Pelvic pain affects 1 in 7 individuals born with a uterus at some point in their lives. Because there are so many organs, muscles, ligaments, and fascia all in one place, diagnosing and treating pelvic pain can be extremely complex and interdisciplinary. This often leads to misdiagnosis, incomplete treatment and unnecessary suffering. 

In my own battle with pelvic pain, I made many mistakes along the way. When my symptoms first started very suddenly, I consulted a doctor that I’d worked with before and trusted. I expected to get a clear diagnosis, treatment plan, and immediately start making strides to feel better. Unfortunately, my diagnostic workup showed nothing notable, and I was given the advice that perhaps emotional stress was causing my symptoms. I was given the prescription to meditate, add some supplements into my regimen, and maybe try an antidepressant. 

This is a common experience for many pelvic pain patients. Many well-meaning practitioners simply do not have the expertise or tools to effectively and methodically unravel a patient’s spider-web of pain generators. As patients, we are taught to trust our doctors because of their extensive training, so it takes a bit of unlearning to second-guess medical advice. 

Over the next three years, I saw over 30 different medical practitioners, endured countless tests and underwent invasive treatments. Eventually I found the right types of medical professionals who could properly diagnose me. I had a whole buffet of conditions – endometriosis, interstitial cystitis, polycystic ovaries, abdominal adhesions, hypermobility disorder, hip impingement & bone spurs on my hips, labral tear, and athletic pubalgia (core muscle tears). 

Unpacking this mess was like unpeeling an onion. The first helpful treatment (excision surgery for endometriosis) took care of some of my problems, but caused many new ones. However, it provided clues that led me to new diagnostics and new experts. Very slowly, over the course of several years, I did enough trial-and-error and gathered enough clues to finally create a clear picture of my pain generators, through which I achieved full recovery. 

The biggest lesson I took away from this journey was how proactive I had to be as a patient. No one was going to “fix” me. There wasn’t one single doctor who was going to “figure me out.” This is so incredibly hard to accept when you are suffering and just want to feel better, especially when all of the evidence suggests that you’ll feel this way forever. It took a village and many different perspectives from various disciplines to eventually unpack all of my pain generators. I had to orchestrate the entire thing myself (along with my support system).

Here are 5 essential tools I cultivated along my journey that can help you get through it too:

1. Believe that you CAN be well again

This is your guiding light. Suffering from chronic pain or illness is like being in a dark jungle with no map. The belief that you can find civilization again when you have no direction and no light is the only thing that will propel you to put one foot in front of the other in the darkness. Sometimes you’ll trip over a branch or fall in a puddle. Sometimes you’ll take a wrong turn. But you’ll use this feedback to eventually navigate the jungle and find a path forward. When you hold the firm conviction that wellness is out there for you to find, you’ll have a flashlight even in the dimmest moments. 

2. Create a symptom tracker and/or pain chart and bring it to every appointment

Create your own pain chart, documenting symptoms, triggers, and patterns. This personalized record can help you and your healthcare team identify potential pain generators and tailor treatments accordingly. You may not have taken even a single anatomy class (I hadn’t!), but learning a bit about the anatomy of the pelvic region can empower you to communicate effectively with healthcare professionals and make informed decisions about your treatment options.

3. Use each practitioner as a resource

While practitioners possess valuable knowledge, you are the ultimate expert on your  body and your lived experience. Recognize that each practitioner brings unique expertise to the table, but they are also limited by the lens through which they use to evaluate the problem. As an example, after I suspected that my hips were part of the problem, my first orthopedic specialist said that she didn’t see anything on my MRI and suggested that I had no issue with my hips. When I got a second opinion from a different specialist who had different training, he found the host of problems I mentioned above and fixed all of them in an extensive surgery. You always have the right to respectfully get a second, third, or fourth opinion. You also always have the right to consider other ways of thinking about the problem from a different point-of-view. 

4. Explore Various Diagnostic Lenses

Since pelvic pain can stem from countless underlying causes, staying open-minded about potential diagnoses and treatment approaches is crucial. Be willing to explore new perspectives and consult with various specialists who may offer valuable insights. For example, I saw four different pelvic physical therapists before I had a massage therapist suggest that my psoas muscle tightness might be indicative of an underlying hip injury and that I should go see an orthopedic specialist for imaging. Even though bodyworkers, massage therapists, nutritionists, and the like cannot offer diagnoses, they can offer insights about your body that may set you on a path for appropriate treatment.

5. Focus on what you CAN do vs. what you can’t do

When you’re in pain, it’s easy to feel like you can’t do anything. At my worst, I just wanted to lie on the couch all the time curled up in a ball because any movement hurt. As I slowly peeled back the layers of the onion, I was able to do a little bit more. Of course I was sad that I couldn’t do many of the activities that I once loved like running, climbing, or backpacking. But I could take my dogs on short walks to the park. I could do very simple stretching sessions. I found that swimming hurt the least and the weightlessness I experienced in the water felt really nice on my painful joints, so I started doing that more frequently. Shifting your perspective to what you can do opens up a world of possibilities. It won’t solve your pain, but it can bring a sense of empowerment and joy back into your life while you continue to look for answers.

Recovering from pelvic pain is not easy. It is an intricate process that demands active participation and self-advocacy. However, it can offer so many lessons in resilience, self-love, and empowerment. Most importantly, it is possible to heal!

If you’re interested in learning more about my approach to healing, be in touch through Instagram or email me here.

Dana Rosen is an integrative women’s health coach helping women overcome endometriosis, fix hormone imbalances, and navigate chronic pelvic pain so they can live full and healthy lives. She educates and empowers women to make meaningful lifestyle changes while finding purpose and resilience as they heal.