"It's a bad period." "It's all in your head." "We didn't find anything abnormal."
"Where are your ovaries?" "Oh that's not normal." "We are out of options."
- Quotes I've heard from medical professionals in the last 10 years
Endometriosis is a common incurable disease where tissue similar to the lining of a person's uterus grows outside the uterus and throughout a person's abdomen, damaging organs and connecting them together. Inside it looks like spiderwebs or dark nodules; outside it looks like a very swollen belly and blood for long amounts of time. The endometriosis tissue mimics a menstrual cycle and sheds causing extreme pain and a host of uncomfortable and debilitating symptoms.
I want to spread awareness about endometriosis and how it impacts people's lives. There is a lot of stigma around chronic illness and "women's" illnesses and I aim to educate people on what this disease really looks like, how it impacts people, and how health care professionals treat people with this disease.
My endometriosis stops physical activities I enjoy like hiking, dancing, yoga, bike riding, scuba diving, rock climbing and so on. I miss being able to keep my space clean without assistance. On good days, I might be up and moving and full of energy and on bad days, I'm stuck in bed and on pain medication. The pain I experience is constant and it feels like my organs are tangled and pulling on each other. My pain can flare up quickly with no warning and can be hard to get under control. The brain fog because of my pain makes every intellectual task take much longer. The myriad of medications I'm prescribed make it hard to function. I miss fun, I miss spontaneity as everything I do or plan is affected by this disease. I miss how quickly and efficiently I used to accomplish art, work, and tasks. I often feel isolated and invisible because of my disease.
I received my clinical diagnosis of endometriosis in spring of 2016 after 10 years of misdiagnosis, chronic pain, medical procedures, and unanswered questions. A few months later, the disease began impacting my life in a much larger way. In August 2017, I had to quit my job after having a six week long flare-up that brought me to a very low point but I've since started a job I'm able to do from home (on the good days). My doctors have made it clear surgery is the next step and they're anticipating a three week recovery time. My upcoming surgery isn't a cure and I might have to have multiple surgeries but it has the possibility to help with the daily chronic pain I experience.
How You Can Help:
I would be so appreciative of your patronage to support this surgery, which is necessary to help ease the decade of pain I've been living through. You can help by sending me words of support, you can donate directly to my medical costs, and you can donate to receive art I'm making about my experience with endometriosis. I also need help with other more physical tasks before and after my surgery.
My endo zine will be a perzine (personal self-published magazine) containing photos of my life with endometriosis, self-care lists, tips on how to live with chronic illness, educational resources, stories of encounters with medical professionals, and the happy things that exist in my life as well!
When you donate $15 or more you will receive my endo zine and art; anything below will receive a handwritten note from me. Any amount helps! Please indicate if you want to donate and NOT receive a zine or art I'm making. Your donations will be helping me cover medical costs of surgery, physical therapy, doctor's appointments, medication, and potential time off work to heal. All donations collected for this project will go directly towards my health and medical procedures.
When you donate $15.00 or more, you will have the option of receiving the zine I'm making about my experience with endometriosis.
When you donate anything below $15.00, I'll send you a handwritten note and photo to thank you.
Note: Please make sure to send me your address. Please indicate if you DO NOT want a zine or art I'm making.
My email for questions, discussion, and contact is firstname.lastname@example.org
Thank you for taking the time to read this page and for supporting me. I can't tell you how much it means to me. I have so much hope!
With Love and Gratitude,
Facts and Resources About Endometriosis:
Endometriosis is the presence of endometrial-like tissue found in extrauterine sites within the pelvic structures including the rectovaginal cul de sac, peritoneum, bladder, bowels, intestines, ovaries and fallopian tubes. It can also be found in the diaphragm, lungs and in rare cases the brain. The spiderweb-like tissue adheres to organs causing constant pain, extreme pain before, during and after periods, pain with bowel movements and urination, excessive bleeding, infertility, bloating and nausea, pain with intimacy, lower back and abdominal pain, chronic fatigue and many other symptoms. No two cases of endometriosis are identical.
Endometriosis affects an estimated 1 in 10 people with uteri which is approximately 176 million people in the world.
70% of teens with pelvic pain are eventually diagnosed with endometriosis.
There is no known cure for endometriosis.
There is no known cause for endometriosis.
Endometriosis can limit and complicate fertility.
Endometriosis symptoms are often "treated" with hormones that can have harmful physical and psychological side effects.
Endometriosis is stigmatized as a "women's" disease and is underfunded in research. Often the "treatments" offered by OB-GYNs and surgeons are the same they were 50 years ago. Very little medical progress has been made to treat and cure this disease.
The three following links are resources if you would like to learn more about endometriosis.
Victoria X defines her endometriosis (This is one of the best video explanations of the disease I've seen - contains gendered language)
Sindha Agha published a video piece in the New York Times about her experience with endometriosis and birth control. (This is one of the best video explanations of the effects of hormone treatment for endometriosis - contains gendered language)
Endometriosis: Understanding a Complex Disease (This in-depth article contains surgical imagery and gendered language)
Nancy's Nook Endometriosis Education (This is an educational Facebook group dedicated to providing accurate resources about endometriosis to patients, family members and doctors. It's a great resource if you or a loved one has endometriosis and I highly recommend this group.)