Let’s start with some basics: Endometrium lining typically grows inside of the uterus. Endometriosis is when the tissue lining grows outside the uterus For example, the ovaries, fallopian tubes, and pelvic lining.   Endometriosis is a heavily understudied condition that is often difficult to get a diagnosis. Even with a diagnosis, navigating pain management, treatment options, and communicating the implications of endometriosis to partners can be relentlessly exhausting.

Painful periods (dysmenorrhea).  Pain with intercourse.  Pain with bowel movements or urination.  Excessive bleeding.  Infertility.  Other symptoms like fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.

 

There are 4 stages of endometriosis that doctors use to determine the stage of endometriosis. Doctors assign points to what they see as they perform the laparoscopy.


Stage 1 (1 to 5 points)  “minimal”

Stage 2 (6 to 15 points)  “mild”

Stage 3 (16 to 40 points)   “moderate”

Stage 4 (40 or more points)  “severe”

 

Celebs with endo: they’re just like us!
Halsey, Emma Bunton, Jessica Williams, Gabrielle Union, Whoopi Goldberg, Padma Lakshmi
Highly unscientific Unbound poll on how long it took to get a diagnosis:
Shortest time: 3 days (was in hospital) Median: 4 years Longest time: 16 years
Tips for people seeking treatment:

“Look for doctors that specialize in infertility, endometriosis and other reproductive issues. My gynecologist sent me to a pelvic floor physical therapy office & I have been working on getting rid of muscle fascia / scar tissue to reduce my pain. It’s helped me greatly and although it can be intense & uncomfortable at first it is the best treatment I’ve received and is completely natural. It includes internal & external massage, use of electrical stimulation to relax muscles, ultra sound wave use, and stretches. It has helped reduce my pain levels greatly. It also gives you some professional advice on ways to decrease tension in your body so that there’s less of a chance of build up of pain in the long run.”

 

“My first tip is Believe. Your. Pain. Not all doctors or health professionals treat these kinds of concerns with the care they deserve, but know that what you are going through is real and push as hard as you can to have that understood. Chronic pain *is* real, and in my experience an important part of management is giving myself as much space, patience, and tenderness as I’m able. Unfortunately we don’t live in a world that lets us take much time off from work or school when our bodies and minds need it, and my academic, professional, and social lives have certainly suffered for my conditions. But if you are able to prioritize your health even in the smallest, day to day, ways, do so. When it comes to self-care, yes, give yourself permission to cancel plans to stay in bed. Whenever possible, cannabis products.” - Rose, 24

“See a doctor sooner than later. I neglected to go to a doctor when I was feeling abdominal pain, and it resulted in the removal of an ovarian cyst the size of a baseball” - Johanna, 40

“We try new ways and including things like oral and combined masturbation make for the same bonding and release. You just have to listen to your body, your partner, and like anything else be honest about it!” - @lexakubrak, 31

“I use baths to relax and decompress emotionally and physically when I'm having really bad pain days” - Jay, 19

“YuYu bottles, exercise and finding a pain med combo that works for you. A good pelvic health PT can also be very beneficial for those who experience painful sex - but ultimately its about finding a doctor who takes you seriously. Don't be shy about standing up for yourself. Again, as how endo effects individuals can vary, but for us, ensuring I'm relaxed and using pillows under my bum if I'm having a sore episode can really help.” - samantharhiannonwilliams

“Finding a doctor who *specializes* in endometriosis, doing your own academic research, talking to other people with endometriosis, joining endo communities, focusing on pain management strategies rather than “cures.” - @derangedpoetess (Eileen)

“It made me more assertive about what felt good and what didn't. Nonpenetrative sex (oral stimulation, vibrators like the Squish) were the best solutions.” - Hannah, 23

 

toy recs

“Lube!!! penetration can hurt a ton, makes it much easier to move things along ;)”

“Sex toys that can be chilled can help to calm inflammation internally and relieve pain for me.” - dumpsterduchess, 27

“I love my Ollie cause if I am in the mood, I finish quickly and don't have to put much effort it. Plus it's a bonus massager for my poor back” - Liza, 25

“It’s important to find a toy that you are comfortable with and to have multiple toys (dildo, clitoris stimulation like the bean).” - coco_alexis, 27

"I love using crystal wands and glass sex toys, because it’s cooling and overall nice af.” - Nico

 

What folks with endo wish you knew

“It’s real and you can’t always feel it from a pelvic exam.” - @manateelove

It can affect people who aren’t women! I’m a non-binary person and I have endometriosis. Don’t gender your disability talk. Don’t gender disorders/body parts/conditions. I’m not a ~strong woman~ (shout out to strong women though!) but I sure as hell am a strong babe.”  Ivy, 18

“Fertility isn’t our main priority, it hurts not just our “reproductive” organs but so many other body parts!” - Shalisa (@zatcat), 27

 

THE END..O

 

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