Endometriosis, a condition where tissue similar to the uterine lining grows outside the uterus and sheds during every menstrual period, is still not very well understood. In order to clear up misconceptions about the disease, people who have it want the world to know just
what endometriosis feels like — and how bad the symptoms from intense back pain to purple period blood, can really be.
"Sadly, endometriosis has yet to have a truly successful treatment for the pain it generates,"
Dr. Felice Gersh, M.D., an OB-GYN at Integrative Medical Group, tells Bustle. Symptoms can include serious pain, cramps, bleeding, problems getting pregnant, and difficulty with pain during or after sex; and treatments range from hormonal medications to surgery. "The elimination of female hormones and rhythms [to treat endometriosis] has many associated problems and failures," Dr. Gersh says. Scientists don't know why endometriosis occurs, even though it's pretty common — it's thought to affect roughly one in 10 people with uteruses who are of reproductive age.
It also takes
an average of 10 years and eight doctors for people to get an endometriosis diagnosis. "I have been misdiagnosed for the last 11 years as having Crohn's, then IBS, and then finally last year I was diagnosed with endometriosis and basically had emergency surgery," Danielle, 29, tells Bustle. "It had spread throughout my whole pelvis, rectum, colon, vagina, small intestines, and all the way up to my fourth rib."
There needs to be more awareness of what the condition feels like, endometriosis patients tell Bustle, because it might help lower that diagnosis time — and get people the help they desperately need earlier. Here's what living with endometriosis is is really like.
Stage IV endometriosis, and in addition to the regular pain that I've become accustomed to over the years, [I] have such severe scarring from past surgery that my doctors estimated my chances of naturally conceiving at less than 1%. The endometriosis even interferes with my IVF treatments. For my first round of IVF, not a single embryo was healthy enough to implant.
"For my second round of IVF, I had to undergo surgery to
drain a cyst so large that it took up nearly the entire ultrasound screen. My situation is severe, of course, but had I known how badly the surgeries would scar me and how difficult conceiving would be because of it, I think I would've made different choices earlier in life." Melanie, 42
"I was diagnosed because during one bad cycle, I passed out and missed my bed, hit my head on a bedside cabinet and knocked myself unconscious. The hospital consultant told me he suspected endometriosis and they operated a week later, removing Stage IV endometriosis and fitting a Mirena [IUD] coil.
"I do have growths elsewhere, so when it's my cycle I
often get nose bleeds, pressure headaches and sensations of heaviness in my chest that mean it can be difficult to breathe. I also suffer from anemia on bleeding days and have to take iron and a high-iron diet, otherwise I faint." Meghan, 28
"Before my excision surgery in 2015 I had unbearable pelvic pain 24/7 that got worse during my period. I also had sciatic pain,
ruptured endometriomas [cysts in the ovaries], chronic bloating, fatigue, hormonal imbalances, heavy bleeding, anxiety, premenstrual dysphoric disorder (PMDD), and more. I passed out during bowel movements and when my pain was too severe.
"After the surgery, my symptoms as an endometriosis patient immensely subsided. However, I do continue to have symptoms that are indirectly to endometriosis, including hormonal imbalances and PMDD, so I take natural hormonal supplements to elevate my estradiol and progesterone levels."
"I have endometriosis and went through a hysterectomy a year and two months ago because of it. I had pain all the time, low grade to intense, in my lower left corner of my abdomen near where my
adhesions [scar tissue left by uterine cells outside the uterus] were, and also where they found implants on my colon.
"I had terrible periods; I had to go on birth control as soon as I started menstruating because the pain, nausea, diarrhea, swelling, and emotional problems were so bad. I also experienced pain with intercourse, with a pulling or tugging sensation. I found out after my laparoscopy that was because [the endometriosis] had left adhesions to my pelvic side wall."
"I got my period when I was 8, and immediately I was in the doctor's office. I always thought thick black or purple blood was normal; I didn't know until 2019 that that black blood was my uterine wall lining, and that the bloody goo and slime was actually endometriosis. I always felt like I was being stabbed in and around the uterus, hundreds of times a minute. Sometimes it felt like a blow torch was inside of me.
"I had extreme lower back pain leading up to my periods, during my period, and post period. It was sending radiating shooting pain through my body. I asked my mom to go on birth control at 15, but it did not help the pain at all. It also did not help my cycle.
"You're told your period is every 28 days, especially on birth control, yet mine would be for weeks on end. Literally. The
longest stretch I've had for my period was six weeks.
"In 2008 there was a period of time that I could not keep food in at all. I would eat and the food would be out of my system within 10 minutes. I went from this extreme diarrhea to constipation for weeks on end. It was a brutal cycle. My colon was twisted and attached to my small intestine — which contributed to my highly irregular bowel movements. I was also nauseous for no reason."
"The majority of my symptoms boil down to incredible sharp, stabbing cramps. The cramps can come at any time, but they are the worst when I'm on my period. When I have them, it literally feels like my vagina is being carved or scraped from the inside out.
"On top of the cramps, I get very faint and dizzy. Because of how sharp my cramps are, my body gets absolutely fatigued from managing the pain and sometimes I pass out. And on top of it all,
sex can feel very painful. As I have sex, it sometimes can feel like I'm going through a gynecological exam, being probed around uncomfortably rather than enjoying myself. It's very frustrating.
"Outside of physical symptoms, I also experience heavy mood swings due to the amount of medication I am on for my endometriosis. While the mood swings aren't a direct effect from the condition, they are an effect of the treatment I use to manage it."
"When I first started experiencing endo pain I was in high school and honestly, I just thought that's how periods were. I would get heat flashes, start sweating, and within minutes feel stabbing pain in my lower abdomen and back. I would actually
miss days of school each month because the pain was so severe I could hardly walk. Through college, it just got worse.
"The pain was so excruciating I could hardly stand up straight, let alone walk. It often felt like I was being punched by the Hulk over and over and over again for hours on end. Bowel movements, sex, and being on my period would all brings me to cursing, howling, and tears because the pain was so intense. Endo caused me to be fatigued, mentally drained, emotionally exhausted, and fall into mild bouts of depression."
"What does it feel like? My quick answer is a jackhammer. But it also encompasses so many other sensations, like the desire to be in the fetal position permanently. Or like you're going to involuntarily lose control of your bodily fluids because the pain is emanating throughout all of your lower organs.
"To truly know the pain of endometriosis, people need to know what it feels like to have your body look different than you're used to almost two weeks out of every month — because for many the pain isn't just during their cycle, it's also during ovulation. Endo can also make you jump awkwardly out of your seat due to periods of
sharp pain emanating from behind your tailbone. Strange looks often follow." Expert: Dr. Felice Gersh M.D., OB-GYN at Integrative Medical Group Studies cited: Peterson, C. M., Johnstone, E. B., Hammoud, A. O., Stanford, J. B., Varner, M. W., Kennedy, A., Chen, Z., Sun, L., Fujimoto, V. Y., Hediger, M. L., Buck Louis, G. M., & ENDO Study Working Group (2013). Risk factors associated with endometriosis: importance of study population for characterizing disease in the ENDO Study. American journal of obstetrics and gynecology, 208(6), 451.e1–451.e4511. https://doi.org/10.1016/j.ajog.2013.02.040