Finding your team means finding your voice
Unfortunately, there continues to be mis-information about endometriosis and treatment even among the medical community.
Even those claiming to be “experts” still spread potentially harmful misinformation. How are you supposed to know? You can do everything “right” and still choose an uninformed provider. How does this even happen???
According to a 2023 study published in Obstetrics & Gynecology, diagnosis of endometriosis can be delayed up to 11 years from the onset of symptoms. Titled, “Barriers to a Timely Diagnosis of Endometriosis,” the study points out that, “during this time, women may experience persistent symptoms that affect their quality of life, productivity, and relationships, and the disease may progress.” While all of this is true, going years without a diagnosis does something else: it makes you feel crazy.
You’re not crazy, and more importantly, you are not alone
The article goes on to identify four key themes contributing to long delays in diagnosis. In short, these four themes are
- Difficulty establishing symptoms from normal menstruation
- Stigma and normalization of menstrual pain
- “attitudes and lack of training for health care professionals, delayed referrals to specialist services, and poor explanation of oral contraceptive pill use in the diagnostic process”
- variability of symptoms and overlap with other conditions
There’s a lot to unpack there. Anybody managing endo probably has multiple examples to demonstrate each of these four themes. If you haven’t experienced this disease personally, documentaries like “Just Your (.)” or EndoWhat can help you relate to the patient experience, scan a quick but dispiriting scroll through Reddit posts on the topic. We, as a community, are becoming better informed on these issues, the impact, and treatment options, but we still have a long way to go. We’re getting there, and the progress is patient-driven!
Confusion and misinformation are unfortunately a universal experience for people living with endo.
What do we do about endo?
If there’s a silver lining to endo (and I’m really not sure there is, but I’m going to reach anyway…) it’s that you learn how to advocate for yourself. You have to. But there is a community of people on the front lines who are right there with you. If you suspect you have endometriosis or you have been recently diagnosed, here’s some strategies we hope will help you.
- Be aware of common myths about endometriosis and stay clear of resources that perpetuate bad or outdated information. Not sure what bad or outdated information looks like? Check out our blog post “Endometriosis Myths.”
- Assemble your team. As the article cited above points out, not every healthcare provider has the necessary attitude or training. But there are people who have dedicated their careers to fighting this with you. They are current on endometriosis research (if not doing it themselves). In addition to a qualified pelvic floor PT, an endometriosis excision specialist is a great person to have on your team. These are the folks most likely to expedite your diagnosis, take you seriously, and explain your treatment options. Be discerning.
- You know your experience better than anyone else. Don’t let anybody make you feel crazy.
In conclusion…
Endometriosis is a very real, whole-body condition that affects each person differently. If you, or a loved one are still struggling, don’t give up hope. Let us help.
There IS help available. Evidence-based treatments based on the whole-body approach. Our therapist are well-informed, and can help you in every step of your journey
