Endometriosis
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 1 in 10 females. As women, 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 now 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 rarely speak out on social media and I’m sure a lot of women are in the same position. 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. This is especially important right now as this month is Endometriosis Awareness Month.
Growing up, I always had terrible periods (see that was even awkward to write, but it’s okay we’re going to have to keep going because boy is it going to get way more personal up in here!).
I went on birth control when I was 13, way to 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 I decided to get off the medicine 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 dated (poor honey!), my period started getting worse month by month, to the point that in October of 2016 I found myself on the bathroom floor all night sick to my stomach and bleeding way too much, so much I could barely get out of bed the next day because of fatigue. It was the worst pain I’ve ever felt. I’m still unsure if I had a cyst rupture or not.
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 found out that I had 2 cysts, one on each ovary and that the left one was about the size of a golf ball and looked abnormal. She 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. We decided it would be best to do another scan and see what was going on, and sure enough the cyst on my left ovary was 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 fixed?!”. The problem here 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 story, my pain, the fact that my mom had endometriosis and my sister has female health problems. 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 to prep 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 get up and keep going.
My world flipped upside down, and honestly, I buried it. I buried it until this most recent winter when I faced my second surgery (not the same doctor, don’t worry!). I had a great support system; my family, friends and my poor, 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.
Man, 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! 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. This doctor had me on the lowest estrogen pill, one that causes break through bleeding, and was advising me to have a period every month. I learned that pain would be a daily struggle, one that I would mask with strength and a positive attitude. I learned that some days my mask wouldn’t be enough because the pain was too much. I learned to accept my pain, and move through it 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 that I needed to find a new doctor to manage my illness and trust them. 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).
Fast forward two years, approximately 20 or so doctors spanning 3 states, numerous days in pain spent on the couch or in bed, one more surgery, and I’m finally speaking out.
I want to educate others. Not just women who may be going through the same thing, 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.
I felt this was important to share today of all days being that it is International Women’s Day. We need strong women supporting strong women, and we need one another educating 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).