Navigating Endometriosis (By a licensed therapist)
This is a topic that’s near and dear to my heart. Endometriosis is a diagnosis that is chronic and has no known cure. This is a full-body condition and affects 1 in 10 individuals with uteruses around the world. There are some tools for pain/symptom management, but they are limited and not always effective. As someone who has gone through the journey to diagnosis and treatment, I wanted to share a little bit about the experience of living with endo. Every individual’s experience and path with endo is unique, but there are some commonalities.
One common experience with endo is the difficulties that come with pursuing a diagnosis. To get a diagnosis, laparoscopic surgery by a specialty surgeon is required. To qualify for surgery, certain criteria usually have to be met, and a referral to a surgeon is often required. And before that, symptoms have to be addressed with a doctor (like an OBGYN).
Unfortunately, the idea that periods are painful is pretty common, so you’re most likely not going to have a doctor be the one to suggest an endometriosis diagnosis. This concept is so ingrained in us, that women (and people with uteruses) are just expected to be in pain. In reality, this is not normal and should not just be expected. It wasn’t something that I personally thought twice about, until I heard Dr. Thais Aliabadi speaking about it on a podcast episode. She emphasizes that period pain is not normal and is actually often an indicator of an underlying problem like PCOS or endometriosis.
Unfortunately, many doctors invalidate this concept and normalize a woman’s pain. On this note, I’d encourage you to reflect more deeply and consider how much impact pain causes you. When I personally reflected on this, I recognized that my pain significantly limited my life. I made an effort to ask my doctor about my symptoms and started my path to diagnosis. If you’ve been questioning your pain, you might need to be the one to start this conversation with your doctor and advocate for your own needs. For anyone who has already gone through the diagnosis process, I’m sure you have had to advocate for yourself at some point (or maybe several points) throughout the process.
There are so many potential obstacles to diagnosis (doctors, insurance, cost, inaccessibility to care) and even once a diagnosis is reached, there’s only minimal relief. There are little to no pain interventions that are known or widely accepted, outside of pharmaceuticals options. This can be frustrating to deal with, and even more isolating to come to terms with. I have rarely seen anyone share openly about their endo experiences or talk about the reality of living with it.
I believe that the more we talk about it, the more awareness we raise. I hope that by sharing about my experiences, I can encourage others to start advocating for their own needs and get some more answers about their pain. We can come together to push for more research and better treatment options. Women’s pain is not normal, not okay, and not something I’m willing to accept.
I hope to create an atmosphere of solidarity, mutual support, and shared experiences.
That’s why I’m offering a monthly endometriosis support group for anyone in Maryland who’s been diagnosed with or suspects they may have endometriosis. You can learn more about it and sign up here.
If you’re a resident of Maryland and want to get started with a therapist, I specialize in working with clients who have chronic illnesses such as endometriosis. You can fill out my contact form here to get started today.
Elizabeth Allen, LCPAT, LGPC, ATR-BC
Creative Pathways Counseling LLC
