Pelvic Pain Self-Advocacy
Living with chronic pelvic pain can feel isolating, frustrating, and overwhelming. For those of us who have been through it, the journey to better care often requires persistence, education and self-advocacy. Recently, I had the opportunity to share my personal experiences and insights with Pelvic Health Professionals during a live event. Here’s a look into my story and the key takeaways from our discussion to help you navigate your own pelvic health journey.
The Power of Community and Self-Advocacy
My journey with pelvic pain started in childhood, leading me to create The Happy Pelvis, a platform to empower others living with similar conditions. Like many of you, I’ve faced delays in diagnosis, feelings of dismissal + the overwhelming task of navigating a complicated healthcare system. However, finding a supportive community transformed my path.
In connecting with others, I discovered resources, specialists and helpful/actionable strategies. This sense of community not only helped me access better care but also reminded me that I wasn’t alone.
However... self advocacy shouldn’t be the patient’s burden
As someone who has lived with chronic pelvic pain for most of my life, I’ve learned firsthand the importance of self-advocacy in the healthcare system. While I value the empowerment that comes from being an informed patient, I also carry a deep frustration: self-advocacy shouldn’t have to be such a necessity.
The medical system exists to give patients accurate information, informed consent and expert care and guidance. It’s designed to be a space where we can trust the care we’re receiving. Yet, for so many of us living with complex pelvic conditions, the reality couldn’t be further from this.
In my case, symptoms were minimized, misdiagnosed, or outright ignored. It wasn’t until I took it upon myself to educate and advocate that I started to make real progress. But it shouldn’t have been this way.
Why should the system rely on us to navigate its complexities? Why should the responsibility for ensuring informed consent or finding the right specialist fall on the patient?
While self-advocacy has been a necessary part of my journey, I hope for a future where it isn’t such a burden. The medical system needs to rise to meet patients where they are, offering the care and information we deserve.
Until then, here are some tips to help you advocate for yourself:
Key tips for pelvic pain self-advocacy
Keep a Symptom Journal
Tracking your symptoms regularly can reveal patterns and provide clarity. I created my own symptom tracker after years of frustration with scattered test results and disconnected care. This tool became invaluable during medical appointments, helping me articulate my experiences and advocate for specific treatments.
Organize Your Medical Records
A medical binder is a game-changer. Having my test results, imaging reports, and other records readily available made it easier to communicate with healthcare providers. It also encouraged them to take my concerns more seriously.
Educate Yourself and Know Your Rights
Understanding your condition and treatment options is empowering. Follow reputable medical professionals on social media or read accessible resources to stay informed. Don’t be afraid to ask for a second opinion or clarify the details of your care.
Bring a Support Person
Having someone accompany you to appointments—especially if you experience anxiety or past trauma—can make a significant difference. In my experience, the presence of a male support person sometimes led to better engagement from healthcare providers.
Set Goals for Each Appointment
Go into every appointment with clear goals. Write them down and check them off as you go. Even if the doctor is in a rush, having a list ensures you leave with the answers you need.
Challenges in the healthcare system
One of the biggest hurdles I’ve faced is the lack of specialized care and collaboration in pelvic health. While there’s been progress in recent years, there’s still a long way to go. Delays in diagnosis and overlapping conditions often leave patients in limbo. However, I’m encouraged to see more research and awareness about pelvic pain conditions like endometriosis, interstitial cystitis, and vulvodynia.
The role of practitioners
During our discussion, I emphasized the importance of trauma-informed care and active listening. When practitioners validate a patient’s experience, it fosters trust and leads to better outcomes. I also encourage healthcare providers to collaborate with pelvic health physical therapists, as they play a crucial role in managing chronic pelvic pain.
Advocacy beyond the doctor’s office
Advocacy doesn’t stop at medical appointments. Engaging with charitable organizations, advocacy groups, or even social media platforms can amplify your voice and raise awareness. At the same time, remember to prioritize self-care. Advocacy can be emotionally and mentally draining, so it’s essential to take care of your well-being.
Changes are happening
It’s inspiring to see progress in pelvic health research and care. In the endometriosis community, for example, there’s been a shift toward more advanced excision techniques and non-surgical diagnostic methods. These advancements give me hope for a future where patients receive faster and more accurate diagnoses.
Chronic Pelvic Pain needs to be taken more seriously by doctors.
The longer it takes to get to a correct diagnosis, the longer it takes to believe someone’s pain, the longer it will take them to recover and have a good quality of life.
When pelvic pain becomes chronic, our immune, endocrine and sympathetic nervous systems all get switched on to help us cope. The entire body joins in on the party. This reaction may help with recovery in short term pain, but when chronic pain is added to the equation, these systems don’t function well and neither do we. Our energy levels, sleep, bowels, concentration, immune system, are all impacted and life becomes even more challenging.
The best thing a doctor can do for someone with repetitive pelvic pain symptoms at early onset, would be to direct them to the correct specialist and treatment plan to decrease the chance of them developing chronic pelvic pain and the additional unpleasant symptoms that go a long with it.
Living with chronic pelvic pain is challenging, but you don’t have to go through it alone. Connect with others who understand your journey, equip yourself with tools like symptom trackers and organized medical records, and advocate for the care you deserve. Remember, your voice matters, and with persistence, change is possible.
If you’re looking for support, resources, or community, feel free to explore The Happy Pelvis.
If you are a pelvic health profession, please check out Pelvic Health Professionals, where pelvic health professionals connect and learn together.
Together, we can navigate this journey and make a difference where we can.
