Do you, or someone you love, have endometriosis? You are not alone. 1 in 10 people of reproductive age live with endometriosis.
Endometriosis Awareness Month takes place around the world every March to raise awareness. In partnership with the Kitchener Public Library, Diva International Inc. invited our local community to join together for a night of conversation, endo-friendly refreshments, door prizes and resources. We recognize the importance of having these conversations to further spread awareness so we can make a difference for the many people affected by this disease.
- Stacey Jacobs (Sexual Health and Community Educator)
- Alexandra Camara (@yellowbowsxo)
- Keri Martin Vrbanac (Registered Physiotherapist and Clinic Owner)
- Laura Diebolt (Endometriosis Network of Canada) shared their own stories and experiences with endometriosis and answered a lot of important questions.
We learned so much from these amazing women and want to share some of their very helpful insights with you:
Why do you think endometriosis takes so long to be diagnosed?
“Honestly at the end of the day it comes down to funding, awareness and education… If the funds aren’t there to create the education and awareness how is anyone going to know about it?… There’s a lot of misdiagnosis because there isn’t enough education and awareness around it.” – Alexandra Camara
“The one thing I think that is not happening is that health care providers are not asking the right questions. When a patient comes in and provides information to their family doctor, often the medical professional is just not asking the right questions. Endo is not just painful periods, it’s IBS, it is other bowel issues, it brings on bladder issues, infertility, pelvic pain that isn’t anywhere near the uterus. I’m educating my patients and they’re going back to their family doctors. I encourage all my patients to do that, to go back and talk to them about what we talked about.” – Keri Martin Vrbanac
What has been the biggest misunderstanding you have come up against regarding endometriosis?
“I hear all the time as well that all you need to do is take hormonal birth control, everything will be fine, your symptoms will go away, your endo will go away, which we know is definitely not the case.” – Stacey Jacobs
“’Hysterectomy is a cure’ and ‘have children is a cure.’ So, I had kids and it didn’t go away. Then I had a hysterectomy, and then three months after that happened it was found in my thoracic (chest) cavity, so clearly those are myths. Endometriosis is a full body systemic inflammatory disease. If you have endo that resides outside of the uterus and you remove a perfectly healthy uterus, and you leave disease behind, it does nothing. If you had shoulder pain, would you cut off your hand to make the shoulder pain better, because they’re corelated? You’re not targeting the issue.” – Alexandra Camara
“We often hear, ‘you’re too young’, but there have been people as young as 8 with endometriosis. This can be something that exists at a very young age. On the other end you often hear, ‘You’re menopausal, you can’t have endo.’ Or, ‘You don’t have your uterus, you don’t have endo.’ It can still exist.” – Laura Diebolt
What do you wish people understood about endometriosis?
“We need to recognize endo can appear in very many ways in different people’s bodies. I think we have very limited ideas to what this is, and if we can expand that then maybe we figure out what it is sooner.” – Stacey Jacobs
“When they say you’re going to have this incredibly invasive surgical intervention; they’re not cutting your insides out. Yes, it is a surgery, and yes there is risk with any surgery, but the laparoscopic surgery is the best tool we have right now (to diagnose endometriosis).” – Keri Martin Vrbanac
How can we as a community better support those living with endometriosis – an invisible chronic disease?
“Giving spaces so people are able to talk about those things. Especially in the workplace. Maybe you have a boss who is not that understanding or maybe you have a boss who doesn’t know what endometriosis is, so it can be really uncomfortable to have those conversations. We’re not all sexual health educators, we don’t all work in places necessarily where this is an open dialogue you can have every day. Depending where you work these can be really uncomfortable and hard discussions to have. Then if you’re calling in sick every single month, people are going to start wondering what’s going on, but you also shouldn’t have to tell people if you don’t want to.” – Stacey
“Speaking from the pelvic physio side, there is direct correlations between stress and the pelvic floor. I would say four-fifths of the patients I see have some level of anxiety, depression, a strong stressor – and obviously endometriosis is a strong stressor when you’re living with chronic pelvic pain. So, I do address the mental health side of things and we try to make great suggestions for other ways to take care of your health outside of just the physical. I think it’s a crucial part of healing. Mental health is a crucial part of any healing. It’s very hard to live with chronic pain, first of all, but second of all its hard to live with chronic pain and be told you don’t have it…
If your uterus is full of endo you are not great… This is something that needs our attention and we need to talk about it. So, we have to talk, we have to be not afraid to discuss this issue. No one is going to learn if we don’t talk. Talk about your endo, and talk about how you’re feeling, and talk to your doctor. And if they say they don’t know what is wrong with you then tell them to find you someone who does.” – Keri Martin Vrbanac
“What I sometimes say is to ask your partner to ask you what your pain level is today. Ask your family to ask you what kind of pain it is today, because some people experience different kinds of pain. Just so they can kind of gauge where you’re at versus that response of “I’m fine” or “I’m pushing through.” – Laura Diebolt
Audience Question – How do you get diagnosed when your doctor won’t take you seriously?
“It does get nerve wracking walking into a doctor’s office, or a surgeon’s office or a specialist’s office, It’s like, ‘Okay I have to remember all of these things, my pain levels, my cycle levels from the last six to 12 months.’ Track it and write it down, so you always have it with you and then you have something you can share with the doctor as well…
If you do ask for a diagnostic and they dismiss you or decline it, tell them to write it in your file. That’s when things will change, because that’s them saying ‘I’m refusing to do this for this patient even though these are their symptoms.’” – Alexandra Camara
“Bring the bullet points you want them to include in your file. In Canada, if you’re looking for incision surgery, they do not require a diagnostic lab, most of them. You can go to straight to a surgeon if you want to skip it.” – Laura Diebolt
We would like to thank all the strong women and supporters who came out, who listened, who asked questions and hopefully learned invaluable lessons. We certainly did.
If you have endometriosis and live in the Waterloo Region or surrounding area, consider joining the Facebook group: EndoCARE KW.