20 women describe what living with endometriosis is like — it’s not pretty, but it’s real
March is Endometriosis Awareness Month, but for the estimated 176 million women who live with the disease, dealing with endometriosis is a daily battle. Endometriosis is a condition that occurs when the tissue normally only found in the uterus migrates to other locations in the body. The pain that this migration causes can be so debilitating that women who have it must opt out from participating in daily activities. Sometimes the pain is so severe that it can cause sufferers to lose consciousness, and it can make the simple act of breathing unbearable.
The 20 women below describe what it’s like to live with endometriosis pain. We appreciate their willingness to talk about the disease so that others can find comfort in numbers.
Pelvic pain is the most common symptom of endometriosis, and in many cases the pain coincides with a woman’s menstrual cycle. In other cases, the pain can affect a woman on a daily basis. And devastatingly, pain is not the only result of the disease. Endometriosis can also cause infertility in 30-40% of the women who have it.
If you’re one of the 10% of women worldwide who is struggling with endometriosis, or if you know someone who is coping with this condition, you know how stifling endometriosis can be. For those of us who haven’t experienced endometriosis, read on to get a grasp of what living with the disease feels like for many.
1“Like my uterus is sitting on a bed of razor blades.”
2“The best way I wold describe it would be like fireworks going off inside you.”
3“I was so acidic that my endo ate through my bowels.”
4“A pain that burned my entire body.”
5“Like someone is taking a cheese grater to my cervix.”
6“You had no idea how many times my brother picked [me] up from the bathroom floor because the pain of my Endometriosis [knocked] me out.”
7“My hips feel like they’re grinding gears.”
8Endo pain comes before labor pain for this fighter.
Comment from discussion StefiKittie’s comment from discussion “What’s the worst pain you’ve ever had?”.
9“A million ninjas with samurai swords slicing into my uterus.”
10When you relate too hard to that Leslie Knope GIF.
11“I can’t attend full-time work because of the pain and there aren’t enough sick days to cover me.”
12“Shooting pain that feels like Zeus is smiting me.”
13“[I] was laying on the floor shaking and vomiting the first few hours.”
Comment from discussion mikakikamagika’s comment from discussion “What’s the worst pain you’ve ever had?”.
14“It feels like my intestines are being strangled.”
15Endo causes full-body pain, not just pain in the lower abdomen.
16“The cramping was so bad all I can describe was that was what death was like.”
Comment from discussion peroctopus’s comment from discussion “What’s the worst pain you’ve ever had?”.
17“It was like period pain but about 3 x worse.”
18The physical pain is often paired with the emotional pain of not being able to carry a child.
19“I feel like someone hit me in the ovaries with [an] axe.”
20“A particular brand of fiery hot, lightning zap nerve pain.”
There are several medications and surgical procedures that one can look into if they’re struggling with endometriosis. Talk honestly and openly with your doctor if you think you might be suffering. In some cases, endo can take up to 12 years to diagnose because primary care doctors, and women themselves, cannot properly recognize symptoms, so be as detailed as possible when describing your pain.
Head over to endometriosis.org to learn more about the symptoms, diagnosis, and treatment options for this painful disease. You don’t have to go through this alone.