May 8, 2018
This blog is part of a series – to read the intro, click here!
If you’re anything like me, the first thing you want to know about a disease or illness is, “what are the symptoms?” Like any disease, endometriosis has many different symptoms and everyone’s experience is unique. A particularly tricky part of endo is that some women have no symptoms at all while others have debilitating pain year round. An even trickier tidbit about endo is that the severity of pain is not related to the severity of the disease! One woman can have Stage IV endo and not feel a thing while a woman with Stage I endo can live in constant suffering. It is quite baffling.
This is important to understand for your own diagnosis and when talking to someone who is struggling with the disease. (Free Friend Tip: Don’t say “oh, my roommate had endo – it’s not that bad.”)
Common Endo Symptoms:
-Coughing up blood (found in cases of the lungs)
If you are experiencing several of these symptoms, talk to your doctor about the possibility of endometriosis. If they shrug it off, find another doctor. Remember, cramps are normal, but pain to the point that you can’t function is NEVER normal and should not be ignored.
The most common question I get about endo is “what are your symptoms?” I’ve always been pretty vague on social media when talking about how I feel, and even my friends just hear me say “I’m having a bad endo day.” Some of this stuff is pretty awkward to admit on the world wide web, but it’s a sacrifice I’m willing to make if it helps someone. And I hope it gives you permission to be brave in talking about your own symptoms as well!
I began having super painful periods in college, but never really thought much about it. My life was so busy and hectic then that I somehow managed to just plow through bad days. My periods weren’t super regular and didn’t have consistent symptoms, so there were so many times that I was caught off guard by the sudden onset of pain. I had a job at an office about a mile away from my parking lot, and I can’t count the number of times I got stuck at work, curled up under my desk calling people to pick me up. Or laying on the floor of the stage while coaching a dance team. Or laying in the bar tar at a friend’s bachelorette party, praying for last call so we could go to the hotel. I can remember white knuckling my steering wheel when driving on these days. And so so so many nights sleeping in the bathtub.
Newsflash, y’all. This. is. not. normal. I heard other girls complain of cramps, so I just assumed that this is what they meant, and they were miraculously always at home to deal with it in a more private and dignified way.
Myth: Painful periods are normal.
After a few years the pain in my lower abdomen, back, pelvis, and ovaries became more consistent and predictable, and that’s when the other symptoms started to show up as well. My GI track became a mess and I realized that I was getting period cramps every time I used the bathroom – even if I wasn’t on my period. I learned to give myself a 30 minute window to recover from every bathroom break. The crazy endo bloat also made it’s entrance around this time. We’re talking randomly looking 5-6 months pregnant over the course of an hour. Sweatshirts and yoga pants are wonderful things, friends. Exercise also became a strong pain trigger, and any amount of running or even heavy walking would leave me curled up on the sidewalk, making it difficult to maintain any kind of consistent exercise regime.
I discovered the more secret and surprising reality of endo when Evan and I got married in 2015. I’d been warned by my married friends not to get my hopes up for a fairytale wedding night. But the honeymoon went by…and the first month…then the first year…and sex was still painful for me. I remember friends being sympathetic but unable to relate. Even worse, I told an ob/gyn once and she looked at me like I was crazy. I was so embarrassed that I burst into tears and left the office and didn’t mention it again.
[If you’re reading this and nodding your head, I want you to know that you’re not alone and it’s not your fault. It’s not mental and a glass of wine will not fix it. There are lots of physical causes for painful sex, endo-related and otherwise, and in most cases there is treatment available!]
The final and perhaps most limiting symptom was chronic fatigue. This affected my life more than all the other symptoms put together for a while. I went from having a seemingly-superhuman ability to go days without sleep to sleeping 12+ hours a night and still needing several naps a day. I was fortunate at this point to be self-employed because I genuinely wonder how I would have managed a 9-5 that year. Every time I mentioned it to doctors, I would get an “understanding” nod and another thyroid check, followed by a shrug and dismissal when it came back normal. Again. I wanted to yell at them until they believed me and stopped telling me “welcome to adulthood.” I’m pretty sure adulthood isn’t sitting on a bench outside Target, in tears because you’re too tired to walk to your car. But I’ve been wrong before.
The pain only got worse until I could not physically stand up or sleep through the night for the entire week of my period. During the worst of days, I would max out my oxycodone and ibuprofen, wrap myself in heating pads, and lay in bed shaking, biting a pillow, and praying for relief. These are the moments that nobody but Evan has ever seen, and the moments when endo patients truly feel like there is no hope.
I paint this picture for you so that you understand what we mean by “pain”. This is coming from a girl who once ignored appendicitis for several weeks until it ruptured – because I was training for track tryouts. Who’s broken bones, and suffered through shingles without missing a beat. I’m not a wimp and very few women really are. The hardest and loneliest obstacle in dealing with endo is getting your doctor and even your friends and family to believe you when you tell them you’re in pain.
All of these symptoms came to a head for me in 2016 and 2017 – I carried heating pads around with me every where I went and learned where all the outlets were at my friends’ houses. I obsessed over my calendar and period app before making obligations, cancelled countless plans, and spent 5-7 days in bed every single month. Even my husband began taking days off work each month to stay at home and take care of me. I truly felt like my life was at the mercy of my cycle and it was such a stressful and frustrating way to live.
This all seems so dramatic, especially since I have friends and family who have fought to survive much worse. But no one is helped when we glaze over or keep our experiences to ourselves – the world will not change for endometriosis patients until we all begin speaking up and telling the truth about how much this disease impacts our daily lives.
If my story resonates with you, or you think you may have endo based on these symptoms or my story, please keep reading. I knew that something had to change, and I became aggressive in finding relief – and the first step towards that was my official diagnosis, which I will talk about next week in Part Two!
Want to talk endo? I love to hear and share stories with my fellow endo-sisters! Leave a comment or email me at firstname.lastname@example.org! You can also follow me on Instagram @jennahuckabysimmons.