If you have a uterus, you know what I mean when I say that they can be a real pain in the neck. Or, in my case, a pain in the pelvis, abdomen, hips, legs, and wherever else my body has decided to complain about. Listen, I love my uterus, she’s cool, but she’s caused me a whole lot of trouble in the last 8 years. My endometrial lining loves to go places it doesn’t belong, while simultaneously flushing out more blood than I thought I actually had within my body. In other words, I have chronic endometriosis. Don’t know what I’m talking about? March is Endometriosis Awareness Month, so buckle up and get ready to be aware as heck.
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Endometriosis (“endo” for short) is a gynecological disease in which, according to the Retrograde Menstruation Theory, tissue similar to the uterine lining (aka, the endometrium) travels backward through the fallopian tubes and latch onto the inner sides of your abdomen. The endometrial-like tissue can then form lesions and scar tissue around the uterus, ovaries, and other abdominal organs. [1] Yes, it sucks just as much as it sounds. The growths are painful and can restrict movement. Uterine tissue growth is dependent on your estrogen cycles, so endo usually develops in the years between your first period and when you start having kids. Prevalence of endo in America is usually cited between 6 to 10% of all women of reproductive age. [2] There’s a relatively large percentage gap because, though it’s improved in the last 10 years, there’s not a lot of research done on endo.
Keep in mind that when I talk about my experiences with endometriosis, that’s exactly what they are: my experiences. I can’t speak for the thousands of other women who have different symptoms than me and have received different advice and treatments from doctors and other resources. My experiences are not the end-all-be-all of endometriosis, and if you’re curious about more aspects of endometriosis, there are a ton of amazing support groups on Facebook that I recommend checking out.
My endo journey began when I was 12 years old. I was in 6th grade, it was February, and we had a snow day. I was watching TV, paused the show to go to the bathroom, and realized I had hit “menarche,” the medical term for your first period. I don’t really know if you could call my period a period because “period” refers to the period of time out of the month that you’re bleeding. Once I had my first period, I really didn’t stop bleeding. The period became the entire month, and the next month, and the month after that. That sounds dramatic, but it’s kind of true. I would have my “periods,” that lasted around 14 days and were horrifically heavy, and then I would have the other 2 weeks of the month, where I would having spotting that consisted of about the same amount of bleeding as a healthy person’s normal period. The next 9 months were pure hell. Imagine being in sixth grade, which is already terrible, but then constantly being on your period (at an age that girls don’t talk to each other about periods yet), and also having such a heavy period that you bled through your pants. Every. Single. Day. I changed my maxi pad every 1 to 2 hours. It was bad. My doctor kept telling me it would regulate itself out, but it never did. Nine months after my first period, in November of 7th grade, my family took a trip to Hawaii. It was supposed to be fun, but I have some pretty traumatic memories of my parents trying to convince me that it would be fine if I went swimming, or wore a bathing suit, or didn’t have access to a bathroom at all times. I don’t blame them; they didn’t understand the extent of the situation. I spent a lot of that trip in pain, crying, and sitting in my own blood. When we got home, my mom told she was taking me to get birth control pills. Once again, my doctor said that it would regulate itself out eventually (it never did), but that she would prescribe me some birth control pills to help lighten the bleeding. They worked pretty well for the first 6 months, but then it was like the Hawaii vacation all over again. I went back to my doctor and she prescribed me a new type, with more hormones. They worked for a while, then stopped. I went back to the doctor and she gave me new pills. This cycle repeated about every 6 months to a year, from 7th grade to the month before I went to college. In my lifetime, I’ve been on 9 different types of birth control pills of varying hormone levels and treatment cycles, all between the ages of 12 and 18. During those 6 years, not one doctor entertained the thought that I had endometriosis.
The problem is, endometriosis symptoms like heavy bleeding, painful menstruation (dysmenorrhea), body aches, and stomach aches are often written off as “bad periods.” To call endometriosis a bad period is an understatement. Before coming to college, I had seen 3 different gynecologists. It doesn’t seem like a lot, but it can be super difficult to get an appointment with a specialist. Appointments are made many months in advance, and the entire process of finding a new doctor is tiring and stressful. And, unsurprisingly, all of my gynecologists were men over the age of 60. I don’t have anything against men being doctors, but if I have to hear someone without a uterus telling me what a period feels like ever again, I might actually go into cardiac arrest right then and there.
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Unfortunately for my poor, sad uterus, I was dealing with some other medical issues at the time, specifically mental health. I’ve been an anxious kid my entire life, but everything became particularly bad in 8th grade and then never left. I was sad and nervous all the time, hiding away in my room, and living in a food cycle of binging and fasting. It didn’t help that I had unexplained chronic pain and bleeding, especially for hypochondriac I was. The more pain I was in, the more scared I would get, which would make me tense up and cause more pain. The sadder I was, the more upset I would get, which would make me tense up and cause more pain. My anxiety was making me sick, and my sickness was making me anxious. The worst part about the entire experience was that every single doctor I saw during that time period said that my pain was psychosomatic, and that I was just “stressed,” or “anxious,” and that this was common for teen girls. (To sum that up for you, these medical professionals dismissed their patient’s pain because she was a girl and she had anxiety. That’s the kind of medical culture we’re living in.) They acted as if mental health was a small thing, and I could fix all of my problems if I just stopped “stressing out.” It’s funny, for a person who has wanted to be a doctor her entire life, I kind of hate doctors. I had done so much googling on anything related to my symptoms and I brought up the possibility of endometriosis multiple times. Each time they brushed it off. Every time a doctor dismissed my pain, my health, and my general wellbeing, my endometriosis worsened. Seeing that my birth control pills were ineffective, I was chronically ill and untreated for close to 7 years.
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Everything turned around when I started college. The August before I went off to school, I finally convinced my gynecologist that I should be put on Depo Provera. Depo is a progesterone shot, which stops the growth of uterine lining, halting the further growth of endometriosis. While I’ve had my fair share of problems with Depo (read: insurance companies suck), my quality of life is so much better than what it was. The progesterone stopped my periods all together, and significantly reduced my pain levels. While I still have pain from old lesions and scar tissue, my body is currently no longer creating new growths. (Depo Provera is one of a few treatments available for endometriosis, and works well for me. Depo isn’t right for everyone, and there are a couple other options if you’re looking for something else.) Overall, the Depo made a great impact on my health, but the best thing that’s happened to me in a while was finding Dr. Christianson at Elson Student Health. Dr. Christianson works in the Student Health Gynecology department, and she is nothing less than amazing. Last winter, I went to Student Health Gynecology because I knew I needed to find a new gynecologist if I wanted to continue my Depo treatment. I explained everything to Dr. Christianson, who listened to my 7-year story for 45 minutes, and she told me I had endometriosis almost immediately after I finished talking. She said that everything I said lined up with all of the symptoms, and the fact that a progesterone treatment typically used for endometriosis was helping me corroborated her diagnosis. She then continued to sit with me for 2 hours, explaining everything I needed to know, drawing diagrams, explaining what was happening, planning out potential treatment plans, and filling my hands with informational brochures and business cards of specialists I might need to see at one point. For the first time in my entire endo experience, a doctor took me seriously. While my other doctors had relied on medically outdated, sexist gynecological practices, Dr. Christianson is always reading the latest papers about discoveries and advancements in her field; I see them in the basket on her door. Unlike my other doctors, she actually cared about my treatment plan and wanted to see my health improve. You wouldn’t think this had to be said, but make sure to find doctors that care about you and your health. I know how hard it is, but it turns out that they actually do exist.
Now we’re here. I’m doing so much better than I ever thought I would. Of course I still have bad days, but nowhere near as bad as before. There is one good thing about having endometriosis though, and it’s being able to talk about it (and I sure do love to talk). I said earlier that there’s not a ton known about endometriosis, and if we don’t talk about it, research will never get done. The more people know about it, the more people will bring it up to their doctors. More doctors might take it seriously, and the more people will be treated. That’s why Endometriosis Awareness Month is so important, people just aren’t aware that it exists. I know that I’m breaking the fourth wall as hard as I can right now, but readers, if you experience any of the symptoms I talked about and you go to UVA, make an appointment with Elson Student Health Gynecology right away. You don’t actually have to feel like crap all of the time. I know, it’s crazy! Know that menstruation isn’t supposed to be horribly painful. Periods can be heavy, but they’re also supposed to follow a normalized cycle, not emulate Niagara Falls 24/7, 365 days a year. That gross analogy brings me to another reason I talk about endometriosis: it’s okay to talk about chronic illness and gynecological health. It’s not taboo, it’s not disgusting, it’s a human body doing a human thing. If we don’t talk about it, nothing will ever change.
You’ve heard my story, you’ve heard my woes and glows, you’ve heard me stand on my feminist soapbox and rant about sexism in medicine. Did you expect anything else from a typical Summer Harvey ™ article? And what would an awareness article be if I didn’t give you some ideas of how you can celebrate Endometriosis Awareness Month. Want to get involved? Here are 5 things you can do in March to show uteruses some support.
- Pull out those spring colors and flaunt some yellow, the color of the endometriosis ribbon!
- Take part in the Worldwide Endometriosis March on the 24th. Find a march near you here: http://www.endomarch.org/
- Donate to the World Endometriosis Research Foundation here: http://endometriosisfoundation.org/fundraising/get-involved/
- Hold a “period drive” for a local women’s/homeless shelter. Feminine hygiene products can make or break quality of life with endometriosis, and they’re also unfortunately super expensive. Collect donations of new, unopened packages of pads, tampons, menstrual cups, etc., and spread the word about endometriosis while you’re doing it.
- Talk openly about gynecological health and chronic illness. Actively hold discussions with friends about what you can be doing to end the stigma around endometriosis and menstruation, and make an effort to speak respectfully and positively about chronic illness.
Resources to learn more about endometriosis:
This video explains endometriosis, how it works, and different types of treatments: http://endometriosis.org/resources/articles/symptoms-treatment-and-support-for-endometriosis/
Endometriosis.org has a lot of great information, resources, and events listed on their website! Check them out here: http://endometriosis.org/topic/resources/
Bibliography:
- Vercellini, Paolo, et al. “Endometriosis: Pathogenesis and Treatment.”
Nature Reviews Endocrinology, vol. 10, no. 5, 2013, pp. 261–275., doi:10.1038/nrendo.2013.255.
- Giudice, Linda C. “CLINICAL PRACTICE: Endometriosis.” The New England journal of medicine 362.25 (2010): 2389–2398. PMC. Web. 5 Mar. 2018.