The Unbound Guide to Endometriosis

Endometriosis is a medical condition in which tissue that is similar to the lining of the uterus (endometrium) grows outside of the uterus, typically on other pelvic organs such as the ovaries, fallopian tubes, and the lining of the pelvic cavity. In rare cases, it can also grow in other parts of the body.

Symptoms include (but are not limited to!) chronic pelvic pain, painful periods (dysmenorrhea), pain during or after sex (dyspareunia), infertility, heavy menstrual bleeding, fatigue, bloating, and gastrointestinal issues.

Since the medical system in the US is a poorly run corporation with a relentless commitment to dismissing pain, there is typically a healthy dose of difficulty and delay when diagnosing and treating endometriosis. The work of advocates and people with platforms sharing their experience has shed some light on this condition and raised awareness in the medical community as well. Still, Endometriosis is under researched, under treated, and largely misunderstood. Since symptoms often align with other conditions, getting a diagnosis can take years. As with many gynecological conditions, patients are left to navigate Endometriosis without the consistent support of a medical team.

In this guide we've collected data from our community, as well as some other factual tidbits, to help educate on the reality of living with and diagnosing Endometriosis.

What has been the most difficult part of your endo journey? Graph

The increase in conversation and awareness around Endometriosis is largely attributed to people sharing their experience with this incredibly difficult condition. Not just celebrities but regular degular people sounding off on social, at brunch, in mom groups- all of it has helped open the doors to more broad understanding around this condition and how dang hard it is to get a diagnosis.

The following section includes open ended questions from our survey.

What advice do you have for someone who is navigating Endometriosis?

Request visit to a gynecology or endocrinology clinic, and don’t downplay your pain levels because you’re used to the pain. Mention bloating before and after period, IBS and dizziness. Request an MRI -Simone, 32

Keep a log. Get a folder, a binder, anything. Track your symptoms, get copies of medical reports. Build a framework of what's going on to help back you up when advocating for yourself. -Kay, 32

Community. Community. Community. Find your people. Make a plan before, during and after doctor’s appointments. Record everything they say (I use voice memo) as well as take notes. Track your cycle, your moods and your symptoms. Do not let them dismiss your pain. -Anahita, 22

Don’t settle for anything less than a compassionate doctor who truly understands and BELIEVES you. It may take 2 or even 10 tries, but there are some good doctors. Don’t give up. -Kiki, 36

How has Endometriosis affected your sex life?

Ugh in the worst way….. it’s affected everything. But! The toys help, they keep me spicy. It helps having an understanding partner who realizes how much pain I’m in. -Kiki, 36

Well I’m gay and I don’t let partners use dildos on my and I’d rather practice anal on myself because I can’t deal with the vaginal pain. If I am feeling in the mood for vaginal play then lots and lots of silicone lube is in order. -Mille, 26

It has made it more difficult to have consistent sex, and, it has really inspired me to extend my definition of sex/ of pleasure and intimacy. Kink & BDSM have been incredible. Lube is my best friend but mostly it’s making sure I am sleeping with caring people who will prioritize my comfort and safety before their pleasure <3 and getting creative. -Anahita, 22

I'm in pain with arousal so I always sort of have to balance it with pleasure, so I have intense vibrators and stuff. A good partner to snuggle with after while the pain is still there helps too. -Maddy, 19

What's something you wish more people knew about Endometriosis?

I wish more people knew how normal yet unnormal it is. Your symptoms and pain are normal for your diagnosis. But you don’t have to live in pain every day because of it; treatment exists to manage your symptoms. -Ash, 22

It can not be cured by meditation or a juice diet -Belle, 35

That there’s not enough research surrounding it. More studies need to be conducted! The pain and stress is real and people who have deserve to have answers. -Cyndi, 27

it is a dynamic disability meaning, my symptoms can vary from not only month to month, but week to week, day to day sometimes even hour to hour. I promise you we are exhausted by this inconsistency too ❤️‍🩹 -Anahita, 22

Thank you to all who contributed to the survey. We really appreciate the opportunity to share.