What Does Endometriosis Feel Like

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What Does Endometriosis Feel Like
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Despite it being one of the most common gynecologic diseases, a leading cause of infertility, and debilitatingly painful, endometriosis isn't a very popular topic of conversation.
The condition, estimated to affect around 5 million American women , typically causes painful periods, an experience too many women keep mum about because we've been convinced even killer cramps are just a fact of life. Staying silent about endo experiences, though, only perpetuates the problem: Women who don't know about it don't know to discuss their symptoms with their doctors and continue to suffer in agonizing silence. (Want to pick up some healthier habits? Sign up to get daily healthy living tips delivered straight to your inbox!)
Endometriosis happens when tissue that would usually grow inside the uterus instead grows outside of it, commonly on the ovaries, bowel, bladder, and elsewhere throughout the pelvic cavity. Because it's uterine tissue, it also bleeds monthly, but the body is unable to clear away this blood, leading to swelling, inflammation, and continued growth of the tissue, often forming cysts. There's little we know for sure about how or why this starts, but it can begin as early as a girl's very first period.
That was the case for actress Lena Dunham, who knew something was off from the very beginning of her menstruating life, as she wrote recently in her newsletter Lenny Letter :
"The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. During the worst of it, my father brought me to the ER, where they prodded my appendix and suggested it might be food poisoning and that we should go home and wait it out. My mother placed a pillow under my lower back, and I moaned in the guest room, where no one could hear me, my legs spread like a woman in labor."
It's a stomach-churning account, one that triggers sickly feelings as you imagine sisters, mothers, friends, and coworkers who are trying to convince themselves each month that everything is just fine. Endometriosis pain—as you will hear from the women below—is definitely not normal. Here's how it really feels, in their own words.
"My symptoms started as soon as I began menstruating at age 11. The easiest way I've been able to personify the pain is it's like someone is crushing your ovaries and uterus with giant hands. The pain would get more and more severe as the day would go on, radiating down to my thighs. I'd be on the couch writhing back and forth clutching a heating pad. I would be in so much pain I would have to cancel plans, stay home from school, or would end up in the nurse's office. In high school, one of my friends accidentally ran over my foot with his car and broke it in four places. My period pain was worse than that. When pain from your period interferes with your life, when you schedule your life around your period, that's not something we should just accept. Don't take people telling you, 'Oh, you're fine,' when you know you're not fine. You know your body better than anyone else."
— Tracy Lytwyn Fischer, 25, who lives in Carmel, IN, and works in communications for a nonprofit. She blogs about her experience with endometriosis at StillSunflowers.com .
"We're always talking about, 'Oh, she's blossoming into a woman.' I didn't feel like I was blossoming. I felt like there were these explosions in my abdomen."
— Padma Lakshmi, 45, food expert, model, author, and cofounder of the Endometriosis Foundation of America, in Lenny Letter
"From my very first period at 12, I would vomit and black out with pain. I had a high temperature and was extremely shaky and had to spend days in bed. I have 10- to 15-day periods, anemia, and severe cramps. It started to get even worse in my late teens and early 20s, where I would just get struck down by this horrendous pain, like someone was carving out my uterus with a knife, and all I could do was cry. In the past year, the symptoms developed into constant fatigue , headaches, IBS, cystitis, and chronic pain; I mean, not a single second without pain, down my legs, in my back, in my bottom. It turned out I had a huge endometrial cyst inside my left ovary and severe endometriosis. I feel completely alone with the disease and find myself having to pry sick notes out of my doctor's hands because they can't understand why I'm not 'better.' News flash, it's incurable. I lost my job 2 days before my first surgery; they were sick of me calling in sick. I haven't worked since and can't work. The pain has changed my personality. My confidence is gone, I don't sleep, I'm weak, I'm sad, I'm constantly hunched over with my face screwed up. I long for a day to wake up and feel no pain, to look at myself in the mirror and not see a gray-faced crying woman I don't recognize. We need help, we need support, and we need understanding."
— A 25-year-old from the UK who asked to remain anonymous
"It feels like someone is taking a pickax to my uterus and trying to break out."
— Alexys Becerra, body piercer and makeup tattooist, via Prevention Facebook
"I started having painful periods in my early 20s, and I was immediately put on the birth control pill to manage those symptoms until I was about 27. Then I got off due to health concerns about heart disease in my family. About 24 menstrual cycles later, the pain started to wake me up in the middle of the night. Each month, the pain got worse and worse. I was taking more and more ibuprofen. I would shut my office door and lie down on the floor, trying to squeeze acupuncture points on my heel that I was told could help with pain management. Ibuprofen started not working; it wasn't strong enough. I would experience a very uncomfortable pressure in my bladder in the days leading up to my period, which turned out to be because the endometriosis was growing there. I was on Vicodin in the summer of 2008, and that wasn't helping either. I delivered my two girls without drugs, and that doesn't not hurt! Endometriosis pain is worse than childbirth."
— Nicole Havrilla, 40, blogs at SurvivingEndometriosis.blogspot.com and is currently working toward opening an endometriosis clinic in Dallas-Fort Worth called WholeLife Authentic Care .
"It felt like a knife was being stabbed in me."
— Julianne Hough, 27, dancer and actress, in People magazine
"For as long as I can remember, I assumed pain was part of getting your period and that it was not unusual to feel sick. I remember missing school because I would be curled up in bed with unbearable cramps. This is the way it was for my mom and some of my aunts, so they considered my symptoms normal. Sometimes I was unable to walk due to the pain. Other times, I would get lucky and go months without pain. One Christmas Eve, I woke up with pain so unbearable I was rushed to the hospital. After several tests, the doctors still didn't know what caused my symptoms. I had a follow-up appointment with my ob-gyn a week later, and it was then that I was diagnosed. I was 28 and had never heard of endometriosis before. Because I assumed pain with periods was normal, I had never brought it up to my doctors."
— Christina Kim, 31, a full-time mom in Manhattan
"One month, I couldn't even go to work. Sometimes it would hurt so bad I didn't want to eat. A heating pad would sometimes help, as well as pain relievers. I'd always think, If this is how periods feel, then I don't want to know how labor feels ."
— Janemary Vongdara, via Prevention Facebook
"I always had terrible stomach issues. It was not uncommon that after eating I would have diarrhea or vomiting. I suffered with rectal bleeding with bowel movements. In my early 20s, my period cramps started becoming debilitating. I was gaining weight and had visible bloating. I went on to have severe back pain, leg pain, rib pain, and urinary frequency. My gynecologist told me I just had a low tolerance for pain. My gastroenterologist diagnosed me with irritable bowel syndrome at the age of 19, and I had my appendix removed at age 23. I also went on to have my gallbladder removed. Neither surgeon mentioned endometriosis. I had never heard of endometriosis before, even though I later found out that my mom and aunts had terrible periods and most likely had it. I've had two excision surgeries to remove endometriosis and scar tissue from my bowels, bladder, uterus, and diaphragm. Many people dismiss the disease because they are not educated and do not understand how serious it is. This lack of support and understanding isolates patients. People think women are playing sick or are just weak. Endometriosis patients are some of the toughest women I have ever had the privilege of knowing. Everything we accomplish—from simple everyday tasks like doing the dishes, to the bigger milestones like graduating school—takes more determination and energy than it would for many other people."
— Casey Berna, 36, a social worker, counselor, and advocate for endometriosis and infertility patients in North Carolina
"It is not a woman's lot to suffer. I know we've all been raised that way, but it is not. It is not OK to miss a part of your life because of pain and bleeding...Suffering should not define you as a woman...I'd had difficult periods, I'd been through fainting when I was in college, I started to bleed for no reason."
— Susan Sarandon, 69, actress, in a speech at the Endometriosis Foundation of America's 2011 Blossom Ball
"I kept it all very private. Anything that's related to your menstrual cycle is very taboo to talk about in our society. A lot of the emotional and psychological issues all went into my artwork; it's influenced my work tremendously. A week before my period, I would have really, really sharp abdominal pain for at least a couple of hours. I would have to stop whatever I was doing and just lie down or crawl to a place where I could. I would wait it out in fetal position wherever I was. I was lucky that the first gynecologist I went to about this happened to know about endometriosis. He put me on birth control pills, and I threw away the last week to stop my period. I did that for 2 years, but I hated it. Emotionally, it made me really up and down, and physically the weight gain was unpleasant. I took myself off and was symptom-free for a good 7 years, except for severe digestion issues that I thought were just due to stress. Then at some point the sharp pain started happening again. I had an ultrasound, which doesn't usually show endometriosis, and my right ovary was three times its normal size. It felt like a knife stabbing my abdomen. I had the cyst on my ovary removed, but 6 months after surgery I was back in severe pain. I was at my wit's end and finally found an endometriosis specialist who did surgery a month later. He performed a 5-hour procedure and removed my appendix and found 25 specimens of endometriosis basically everywhere below my belly button. He told me I had a very small window if I ever wanted to have a child. My son was born on July 31. I'm breastfeeding now, so I haven't had my period yet. I've heard that the endometriosis could grow back and I'll experience the same pain as before. Or it could go away completely after having a child. Or it might come back but not as severe. So far, I haven't had any symptoms."
— Kyung Jeon, 40, an artist and graphic designer in New York City

Endo Feels: What Endometriosis Feels Like, and How to Tell If You Have It
Endo Feels: What Endometriosis Feels Like, and How to Tell If You Have It
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Endometriosis is a chronic disease and can be, for some, incredibly painful and debilitating. If you are a woman who has suffered from any sort of abdominal discomfort, you may come across Endometriosis during your search for answers. While not every pang of pain in your belly is going to mean you have Endo, it’s certainly worth knowing more about it to ensure you aren’t overlooking its possible symptoms, especially since it is thought that 1 in 10 women of reproductive age in the UK have it. 
"I was recently diagnosed after years of suffering and finding myself doubled over backstage in the middle of my sets, or fighting back tears on an airplane, or even being in so much pain I would vomit or faint… Finding out that I had Endo was the most bittersweet moment because it meant I wasn’t crazy!"
Endometriosis happens when tissue similar to that of the lining of your uterus (endometrium) begins to grow outside of the uterus. It shouldn’t be there, so it starts to cause all sorts of problems. These growths are sometimes called lesions, and can cause severe pain and inflammation throughout the month, not limited to during your period.
According to SpeakEndo.com , when considering symptoms of Endometriosis you should remember the three Ps; painful periods, pelvic pain, and pain with sex. If you do suffer from these three symptoms, it’s advised that you speak to your doctor to discuss the possibility of Endometriosis (although if you have even one of these symptoms, you can still talk to your GP, as none should be occurring). Other symptoms to look out for are:
As well as the above, it is estimated that around 20% of women with endometriosis also suffer from other chronic pain conditions such as IBS (irritable bowel syndrome), cystitis, and fibromyalgia.
Whether you have one or all of the above symptoms, endometriosis is notoriously hard to diagnose because symptoms vary so drastically from woman to woman. For this reason, it is often only officially diagnosed by exclusion, which essentially means by process of elimination, and this can take months, if not years.
“It’s not just during your period, it’s throughout the month… It makes me so tired that I’m extremely nauseous. It’s very debilitating. I can’t get up in the morning sometimes or it interferes with my daily activities. It really has affected my quality of life.”
Endometriosis is so different for each individual sufferer. It’s important to speak up about your symptoms so your doctor can help you diagnose possible endo and treat it in the best way. Having helpful conversations with your doctor can lead to better understanding of your particular case, and a potential quicker diagnosis overall. At the end of the day, pain isn’t normal. If you are at all unsure, talk to your doctor about what you’re feeling and don’t be afraid to be persistent if something doesn’t feel right.
"I was told by my doctors that I had a ‘low threshold for pain’ and that I should just get used to it because there was nothing that could be done… Well, it turns out I have a really high threshold for pain. Most women do, we have to."
- Padma Lakshmi, TV Host and founder of the Endometriosis Foundation of America
While there is currently no known cure for endometriosis, your doctor might recommend painkillers, hormonal birth control, medications to reduce estrogen levels, a procedure called a Laparoscopy to diagnose and remove Endo lesions, and a number of other treatments. Understanding your symptoms and being able to communicate how you feel to your doctor, family, friends and even colleagues at work, can help you gain the support and treatment you need to reduce the pain you experience.
Do you suffer from endometriosis? We’d love to hear about your experience so we can help others who suffer from this condition. Head on over to our private Facebook group or drop us a note on Insta @itsyoppie . Don't forget that our personalised period subscription box can get endometriosis supplements , organic tampons , pads, liners, and much more, delivered easily and regularly through your letterbox. That's one less thing to stress about.
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Shireen has lived with endometriosis since the age of 12. Now in her thirties, unable to work following a flare up from the disease, Shireen juggles daily life and motherhood with writing over at EMLWY (Endometriosis: my life with you) – a blog about her life with endometriosis, the curveballs of mental health, infertility and fertility treatments, and further diagnoses of fibromyalgia and borderline osteoporosis, while sharing information on the disease and other women’s stories.

Shireen has lived with endometriosis since the age of 12. Now in her thirties, unable to work following a flare up from the disease, Shireen juggles daily life and motherhood with writing over at EMLWY (Endometriosis: my life with you) – a blog about her life with endometriosis, the curveballs of mental health, infertility and fertility treatments, and further diagnoses of fibromyalgia and borderline osteoporosis, while sharing information on the disease and other women’s stories.
Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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It’s difficult to describe pain. When we talk to our doctors, we usually try to describe pain with words like “sharp” or “dull,” or by using a pain scale from one to 10. I’ve never felt I’ve been able to fully convey how endometriosis actually feels, and I’m often left with the sense that others think it’s not as bad as we are making it out to be, especially since the pain is invisible .
I often see women asking what endometriosis feels like because they think they might have it. There are many similarities between endometriosis pain and the pain that a woman would feel during her period , which I think is why endometriosis is commonly mistaken for a “ bad period .”
So, what does endometriosis feel like? Endometriosis pain can vary from day to day (even hour to hour!), and it’s different for every woman. Some feel pain constantly, whereas others might only be in pain around the time of their period. As someone who has lived with endometriosis for 22 years, this is what it feels like for me:
Abdominal pain is the most common symptom of endometriosis. For me, this pain varies in strength and type. Some pains can come and go, whereas others will affect me for days afterward.
Leading up to and when I am on my period, I get a dull, low ache around my ovaries. My tummy begins to feel heavy and empty, and the pain lightly burns. When my peri
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