Endometriosis. Something that is finally being talked about in our society, but still not enough. Most people aren’t familiar with this chronic illness even though it affects at least 1 in 10 females. We live in an environment where speaking out about female health issues is uncomfortable, awkward, and honestly feels shameful. It took me a long time to learn how to speak out without feeling humiliated or making others want to run the other way; to this day, I still catch myself feeling embarrassed or not knowing what to say. This is a problem and that’s why I’m speaking out publicly and will continue to do so.

Most of my close friends and family know that I have stage 4 endometriosis, but I only began speaking out on social media in the last couple of years. I feel it is important to open up because it helps educate others on an illness that is poorly researched and supported, and unfortunately has no cure.  So, I’m here to tell my story in hopes that more women speak up and create awareness for all female health issues.

Growing up, I always had terrible periods (see that was even awkward to write… but it’s okay we are going to have to keep going because it is going to get way more personal). 

I went on birth control when I was 13, way too young I know, but it was the only thing to help control my hormones and my menstrual cycle. I stayed on birth control until I was 21 and then decided to get off the pill so that my body could be on its natural cycle. I wanted to see if my symptoms were better in my adult life rather than my young teenage years, and they were! For about a year my period was so normal, pain free, and super easy to manage.

Shortly after Sam and I started dating in May of 2016 my period started getting worse month by month. Later that year in October, I found myself on the bathroom floor all night sick to my stomach and bleeding a concerning amount. So much so that I could barely get out of bed the next day because of fatigue. It was the worst pain I’ve ever felt, and at the time I didn’t realize I actually had a cyst rupture.

The next day I went to a new gynecologist and told her I was concerned about Endometriosis. She discredited my concern, told me it was normal to have cramps, ordered an ultrasound for safe measures, and sent me back home with birth control. A week later I received my ultrasound results and found out that I had 2 cysts, one on each ovary, with the left one being abnormal and the size of a golf ball. The doctor advised me to have another ultrasound in 6 weeks to see if the cyst changed, however my pain was still terrible on a daily basis, whether I was bleeding or not. So, she put me on pain medicine: 800mg ibuprofen every 4-5 hours and Tylenol with codeine when needed (which was a lot).  

Three weeks later the pain was unbearable. I could barely walk. I begged for another scan to understand what was going on, and sure enough the cyst on my left ovary had doubled in size. This was the first week of December, and the doctor wanted to do surgery late January. I thought “how can I possibly wait another month to have this addressed?”. The problem was that this doctor didn’t take me seriously from the moment I stepped into her exam room. She didn’t listen to me, my history, my pain, or the fact that my mom had endometriosis and my sister has a history of female health problems as well. She labeled me as a young female complaining of cramps without hearing me or looking at my medical files. I ended up getting in touch with her surgical assistant and booking surgery for that Friday. I had 4 days before for what I thought was going to be a routine procedure to remove a cyst.

I woke up alone from surgery and heard the nurse tell me they successfully removed my left ovary and fallopian tube. I was 23 years old and was just told that half of my reproductive organs were removed without any prior conversations around that even being a possibility. My roommate Blake came around the corner a moment later and recognized that I was given the bad news by the tears streaming down my face and look of pure shock. She squeezed my hand and told me everything was going to be alright, and if it wasn’t for her strength in that moment, I truly don’t think I would have been able to keep going.

My world flipped upside down, and honestly, I buried it. I buried it until January of 2019 when I faced my second surgery with, thankfully, a new doctor. I had a great support system; my family, friends and my sweet Sam that stuck with me through it all and is still holding my hand on my worst and best days. They supported me and consoled me in a time where I really didn’t process what happened. 

I had so many questions. I didn’t understand how this could happen. And I certainly didn’t understand what this meant for my future. According to my doctor’s assistant (because my doctor decided she didn’t need to be at my follow-up appointment), nothing would change. Having kids, no problem. Periods shouldn’t be an issue. Pain, gone! Life would just go back to normal.

If I were only as educated then as I am now.

What I learned was that losing your ovary doesn’t mean you can’t have kids, hello James! It means that half of your eggs are no longer there, so you need to make sure to keep your remaining ovary healthy. It means you could have premenopausal symptoms earlier than expected. I learned that I shouldn’t even have a period, and I should be on a birth control that is of high enough hormones to prevent periods completely (I caveat this by saying I truly believe menstrual health is one of the main tellers for overall health, and it isn’t recommend for everyone to skip periods). I learned that pain would be a daily struggle, one that I can manage with natural remedies, diet, exercise and patience. I learned that although a lot would actually change, this disease doesn’t need to define me.

I learned how important it is to trust your medical team (this lesson came in handy when trying to get pregnant). I learned to not settle for a doctor that didn’t take me seriously or that didn’t listen (there were more than I care to admit).

All this to say, I want to educate others. Not just women who may be going through something similar, but also everyone who supports those women; friends, family, coworkers. Female health is a topic that can’t be pushed aside or covered up because when that happens, we regress. We regress our overall health, our mental health, and the right to stand up for ourselves.

We need strong women (and men for that matter) supporting strong women, and we need to educate each other on female health so that another young female doesn’t have to feel like her doctor isn’t listening to her, or that her pain doesn’t matter. Speak up, because when you speak up for yourself, you speak up for every other woman (credit to Melinda Gates for that one).

J-