March is Endometriosis Awareness month and while the disease affects an estimated 200 million women worldwide like myself, and was one of the most-Googled health search terms of 2018, endometriosis symptoms are often missed or ignored. And there’s good reason why this occurs.
But first, let me dispel a pervasive and damaging myth about endometriosis: It’s not that women are scared or embarrassed to share these symptoms or confide in their doctors. The problem is that many of us still don’t know what the possible signs of endometriosis are. Had I known my debilitating cramps and chronic pelvic pain were an indication of something more serious than just an unfortunate menstrual cycle, I would have brought these concerns directly to my OB-GYN.
Many endometriosis symptoms have been normalized by our culture, hovering under the golf-sized umbrella with the label “female problems.” The injustice in this is that when the invisible illness is diagnosed and managed earlier, women have better options and better help managing their pain. Even though there is no known cause or cure, a diagnosis is critical in creating a care plan with your doctor to help mitigate these symptoms and puts an end to the question, what on earth is wrong with me?
As a longtime endo suffer diagnosed in my 20s, I’ve learned that not all patients experience the same symptoms. I have pelvic pain throughout my cycle, extreme menstrual cramps and bloating, chronic fatigue, shooting pain in my thighs and pain with sex. As adhesions continued to grow, my symptoms often changed.
These days, my endometriosis bloat game is so strong, I’ve had to leave restaurants in the middle of a meal, fully recline in the backseat of a car (sorry, Uber drivers) and retreat to my bed once I get home. I have two wardrobes: one for “normal” days and one for flare-ups consisting of sweatpants, pants one size larger than my normal size, loose-fitting dresses, long sweaters and t-shirts. And don’t get me started on crop tops and low-rise pants — neither one of those trends will ever hang in my closet.
According to The Endometriosis Foundation of America and The Endometriosis Association of America, the following potential signs of endometriosis should not be shrugged off as typical female pain. While no one symptom can confirm a diagnosis, if you are suffering from any, some, or all of these issues, make an appointment with your OB-GYN stat. Being informed and advocating for our health is one of the greatest gifts we can give ourselves and the other women we love.
Debilitating menstrual cramps
“One of the warning signs of endometriosis are menstrual cramps,” Dr. Alyse Kelly-Jones, OB-GYN at Novant Health Mintview in Charlotte, North Carolina, tells SheKnows. “Not the mild kind that you can take some medication and power through, but the kind that knocks you off your feet, puts you in bed for days each month and really messes with your mojo. And this happens every month.”
If you are missing work or hiding under your desk wishing you were at home snuggled up with a unicorn hottie (one of the cuter heating pads on the market), it’s time to talk to a professional.
Pain with sex (dyspareunia)
For me, this symptom is the one of the biggest kicks in the uterus. While you can conceivably control pain while having sex by limiting how often you have it, dyspareunia compromises intimacy with our partners, trying to conceive, and well, our libido.
“Endometriosis can grow anywhere in a woman’s pelvic region. When a woman is sexually active and experiences pain, especially with deep-thrusting, she needs to think about endometriosis,” Dr. Kelly-Jones says. “If it just happens occasionally, that can mean your partner is running into your cervix or ovaries. But if it happens routinely, that can mean that endometriosis has spread to the lining of the pelvis and the deep-thrusting is irritating this lining and causing pain.”
Pelvic pain between periods (dysmenorrhea)
For some endo sufferers, pelvic pain between cycles feels like one long period that never ends. The bleeding ceases, but dysmenorrhea’s searing cramps are ever-present. I often describe it as knife-stabbing pain, but one endo friend tweeted this disturbing-yet-accurate nightmare:
— Melissa (@xMelissaR04) October 30, 2018
No woman enjoys getting her period (I think?), but it’s typically over in five to seven days. For endo women, our periods check in for an extended stay like that house guest who never leaves.
According to The Endometriosis Foundation of America, women with endometriosis may suffer from heavy bleeding and periods extending beyond seven days. If you are still consistently avoiding white pants after a full week, start tracking your cycle and share your calendar with your doctor.
Let’s face it: we’re multitasking, driven women who are all sleep-deprived. We dream of dreaming. A lot. However, if you are still tired when you manage to count a reasonable amount of sheep or are desperate for naps and early bedtimes, something else may be amiss. Dr. Brian Levine, OB-GYN at the CCRM Fertility in New York City, tells SheKnows, “chronic pain can lead to disruption of normal sleep patterns and to feelings of chronic stress and discomfort.”
Pain in the lower back, abdomen, or groin
As a teenager, I suffered from massive lower back pain during my period. Having no way of knowing this was not a normal symptom, my stepmother assured me it would get better. And in a way, her prediction was correct, except the pain migrated to my abdomen and inner thighs.
Sometimes the pain is sharp, other times it’s similar to the dull ache you experience post-ab workout. Dr. Levine explains why: “The nerves associated with the deep pelvis overlap with the nerves of the lower-back, abdomen, groin, and lower extremities. Extreme inflammation and irritation can lead to chronic pain of these associated structures.”
Do a hashtag search on #endobloat and you’ll find a wide spectrum of women sharing photos of their wildly uncomfortable distended stomachs accompanied by #notpregnant, #spoonie and #endosucks. In my experience, the difference between normal bloating from a meal that was totally worth the bump and endo bloat is the skin on my stomach is so tight you could use it as a trampoline.
Dr. Sherry Ross, OB-GYN at Providence Saint John’s Health Center, Santa Monica, CA, gets this. “Painful abdominal bloating is a horrifying symptom of endometriosis,” she tells SheKnows. “Endometrial implants can be scattered throughout the bowels causing them to function abnormally creating uncomfortable bloating.”
Painful bowel or urinary disorders
Endo women spend a lot of time in the bathroom and it’s not to achieve the perfect beach waves. “Because endometriosis can spread to all of the other organs in the abdomen, the bowel, the bladder, the lining of the abdomen, a woman can begin to experience pain with bowel movements and pain with urinating,” Dr. Kelly-Jones says. “Oftentimes, a patient will use the descriptor ‘knife-like’ or ‘searing’ or ‘cutting’. If I hear these words, I am on the lookout for endometriosis.”
The medical community says this is is a rare one — on my own journey to an endometriosis diagnosis I was told there was no way my chest pain was associated with endometriosis. But according to Dr. Ross, “less commonly [than other locations] endometrial implants can occur in the chest cavity.”
After countless visits to gastroenterologists (because I thought maybe I was dealing with acid reflux) and OB-GYNs who swore the stabbing pain the middle of my chest was in no way related to my endometriosis, I ended up in the emergency room where an on-call doctor finally agreed it could be yet another endo symptom.
“Endometrial implants can appear on ligaments, nerves which can lead to chest pain especially around your period. Coughing blood is another very rare symptoms caused by endometrial implants in the chest area,” Dr. Ross says.
A version of this story was previously published in March 2019.
Have endometriosis? Click here for 13 products other women with endo swear by to cope with these symptoms.