What Does Endometriosis Pain Feel Like?
Endometriosis pain is debilitating. In fact, according to our 2020 Endometriosis In America survey, 94 percent of respondents have experienced painful periods, 91 percent have experienced abdominal pain or cramping (unrelated to period), and 82 percent have experienced back or flank pain. Plus, 4 in 10 endo warriors experience endometriosis symptoms every day.
To better understand the realities of living with endo pain, we asked our Endometriosis.net advocates, "What kinds of pain do you experience? How severe is your pain? Are there times when the pain is worse or better?" Today, we are sharing their stories.
“Endometriosis pain feels like a barbed wire fence running across my abdomen. It’s sharp, firey-hot pain that comes in waves. It moves across my abdomen just as quickly as it arrived, so it’s not a long-lasting or debilitating pain that brings me to my knees, but it can easily take my breath away. Endometriosis pain is not something people can see, nor something that I choose to bring to their attention. Instead, it’s another aspect of living with this invisible disease. It’s why I’m so grateful for the community here at Endometriosis.net.”
“My endometriosis pain is relentless. It either affects my back and the muscles in my legs, or it radiates from my insides, specifically from my lower abdomen. On a good day, I just have a subtle, almost buzzing sensation around my lower abdomen. On a bad day, it takes over my whole body. Sometimes, it feels like my legs are being ripped apart from my body. When it gets really bad, it can bring me to my knees, and it can make me struggle to talk. I won’t even be able to keep my eyes open. It knocks me out. My pain levels remain low as long as I exercise, remain mindful of what I eat, and don’t overexert myself. My levels of stress also have a big effect on the type of discomfort I am in.”
“The kind of pain I experience has changed over time, since I was diagnosed 25 years ago. It used to be a sharp, stabbing pain. Now, I experience more of a dull, aching pain that occurs in the lower abdomen. My most significant symptom that interferes with my daily life is the severity of bleeding during menstruation.
I am happy to report that the severity of my pain has actually improved over time. The severity varies from month to month, and I actually haven’t been able to figure out what that variation depends on. My pain is most noticeable during my period, and the pain tends to be worse based on my level of activity. If I’m in any one position for too long, my symptoms get worse. So, I try to alternate my activity throughout the day.”
“I get pain in my pelvis, legs, hips, knee, rib, chest, tailbone, butt, stomach, and shoulder blades. I’d describe it as a mix of throbbing, burning, stabbing, stinging, ripping, and pulling. I get migraines and nerve pain that shoots down the front of my right leg and into my foot and big toe. I get pins and needles and burning sensations in my left arm and fingers.
My ovulation pain is so severe that I mistook it for a rupturing appendix the first time and had to go to the ER. But I don’t have this pain every month. I’ve thrown up from period pain before, and it sometimes makes me break out in a cold sweat if there’s no ibuprofen nearby. I’ve never had a period that wasn’t a 7 to 8 on the pain scale. I probably would have said it was a 10 when I was younger, but I’ve gotten used to it.
My pain comes and goes like clockwork. I do have pain-free days. They’re mostly from the day my period stops up until I ovulate. That’s about 7 to 10 days a month. Ovulation can feel very VERY sharp and achy, but that only lasts around 24 to 48 hours. All of my other random pain – from my chest to my toes – usually increases in intensity from day 12 to 14, peaking about 3 days before my period. Then the ‘hit with a semi-truck of pain’ comes when the bleeding starts.”
“At times, it can hurt so badly that it is almost indescribable. It’s as though my insides are on fire, being cut open and exploding all at the same time. Most of my pain is situated around my bladder, GI, and ovaries. My GI tract sends a shooting pain through my stomach anytime I am going to have a bowel movement. Rectum pain lingers for hours after, and then my bladder begins to want to join in. It almost feels as though someone is standing on my bladder, stomping on it. The pressure and bloat confirm that feeling.
“Many times my ovaries will cause pain as well. This pain feels like a twinge or sharp shooting pain, as if someone stuck a knife into my ovary and is twisting it around. The severity differs day to day. Somedays it is mild, and others it is severe. I haven’t figured out a rhyme or reason yet as to why that is, but no matter which organ is causing me pain, nausea, constipation, and inflammation always follow.
“I thought, at first, a lot of this would occur right before my menstrual cycle, but now have noticed it is happening any time it wants. One thing I do notice is if I eat something triggering like dairy, I do notice a worse episode. When I am moving around, like walking or dancing in the kitchen, the pain seems to be at ease, until I stop. It is just a daily battle of figuring out which organ will hurt and at what part of the day. It is almost like a game of Russian Roulette. You never know what will happen when the trigger is pulled!”
Are your experiences with endo pain similar or different? Please consider commenting below to share your endo story, and check-out our Featured Collection on Managing Endo Pain for tips, resources, and support.
Have you ever experienced a "weird" symptom and wondered if it was endo related?