19 Ways Endometriosis Is More Than 'Just a Bad Period'

When women with endometriosis (a condition in which tissue similar to the lining of the uterus grows elsewhere in the body) talk about their painful, life-altering symptoms, they’re often brushed off with comments like, “You’re just having a bad period” or “Everyone gets cramps during that time of the month.” But as the estimated 176 million women worldwide who have endometriosis know, the condition can affect you every day, not just once a month, and the pain it causes is far beyond that of a “normal period.”

The fact that endometriosis takes an average of 10 years to diagnose shows how misunderstood (and stigmatized) this chronic illness still is. As Endometriosis Awareness Month kicks off on March 1, we partnered with Endo Warriors to ask our communities to explain the way endometriosis is more than “just a bad period.” It’s a serious condition that deserves more awareness, research and support.

Here’s what they shared with us:

1. “It’s not just once a month, it’s every day. And it’s not just the horrible Jaws-eating-its-way-out-of-you pain. It’s all the emotional turmoil it puts you through. The worry that is that just a random pain or is it spreading. And knowing that surgery is the only way to find out.”

2. “It’s not being able to talk about the severity of your symptoms because of the stigma and ‘yuckiness’ around menstrual cycles. It was never embarrassing to say my hip problems make it hurt to walk but to say periods, pooping, urinating, sex, sitting, etc… hurt? That’s a whole lot more private and uncomfortable.”

3. “The pain is also different than period cramps and can be in the hips, back, shoulders, sides (instead of midline uterine cramping), etc… Endometriosis also has a host of other symptoms like fatigue, brain fog, GI upset (constipation and/or diarrhea), nausea, problems breathing, infertility, etc… as well as comorbid diseases (adenomyosis, interstitial cystitis, PFD…). Medical treatments can also have a host of terrible side effects.”

4. “It’s the many times I have spent entire days in the fetal position glued to my heating pad. Or the times I couldn’t stand up straight because of the pain and not being able to lay on my stomach for the same reason.”

5. “It’s not a ‘monthly distraction and inconvenience,’ it’s often downplayed to be. It can be devastating, agonizing, and cruel.”

6. “It’s more than ‘just a bad period.’ It’s just another day where I have to give myself a pep talk to just get out of bed through the pain. It’s just another year that goes by where I’ve tried to have a baby and can’t conceive. It’s just another comment from a person saying ‘you’re always sick’ or ‘you don’t look sick’ when you thought you were doing a good job of being a productive member of society and working through all these different challenges.

7. “For me it has little to do with my period. Instead it’s every day. It, and the scarring from repeated surgeries, stick my organs together. At my last surgery my lower left organs — including my colon — was stuck together in a ball and that ball was stuck to my abdominal wall. I couldn’t eat normally without severe pain and discomfort. My body and life will never be the same because of endometriosis.”

8. “It has meant that I can’t have children, that I don’t know if I’ll ever enjoy a ‘love life’ again, that I am in daily pain and have problems with my bowels that cause me great discomfort and this is after three surgeries. It is also almost a taboo subject, an invisible illness that’s as invisible to most doctors, as it is to most other people so I can feel so alone with little support.”

9. “I bleed for two months or longer with maybe a week and a half of total breakage in between. The pain is daily. The endo belly is horrible and my clothes all fit different. The fatigue is awful. There’s so much more. You don’t get it unless you get it.”

10. “It feels like my uterus twists in the most odd positions and is making knots on itself. Sometimes I can’t stand, and I automatically do breathing exercises as if I were in labor. It also feels like I have the flu because I take so many painkillers.”

11. “A ‘bad period’ shouldn’t last eight months and need to be surgically stopped. A ‘bad period’ doesn’t cause me to be nauseous every time I eat or make it so that when I am able to and finally feel up to having sex with my husband that I have to take pain medication before I do and plan on being in bed sick half the next day.”

12. “Nausea, vomiting, dizziness, having to take time off work and school, having to miss important events.”

13. “A normal period doesn’t have you doubled over, crying, and sick to your stomach from pain. A normal period doesn’t affect your other organs. It doesn’t cause bowel blockages or extremely painful bowel movements. A normal period doesn’t hit you harder than a flu. It doesn’t cause you to miss work or social engagements. A normal period doesn’t completely take over your life.”

14. “It doesn’t just happen over a few days like a ‘bad period.’ It continues after and before and during. Pain that flares up without a period in site, difficulty using the restroom on a regular basis, and infertility.”

15. “Intense lower back pain, scar tissue covering my uterus and tubes, causing infertility, constant nausea and painful urination, and fatigue. I’m on a 24/7 birth control, so I don’t even get periods anymore, but I still experience all of these symptoms on a regular basis.”

16. “Endometriosis is so much more than bad periods. For me, endometriosis means leaving blood stains on people car seats and chairs . It’s require me to carry a change of clothes in case my flow becomes uncontrollable and a plastic bag to sit on (or vomit into when necessary) I keep adult diapers and have been on my period more days than not over the past three years.”

17. “Try feeling like you have broken glass in your pelvis for months…”

18. “Endometriosis is ‘cramps’ that feel like someone is chainsawing your insides. It is never wearing any color other than black, just in case your body decides to suddenly spring a red colored geyser. It is cancelled plans. And lost friendships. It is never leaving home unprepared, never being spontaneous, never swimming in public. It is taking birth control pills, even after you have had a total hysterectomy (which leaves ovaries). It is hell.”

19. “Shooting pains in my lower back, abdomen, and anus. Sometimes I cannot even put myself into a comfortable position and have to down ibuprofen like candy.”

How is endometriosis more than “just a bad period?” Share in the comments below.

Thinkstock photo by utkamandarinka