A few weeks ago, I connected with Noa Fleischaker, the founder of Tight Lipped. This organization started as a podcast in 2019, and has grown to reach over 3000 people from 58 countries around the world. Tight Lipped is all about supporting people who have been struggling with vulvovaginal pain conditions– problems like vulvodynia, vestibulodynia, pelvic pain, painful sex, and more. They share stories to build community, normalize often very private problems, and advocate for better care. They recently published their first Zine, “Opening Up,” and it is a beautiful compilation of art and stories from people who have dealt with vulvovaginal pain conditions. I received my copy last week, and it is in our waiting room as I type this!
I hope you enjoy this interview and connect with Noa’s message! If you would like to support the work of Tight Lipped, please visit their website! They also have events, meet-ups (with one coming up this week!!), workshops, and book clubs! So check it out and connect with this amazing group!
Agency is defined as, “the capacity of individuals to act independently and to make their own free choices.” What does this mean for healthcare? How does the healthcare consumer maintain and create agency while also navigating the complexities of medicine?
A few weeks ago, I traveled to Washington DC to teach a group of 40+ physical therapists and occupational therapists about working with people who are dealing with various types of pelvic pain. Over this 3-day course, we covered topics related to diagnosis, medical management, manual therapies, movement interventions, and much more. On the third day of the course, I gave a lecture on “trauma-informed care.” What is trauma-informed care? Trauma-informed care means the “adoption of principles and practices that promote a culture of safety, empowerment and healing.” While we do focus on how widespread trauma is, the varying ways people experience trauma, and strategies to develop sensitivity, respect and consideration for the needs of our patients, we also strongly emphasize the importance of treating all patients in this way. One of the key pieces in doing this is helping a person develop a strong sense of agency– the ability to make their own educated decisions and partner alongside their healthcare professionals, instead of being the recipient of directed care.
The idea of agency can seem fairly basic. Shouldn’t every patient feel like they can make their own decisions? Shouldn’t they feel like their healthcare providers are all members of the same team? But, that is often not the case. When a person loses this agency, they can end up in situations where things start happening to them, instead of with them, and this can create difficult and sometimes traumatic experiences. This could be a mother who feels pressured to have a birth intervention she was really not comfortable with having. This could be a person being scolded for not being “compliant” with their recommended home exercise program (as opposed to their clinician understanding what happened and partnering with them to fit exercise in their lives). Or, it could be feeling pressured to continue a painful examination that they otherwise would choose to stop.
There are many reasons why losing one’s agency is detrimental. Remember, the pelvic floor muscles respond to threat. So when a person is in a situation where they feel threat (whether that is due to stress, a difficult situation, or other circumstance), the pelvic floor will activate. When someone is dealing with something like pelvic pain, sexual pain, and other diagnoses, this can lead to a problem becoming worse. So, how can you maintain your agency as a patient?
Ask Questions. All the Questions. “The only stupid questions are the ones that are not asked.” If you aren’t understanding what is being recommended to you, ask more questions for clarification. Your healthcare provider should always be happy to answer any questions you may have to help you make the best decisions for your care. This also applies to times when you are in the middle of a treatment/procedure/etc. Ask away. Try saying:
“Would you mind explaining my options again?”
“Can you clarify what the benefits and risks would be to…”
“Are there any risks in not moving forward with that treatment?”
“What are the reasons you think I need to…”
“I’m sure you have a busy day, but it would really help me if you could answer a few questions.”
Don’t be afraid to slow things down. If your treatment session or medical appointment is going a direction you are uncomfortable with, or if something is happening that you don’t feel like you understand, feel free to take a break. Try saying:
“I need some time to think about that.”
“I would like to take a few minutes to consider my options.”
“I would prefer not to move forward with that today.”
“Can you explain _______ to me again?”
“I’m not sure I understand all of my options.”
“I’d like to go home and think about all of this. I’ll let you know what I think at our next visit.”
Bring a friend. If you know that you tend to get overwhelmed at your appointments and have difficulty expressing your needs or how you feel, consider bringing a friend/partner/spouse who will have your back! Tell them in advance what you want their role to be and how they can help you! This could be stepping in to ask for some time to consider options, asking a provider to slow down and repeat their explanation, or simply being a person to be present with you during a difficult appointment.
I hope these tips have been helpful in helping you develop strategies to create agency as a patient. If you are a healthcare provider, I urge you to reflect on your own practices. Do your words and actions support your patients in maintaining autonomy? support agency? Do you unintentionally pressure patients into participating in treatments or exams that they may not feel comfortable with? Do you shame patients when they don’t follow your recommendations? None of us are perfect. I truly believe that most health care providers have the best of intentions. But, we can all do better. Reflect on our own words, habits, body language, and be better partners for our patients!
What other strategies have you found to help you improve your agency as a patient?
This past weekend, I was fortunate to work with an incredible group of practitioners at a Level 1 Pelvic Floor Course in my home city of Atlanta. I always leave these weekends renewed, excited, and yes, somewhat exhausted ;-). Not only do I get to teach with some pretty incredible colleagues (in this case, Sara Reardon– the VAGINA WHISPERER!!, and Darla Cathcart–who literally is the reason why I practice pelvic health!), but I also get the opportunity to see the transformation of clinicians who start the weekend a little nervous about the possibility of seeing a vulva, and end the weekend confident and empowered to start helping people who are experiencing pelvic floor problems. (Ok, some may not be 100% confident–but definitely on the road to confidence! ;-))
One of my favorite research studies of all time (yes, I am that nerdy) is always shared at this course with participants. This study by van der Velde and Everaerd examined the response of the pelvic floor muscles to perceived threat, comparing women who have vaginismus (painful vaginal penetration) compared to women who don’t.
Throughout my clinical career, the concept of stress and threat worsening pelvic floor problems has been a consistent thread. I frequently hear:
“My job has been so incredibly stressful this week. I am in so much pain today.”
“Everything started this past year…during that time, my parents had been very sick and it was a very emotionally and sometimes physical stressful time for me”
“I’ve been having a severe flare-up of my pain. Do you think the stress that I’ve been dealing with in going through a divorce/break-up/job change/move/new baby/new house/etc. etc. etc. could be related to this?”
Honestly, I could go on and on with continued statements like this. Stress is a complicated topic, and there are many factors involved that can contribute to an alteration or increase in symptoms when a person is in a persistent stressful situation. So, back to my favorite study. In this study, the researchers had the participants watch four different film excerpts that were considered to be: neutral, threatening, sexually threatening or erotic. They then recorded the response of the pelvic floor muscles using EMG. The results of this study were fascinating. They found that with both the threatening stimulus(which happened to be an excerpt from the movie Jaws) and the sexually threatening stimulus (which was an excerpt from a TV movie called Without her Consent–which frankly, sounds awful to me!) the pelvic floor muscles demonstrated increased muscle activity. And this was true in both the groups of women who had vaginismus and the groups of women who did not. (side note: they also saw that the upper traps had this same activation pattern! Makes sense, right?)
Fascinating right? So, what does this mean? I always tell patients that the pelvic floor can be like a threat-o-meter. When a person is experiencing a threat–this can be a physical or emotional threat– the pelvic floor will respond. You can imagine then what happens when that stressful situation or threat stays around for a long period of time! This knowledge alone can sometimes be so empowering for people in better understanding why their bodies might be responding the way that they are.
So what can we do about it?
If you are dealing with pelvic floor muscle overactivity problems or pain, and you find yourself in a stressful or threatening period of time in life, try these ideas:
Be mindful of what is happening in your body: I encourage people to do regular “check-ins” or body scans throughout the day to feel how their pelvic floor muscles and other muscles might be activating. If you feel any muscles gripping, try to see if you can consciously soften and let go of tension you might feel. After doing this, try to take a slow long breath in and out thinking of letting tension release.
Drop it like it’s hot: Your pelvic floor, that is. Several times throughout the day, consciously think about letting your pelvic floor drop and lengthen. If you have a hard time feeling what your muscles are doing, you can try performing a small (think 10-25%) activation first and then think about letting go of any muscle activity.
Don’t be an island: Know that there are so many resources to help you if you need them! Working with a skilled psychologist or counselor can be incredibly beneficial to many people! And, if your pelvic floor is giving you some problems, always remember that you can go see a pelvic PT– yes, even if you had worked with one in the past! We are always here to help you get through life’s hurdles! Sometimes people end up needing little “refresher courses” along the way to help when the body needs it.
So, what are your favorite ways to manage stress? Fellow PTs- how do you help patients handle flare-ups that happen when life starts to get stressful?
I love to hear from you, and meet you! Always feel free to reach out to me here! If you would like to take a course with me, check out the schedule listed on my For Professionals page! I hope to meet you in person soon!