How to Advocate for Yourself!

     As many of us know all too well, being a woman seeking medical help is not easy. Years of stereotypes and sexism toward woman makes it extremely difficult for women to feel heard and believed when talking about pain, especially if it has to do with reproductive organs. I saw a post going around recently that said "Imagine if there was a chronic disease that caused men so much pain that they willingly underwent major surgery to remove their reproductive organs, based on a wild theory that it might 'cure' them. Just imagine." If endometriosis was a disease that affects people assigned male at birth, we would 10000000% have a cure right now, but we don't which is why it is so important to advocate for yourself. Since March is Endometriosis Awareness Month along with Women's History Month, I thought this would be a good post because it is something all women have experienced at one point or another. 

    When I was first trying to find a diagnosis for the mystery chronic pain I was having, my mom had to advocate so much for me because no doctor certainly was (even the female ones). As I've gotten older and now that I'm an adult, I think I am pretty good at advocating for myself because I know my body better than anyone. Now living with endometriosis for officially over five years, I can tell what's normal for my body and what's not, which is why I spoke up when I started noticing bladder problems in the fall. Unfortunately, many people with chronic illness, in general, have lost trust in the medical system because they have been told they are lying, being dramatic, or straight up ignored countless times (I haven't read a single endo book that doesn't talk about this). However, I've learned that if I go to my appointment confident with my questions and concerns written down, I'll actually make some progress. 

    Since I just bragged about being so good at advocating for myself, I want to give you my tips because I think this is so important. 

1. Write down all of your concerns (what pain you're having, triggers for it, when it started, etc.)
2. Write down every single question you can think of (you don't want to leave the appointment and realize you forgot to ask something)
3. Do some research on your own and come up with suggestions about what could be causing your pain (you could come up with something your doctor didn't originally think about, it's happened to me)
4. Be confident in your pain and know it is not in your head (unfortunately doctors may tell you this, but you know it's real)
5. Be firm with your requests and concerns, and schedule follow up appointments to make sure you aren't forgotten (doctors see so many people a day, you want to stay clear in their minds)

I know all of these tips are easier said than done, but if you keep practicing, I promise you can do it. Nothing bad has ever come from me speaking up for myself and every time I do, I am so happy with my decision. Good luck and feel free to message me @endoisnottheendblog on Instagram if you want to talk!

My Endo Story but Written By My Adult Self

         June 10, 2015 is a day I will never forget. I thought it was just regular period cramps, but the extreme pain never went away. This day forward started the long journey to a diagnosis for this mysterious chronic pain. Endometriosis is a chronic disease that happens when uterine-like tissue grows in other places both inside and outside the pelvis, causing debilitating chronic pain. Looking back at it now, I started having pain when I first got my period two years before, but we’re taught that bad period pain is normal, so I never thought anything of it. I told my parents about this pain I was having constantly and we started going to doctor’s appointments. First to my mom’s gynecologist, then a gastroenterologist, a surgeon, the emergency room; they all dismissed my pain. Nothing came up on endless ultrasounds, CT scans, and x-rays. “You’re just being a dramatic teenager.” I heard this over and over again and it was so discouraging. I started to actually think it was all in my head until one day, months later, a lightbulb went off in my mom’s head when she in the midst of her endless research on what could be wrong with me: endometriosis. She remembered her mother and sister both struggled with this disease and she had a gut feeling I was too. “Teenagers can’t have endometriosis,” the gynecologist said, which couldn’t be further from the truth. I had never even heard of endometriosis before, but it was the first time I ever had hope throughout this whole process because I had all the symptoms. After much aggressive persuasion from my mom, my local gynecologist, who I never went to again after this, referred me to the adolescent gynecology clinic at Boston Children’s Hospital. 

         Within five minutes of sitting down with the world-renowned doctor there, he was certain I had endometriosis, and that day we scheduled the surgery to know for sure (endometriosis can only be diagnosed through surgery as it doesn’t appear on any imaging technology). A few weeks later, I had my first ever surgery, and just like my doctor suspected, he found endometriosis. Luckily we caught it early enough that it hadn’t done any serious damage yet, however that doesn’t mean it’s cured. It’s hard for people who don’t have chronic pain to understand the excitement that comes with getting a diagnosis, however, that’s what I felt. I was so happy to finally have answers and know that this pain wasn’t just in my head, but I also knew I had a long road ahead of me now living with a chronic illness. Although I’m in a lot less pain now after having surgery, I still have the day-to-day symptoms of chronic pelvic and bladder pain, back pain, pelvic floor dysfunction, and chronic fatigue. I try my best to combat these symptoms through birth control medication, pain medication, pelvic floor physical therapy, and of course, my trusty heating pad. However, the truth is, some days are just plain bad and I just want to lay in my bed with my heating pad and Netflix, and that’s okay. When I was first diagnosed, I wish someone told me to listen to my body and not push if I didn’t feel good. Now, I pride myself for being very in tune with my body and knowing my limits. Since being diagnosed five years ago now, I started a blog called “Endo Is Not the End” to help others like me so they don’t feel so alone. If you were just diagnosed with endometriosis, I know it feels so incredibly lonely, but I promise there is a whole community waiting to support you, so come find us.