Since March is Endometriosis Awareness Month, you may recall that I have been working with #MeInEndo to spread awareness about the disease. If not then you can check out the previous post here. After this blog post a nationwide survey was conducted by HealthyWomen in partnership with AbbVie to better understand how much is known by the general public about the disease. The results are in and can be found on healthywomen.org.
Besides, just receiving and reading through the results of the study, I also had the chance to ask Beth Battaglino, RN a few questions. Below is our exchange:
Q: Why do medical professionals commonly not talk to their patients about endometriosis?
A: The HealthyWomen survey results indicate that women have a lack of knowledge and understanding of the symptoms for endometriosis, which is why it leads miscommunication and misdiagnosis among HCPs.
Among 219 women respondents who identified themselves as diagnosed with endometriosis, 42% were told by their HCPs that their pain was simply “part of being a woman,” while 47% had their symptoms described by HCPs as “normal.”
Q: What are other common diagnoses that mimic endometriosis?
A: Endometriosis can be misdiagnosed as monthly period pain, IBS, or ovarian cysts, but there can be a delay in getting any diagnosis at all because women aren’t aware of symptoms or are told that by their HCPs that their pain is normal.
Some of the signs of endometriosis include pelvic pain during or between periods, pain during intercourse and painful urination or bowel movements. Through this survey, our goal is to educate and raise awareness on the symptoms of endometriosis so women can have a conversation with their HCP, an endometrioses diagnosis can be made earlier and treatment options can be discussed.
Q: Is there any talk of pairing with pharmaceutical companies to bring awareness to endometriosis, along the lines of what was done regarding HPV, even without a vaccine or drug treatment?
A: At HealthyWomen we are focused on the importance of educating and empowering women about the symptoms of endometriosis, and providing them with the tools to speak to their doctors and get a diagnosis. Our survey was conducted in partnership with AbbVie as part of its Get in the Know About ME in EndoMEtriosis campaign, a women’s health campaign dedicated to empowering women to learn about and understand endometriosis.
Q: The communication breakdown between healthcare providers and patients seems to be a large factor in endometriosis going undiagnosed or misdiagnosed. What are your suggestions to improve this?
A: It’s all about starting the conversation. Educational resources like HealthyWomen.org and MeinEndo.com provide women with reliable information to learn about and better understand endometriosis. They can use the content and tools in conversations with their healthcare providers.
Women should also feel empowered to share their symptoms and campaigns like Get in the Know about ME in EndoMEtriosis can do that.
Finally, professionals need to be more aware of evaluating and treating endometriosis, understand its impact on their patients’ daily lives and support proper communication of symptoms with their patients. For example, our survey showed that only 34% of HCPs surveyed said they ask if pelvic pain interferes with daily activities at every visit. However, among approximately 260 women respondents who identified themselves as being diagnosed with endometriosis, 86% said the condition interferes with their day-to-day activities at least some of the time.
Q: Do you have suggestions for how women can take the reigns in their own healthcare regarding how to talk about medical concerns?
The best things women can do are to educate themselves, write down your questions, and be prepared to have a conversation, about any symptoms you might be experiencing.
Using a tracker like the one on MeinEndo.com can help women understand the impact of their endometriosis symptoms. Are they daily, where is the pain, rate your pain on a scale from 1-10, does it come and go? The more information you can provide your HCP the better. It’s also important to find a HCP who has experience in treating endometriosis.
Now, couple these findings with the conclusions of studies done on how the medical community handles women’s pain and you can see how much of an uphill battle we have. You can find articles about this topic on The Atlantic, Independent, Think Progress, and various other news outlets and medical journals.
Having more women in the know about endometriosis may not spring forth a cure, however, it can go a long way to improving quality of life. Because you can’t fix what you don’t understand.