Guys, learn how to support a partner with endometriosis in this Q&A from Style Girlfriend!
March was Endometriosis Awareness Month, which made me realize there’s a lot I don’t know about this disorder that affects more than 6.5 million women in the United States alone.
When I dug into the topic, I found that not only do women have trouble getting diagnosed (women’s pain is generally taken less seriously than men’s pain by medical professionals…not great!), it’s also often misunderstood by those around them. Including their partners.
So, I asked Style Girlfriend contributor Caroline Reilly, who’s been open about her struggle with endometriosis to share some insight.
Below, learn how to support a partner with endometriosis:
“In a ‘Marisa Tomei proving her expert witness bona fides in My Cousin Vinny‘ way, can you explain what endometriosis is, and how it affects sufferers?”
I’m a writer with a JD, and a neurotic slut who spends most of my free time watching foreign procedurals and playing with my dog. I also have endometriosis.
“What is endometriosis?”
Endometriosis is a chronic health condition where tissue that’s similar to the tissue that lines the uterus (but not the same!!) grows elsewhere in the body.
The disease attaches to organs and tissue in the body where it shouldn’t be.
Think about it kind of like a benign cancer. Growths grow in the body and can case chronic pain, fatigue, organ dysfunction and infertility — though not everyone will have all those symptoms.
Endometriosis affects everyone differently. The most common endo symptom is painful periods, but it’s not just bad cramps. It’s…excruciating.
Some say it’s as bad as childbirth. Other ways people commonly describe endo pain is as a burning, or like your organs are wrapped in barbed wire.
For many people with endo, the pain is not confined to that time of the month. Plenty of people with endo experience pain all month long.
Sometimes it ebbs and flows with your cycle—ovulation etc—but in plenty of cases it’s pretty nonstop.
People with endo often go through flares — periods of times, sometimes days or weeks where their pain gets worse. Sometimes this might be triggered by their cycle, but honestly sometimes this disease seems like it has a mind of its own.
Endo is also pretty much a whole body disease. It’s most commonly thought of a reproductive disease, but lesions can show up pretty much anywhere in the body, including the lungs and brain.
“How does gender affect diagnosis and treatment of endometriosis?”
…And what might surprise men to know about the differences between how men and women receive care?
Endometriosis care is…pretty abysmal.
The gold standard in care is something called excision surgery, where the growths are cut out at the root, as opposed to ablated (burned, essentially) which treats the superficial disease but leaves the nastiest parts of it to continue to grow under the surface.
Think about endo like a weed: ablation surgery burns the leaves, excision pulls out the roots. And while there is not cure for endo, there is a much much lower chance of recurrence with excision.
The only problem is it’s basically inaccessible to most people. It can cost upwards of $10,000 out of pocket, and only a handful of doctors nationwide are skilled enough to perform it.
Which means unless you’ve got some serious liquid cash to travel and pay for a surgery without insurance, you’re not going to have access to the best care.
And a lot of this has to do with medical misogyny.
Basically, if you’re assigned female at birth, you spend a lifetime having doctors downplay your pain and telling you it’s all in your head.
This medical gaslighting is why it takes almost *a decade* on average for endometriosis to be diagnosed — and that number is even higher for endometriosis patients of color who have both medical misogyny AND medical racism to contend with as they seek care.
And medical misogyny is a widely observed phenomenon; women and people of color report longer wait times in emergency rooms and poor access to pain management.
So it tracks that endo — a disease that affects one in ten people assigned female at birth — is sort of a cluster of all the worst medicine has to offer…racism, misogyny, classism.
It’s also important to point out that while disparities in care are tied to medical misogyny, it’s not just women who get endo. Trans men and nonbinary folks also can have it, and in very rare cases it’s been found in cis men.
“What advice do you have for our readers in relationships with an endo sufferer?”
Oh boy, this is a tough one. I’ve had a lot of shitty relationships where I felt like my endo was kind of a wrench in things — not because it actually limited anything I could do, but because my partner wasn’t empathetic
And so, I think the number one most important thing is to practice radical empathy.
Not in like, a “feel sorry for you” kind of way, but in a “how can I support you and make you feel safe and taken care of,” way.
I think the best way to achieve this is to listen to your partner with endometriosis and learn about the disorder.
Understand as best you can what their symptoms feel like and how they view the disease in their life. We are more than our illness, but it’s unavoidable that it’s a big part of our lives.
Avoid phrases like “I know what you’re going through.” Or, “It could be worse.” Anything that might make your partner seem like you’re minimizing what they’re going through.
Even if your comments might be well meaning, the truth is you can’t really understand what they’re feeling, and any remarks that make them feel like what they’re going through isn’t that bad aren’t comforting–they’re gaslighting.
Communicate with your partner about what their needs are during a pain flare, and then when it happens — try as best you can to support them.
Little things like making the bed, taking the dog out, preparing dinner or doing the dishes without being asked can make a huge difference in how someone feels.
If your partner likes to curl up on the couch and watch TV all day when they’re experiencing pain, put out some comfy pillows or bring their favorite blanket over to them.
Having to constantly ask for help as a chronically ill person can be exhausting and really fraught, so for a partner to anticipate what you might need can be a huge load off.
Finally, for a lot of people, endo can cause painful penetrative sex.
But anyone worth their weight in oral knows that penetration is hardly the only way to get off, so if your partner with endometriosis is someone who doesn’t enjoy penetration, make sure to embrace and affirm that you can still have a full and exciting sex life without it.
Because chances are they feel some shame about not being able to do that (thanks, society!).
Whether or not your partner is chronically ill, you should be investing in figuring out the unique ways their body likes to get off, and it’s really no different with a partner with endometriosis.
For example, I typically can enjoy penetrative sex, but I almost always need my partner go down on me first. It is a) my favorite thing in the world, and b) it helps me get aroused enough that penetration is not painful.
“And professionally, what advice would you offer to a reader who works with/for, or manages a woman dealing with endometriosis?”
One word: accommodations. I cannot tell you how many jobs I would have been able to enjoy if I had had the option of remote work, even a few days a week.
And there’s this really judgmental and frankly ableist connotation to working from home that it’s lazy or that you don’t get as much work done. But speaking as someone with a chronic illness, I am always 100000% more productive when I am comfortably at home than after I’ve commuted—in pain—to sit at a desk in pain only to commute home—in pain again—and start it all over again the next day.
If you’re a boss and you want to make your workplace as inclusive as possible, be proactive and discuss WFH and accommodation options with new employees.
And it should go without saying, but do this without asking any invasive questions about what they might need.
I would honestly just open it up as a conversation, like “Here’s the coffee machine, here’s where the extra highlighters are, and also if you need any work accommodations like WFH, we can offer that flexibility.”
If you’re a coworker to someone living with endometriosis, recognize that that person’s work schedule or workflow might look a little different than yours, but that doesn’t mean they’re not working as hard as you.
Chances are they’re working as hard or harder because chronic illness is, in and of itself, a full time job.
If you’re close with a co-worker who has endo and they share with you that they’re in a flare, it can be considerate to ask if there’s anything you can help with or take off their plate.
Be kind and remember that someone with endometriosis is living with a sometimes daily pain that would cause most people to call out of work and crawl into bed. The level of feeling shitty that might cause you to call out is probably closer to their baseline.
And just because they have it all the time, doesn’t make it any easier. You learn to adapt, but you never get used to being in this much pain, so remember that when a coworker calls out sick or asks for an extension.