different kinds of doctors, etc., to treat.

Next, Amy Stein spoke and further explained the more orthopedic aspects of pelvic pain, such as how, the deep muscles of the pelvis all connect to the tailbone, and how pelvic floor physical therapy corrects the neurogenic triggers of pelvic pain. One thing she taught was that people shouldn’t be going to the bathroom all the time “just in case.” And that they should be able to sit through the movie Titanic. I have to disagree with that, however. Lawrence of Arabia, maybe. But Titanic is the wettest movie ever! Still, I liked her analogy.

Alexandra Milspaw then spoke and asked, “How do you take care of yourself daily, weekly, monthly?” She urged us to take care of our spiritual side, our creative side, our social side, to use guided imagery and “bodywhispering,” to break routines (like brushing your teeth with a different hand than you usually use), by touch, yoga, diet, and by loving ourselves.

Nancy Fish spoke frankly and gently of how we needed to take care of ourselves and to be unapologetic for who we are as people with chronic pain. “If you have anxiety, it’s not ‘catastrophizing,’” she said. “And there are no ‘baby steps.’ Each step forward is monumental.” She urged us to delve deep into our inner resources to live the best possible emotional, sexual and spiritual life.

In the afternoon, we had more workshops. Nancy’s was on grieving. As I listened to other women speak, telling stories of loss and courage, I felt so deeply sad that I could only lie there on the floor with my eyes closed, half wanting to run out of the room, and half knowing I needed to be there and hear what they had to say. Alexandra gave a workshop about how to feel intimate with your partner without being actively sexual. We did exercises where we held arms with a fellow patient/fighter and closed our eyes, trying to get our breath in sync with each other. It was fun, and I did feel attuned to my partner when I tried it. I was especially touched because one woman had brought her husband—and I knew it was her second husband because her first had deserted her when she got sick (we had been sharing stories at lunchtime). He had been looking into her face the whole time and said, tenderly, “I was just looking at her and seeing how beautiful her face was, how smooth it is, and has no wrinkles.” She had been through many things, but she certainly had love on her side. Amy Stein did exercises with a massage stick and rubber balls. Afterwards, I immediately walked out of the room and bought her book AND an exercise stick and ball. That was really fun.

At the end, we had one final session, and got to ask questions. And then, it was over. I was elated and excited all the way home. I felt honored to be among these women who got up every day in pain and still made lives for themselves. I was also honored to be among these hard-working, curious, intelligent, forward thinking, compassionate healers. I have so many takeaways (or pearls, as Dr. Echenberg would say) that I am still writing them down in my journal. I am using different aspects of what each person said. I am considering what I put in my mouth and whether it will help me or not, I am doing exercises from Amy Stein’s book AND I bought a big Human Anatomy coloring book to help myself understand more about the interrelationship of different systems of the human body. I am reading more about the psychological effects of chronic pain and feeling a greater sense of advocacy on all of our behalfs. I really appreciate how accessible and sensitive each of the healers was, and how willing they were to talk to participants in the interstitial spaces of the meetings. I watched Dr. Coady’s face as she listened to a woman explaining her problem, saw her total concentration, her brow furrowed, as if the rest of the room had disappeared, and felt touched. I loved how Dr. Echenberg seemed so indignant at how few of his colleagues cared about his subject. And also that he had his male students get up in the stirrups so they knew how we ladies feel! It was very helpful to understand that we were were learning information that many medical students are not getting today, both in terms of chronic pain and in terms of thinking deeply about the structural issues of the pelvis. I was actually surprised at what medical students DON’T learn. It helped me to understand why some of my own practitioners have been so helpless at times.

I can’t remember who said it, but one of the healers said that the pelvis is really the core of the body, more than the abdomen. This helped me to tie together strands of psychological and physical ways of thinking about my body and myself. I realized that having chronic pain has been a very powerful journey that is unfortunate and harmful in many ways, but in other ways, has made me feel that to reach full humanity, a person must integrate the pelvis, as well as every other part of her physical being, into her mind with love and acceptance. I left the conference feeling much more of that sense of integration, and with a sense of connectedness to everyone else there. I have much more I could say about this, but I just wanted to say how deeply meaningful the whole experience was for me and how grateful I am for you to have provided it.

--Alexandra H.

P.S.: If there is one change I would suggest for next time it would be to get someone good to videotape the conference on YouTube. I have seen many excellent medical lectures on YouTube (such as the Stanford Mini Medical School series) and this would have been a fantastic opportunity to get the word out).

1 comment | Add a New Comment
1. Laraine | May 16, 2013 at 11:35 AM EDT

Thank you, Alexandra H. for a wonderful summary of the weekend. I wish I could have been there and I agree with you that it would be wonderful to be able to see a videotape of the conference so that this information could reach a wider audience. There are a lot of us out here in pelvic pain. Hope I will be able to make the next conference.


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