Disclaimer: If you're squeamish or can't handle gore do not read this post! Skip ahead! There will be details and photos.
What a better way to discuss endometriosis than with a death metal classic. Not only was my introduction to death metal because of Obituary, but this song always helps me feel better when I'm cramping. It makes me laugh.
What is endometriosis? Taken directly from the John Hopkins website, "Endometriosis is derived from the word 'endometrium' which is the tissue that lines the uterus. Patients with endometriosis have endometrial-type tissue outside of the uterus." This causes the person, to grow extra tissue all over their body, be in constant pain, make other diseases worse, and bloat like we're pregnant. I'm a cis woman so for me the symptoms are pain in my lower back, heavy period with clots, or flesh bits (fibroids), a stabbing feeling on my left side by my hips, pain in my chest (thump, thump, thump), cramps so strong that I had to catch my breath.
Fun fact: Men can get endometriosis as well. If one female family member has endometriosis then the child will inherit the gene or if a man transitions to a woman. This is why Endometriosis is a hormonal disease.
Getting diagnosed with Endometriosis is incredibly hard. I'm going to describe why periods are very death metal. Like most kids who grow up in the Midwest, sex is not discussed at home. Progressive, but Catholic parents wait until your children's school district teaches sex education. They sign the sex education slip and wash their hands of their duty. Never mind, that the teachers use pancakes and strawberry syrup to show how a period works. At the age of 10 it confuses you even more. My reproduction organs are not made of pancakes?!! How does that help me?! I know what a tampon is for, but not how to use it? I have even more questions now. And my Mother's suggestion, is to ask my teacher. Because that's not embarrassing at all! I should be grateful I even had sex education at all, with how Christian the Midwest is.
My period story could have been a commercial. Picture this, I'm 10 or 11. It's the weekend. I'm getting ready for bed. I'm in my pjs and brushing my teeth. I feel like I just got punched in the gut. I dropped my toothbrush in the sink. I feel like I'm sick. I sit on the toilet with the lid on. Then I look down and scream. There is blood in my underwear and running down my leg. I call my Mother in. She comes in and says, "Congratulations, you're a woman, now." She leaves. Typical. Whenever I need her she leaves. When I can do something myself she insists on showing me another way. "I am a woman, hooray! A lot of good that does to me," I say to myself. I experiment with pads and tampons. I change. I go to bed. Charming. I ask my mother if it's normal to have a period for 3 weeks. She said, "No." Then wonders why I'm freaking out. I tell her, "Why won't it end?! I've changed my pad like 50 times." "That shouldn't be happening. My period is three days. You should be like me", my Mom says. Instead of taking me to the doctor like a normal person, she just said, "your period will adjust."
But it doesn't. I'm now 16. I keep going to the nurse's office at school complaining about being dizzy, my sides hurt, and I'm always nauseous. I always have a migraine at noon every day. It's worse when I'm on my period. I end up spending more time at the nurses' office than class. I am sent home with a note to be taken to a gynecologist. I go the gyno. She says I have anemia, but other than that I'm fine. "Pain is a part of a woman's life," the doctor said. I can't believe another woman and a doctor didn't believe me.
I'm 18. I finally graduated high school. But, I have no idea how I will survive college when my period pain has only gotten worse. It's so bad I miss a lot of work days. I get let go. Illinois has no protection laws about firing people. It can be over anything and they don't have to tell you. I attend College of DuPage due to lack of funds and health. I keep missing class because I keep almost vomiting from the pain. My professors start to worry since I'm a great student. One of my professor's asks if I'm pregnant because I constantly use the bathroom. I'm also no longer 115 pounds. I tell them, " No, I feel unwell because of my period." I ask my Dad to book another appointment with a gynecologist. As I wait, I hope to myself that I'll get a different doctor from when I was 16. Same lady. "You again?!" "I already told you, you're too young to have any issues." Doctor idiot puts me on birth control and my mother denies my wishes. Not only am I angry at my mother, but I'm even more angry for not being heard. Back to square pain.
My 20's comes around. In the state of Illinois, 25 is the year, one gets cut off from a parent's insurance. So I go to the gyno one last time. I ask for a different gynecologist. This doctor is worse than the woman. He takes one look at my last name and says, "Ma'am endometriosis is a Caucasian disease, therefore you can't have it. Your complaints of pain could just be IBS." How?! I know my own body! WHY DOESN'T ANYBODY BELIEVE ME?! WHY THE F--- WOULD I WILLINGLY WANT TO BE IN THIS MUCH PAIN?! I used to get diarrhea, constipation, it hurt to have sex with my partner, it even hurt when I peed. All normal symptoms apparently. I've been to many gynecologists and they all told me the same thing, "Endometriosis has no cure." "Even if you did have it, you'd be put under a knife, put on birth control, or just get pregnant."
Mind you, this was when Roe vs Wade was still a thing. Nothing has changed. No one listens to women. I knew I had Endometriosis. Disease doesn't care what you are. I tried everything to lessen the pain. Here's what actually helps:
- Get a laparoscopy
- Regulate your hormones.
- Make sure you go to a Endometriosis specialist. Many gynos still don't know anything about Endometriosis or PCOS.
- Go to a gyno who believes in you. This will make all the difference.
- Take Dong Quai vitamins.
- Eat/drink raspberries.
- Eat dark chocolate.
- Use one of those heated pads that has rice beads in them. They're microwaveable so you can make it as hot as one wishes without burning your body parts.
- Take a bath. The warm water will soothe the aches.
- This is just me: I found that not eating soy also helped keep my estrogen levels normal.
- Always pee after sex! Otherwise you'll get a nasty UTI. Women with Endo are more susceptible to infections.
- Dance. Moving around helps a lot. That is, if you have the energy to do so.
- My personal coping mechanism is to listen to death metal and scream into a pillow. No doubt, if I ever have a kid I could record vocals during my labor.
Fast forward to my 30's. I moved to New York City. I have a doctor, finally! She diagnosis me with clinical depression and adhd. She refers me to a gynecologist. My experience blows my mind. Everyone is polite. No one judges me for my answers. It took my gyno 2 minutes to figure out that I have endometriosis. She pushes down on my sides and I scream. She says, "Yup, you definitely have endometriosis." I said, "That's it! That's all it took?! So you believe me." "I never doubted you," she said. "I hear this story over and over again. Women are not heard. They're called attention-seeking. They're told it's all in their head. But you know your bodies. This is why I do this job. I believe you. I see you," my gyno said.
I have been pain and period free for 7 months. Then Roe Vs. Wade gets overturned. Normally, I would be afraid of my pain management being taken away. But, I live in a state that actually cares about women so I'm good. I just worry about all the other women in the U.S. This story is also why I am a feminist. We all cry wolf until it's too late. Then we die.
Sources:
- https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis
- Google photos
- Youtube
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