When I was raising money for the Endometriosis Foundation of America during my training for the NYC Marathon, I started to get paranoid.
It’s never fun to ask people for money, even though it wasn’t going to go in my bank account. I started to wonder if my training for the marathon made it seem like having endo was no big deal. For people who don’t know me or another endo sister that well, they might not know what it means to have endo, because like many chronic illnesses, it is invisible.
In other words, if I broke my ankle and was walking around on crutches, any random stranger would be able to see that I was (literally) hobbled by an injury. But if I’m having killer cramps, or it feels like my ovary and fallopian tube is being tied into a knot, you can’t tell that by looking at me (unless you know my “I’m in pain” face intimately).
This blog is in a large part about making endo more “visible” for people who aren’t as well acquainted with it. In that vein, today I am writing about all the things I started doing in the last couple years (aside from surgery and painkillers) to try to manage my endo symptoms, preempt the pain, and reduce it when I do have a flareup.
Not everyone who has endo experiences debilitating symptoms, but many do. And if you see one of us out and about doing well or one of us succeeding in life, what you don’t see is how much extra work it takes just to function. It takes a LOT of time, effort, and mental energy. Like many chronic illnesses, managing my endo is a full-time job, and I think about it constantly, so this post is here to shed some light on just how many little things I do day in and day out to make life more liveable. And if YOU are one of my fellow endo warriors, and you already know all this, maybe you can try some of these methods too.
One of the very first things I started doing for my endo outside of surgery and prescription painkillers was acupuncture, and it’s genuinely one of the best decisions I ever made. I found an amazing acupuncturist who specializes in women’s reproductive health, and at my sickest in 2015, I went once a week. My insurance did not cover it then (post on the endo money pit to come!), but nothing was more soothing to me than when, before leaving the room, my acupuncturist said to me “Your only job now is to rest.” In addition to helping with the endo, my acupuncture sessions have addressed rock-bottom emotional times, two marathon recoveries, and the 2016 election. Now I go monthly. (I will go twice a month if/when I hit my insurance deductible.)
Before my second surgery, my specialist recommended pelvic floor therapy (another series of posts awaits because I know many people are curious). This has been another game-changer for me. When I started, I was going every few weeks; now I go every six weeks. But if you’ve ever been in PT, you know it generally comes with homework. And for me that means:
I do a set of hip and leg stretches (almost) every day.
For a while, I was using a dilator daily as well.
If you ever see my pill organizer when I’m traveling, you might think I take a fuck ton of meds. But I only take one daily medication. The rest of those pills are supplements and vitamins. Every day I take a probiotic for gut health; a women’s multivitamin for, well, everything; magnesium to relax my muscles and ease cramps; fish oil to reduce inflammation; calcium to cut back on PMDD symptoms and reduce the risk of osteoporosis (I hate milk and bleed out a lot of calcium every month); and vitamin C because chronic pain and fatigue can take a toll on one’s immune system.
I started eating an antiinflammatory diet. This isn’t as hard as it sounds; in fact, it’s pretty intuitive. All you have to do is cut out the shit you already know is bad for you — alcohol, refined sugar, processed foods. Additionally, I avoid soy, which has estrogenic effects (not great for an estrogen-dominant disease like endo). Right now, I am in an 80/20 place with it; I eat pretty well on week days and if I go out on the weekends, I am a little more lax. Lately, due to the holidays, antiinflammatory eating has meant experimenting with some healthy cookie recipes (vegan, gluten-free, no refined sugar). It has been an almond flour roller coaster, as I am sure my boyfriend can attest.
Antiinflammatory eating and avoiding hormone disrupters means expensive organic food is also regularly taking a toll on my wallet.
Inspired by WomanCode, I cycle sync. I track the four different phases of my cycle, and depending on which phase I am in, I fill up on certain foods, decide whether or not to make plans with friends, and choose which types of workouts I will do accordingly.
I seed cycle. During my menstrual and follicular phases I try to get ground flaxseed and pumpkin seeds into my food once a day. During my ovulatory and luteal phases, it’s sesame and sunflower seeds. The nutritional benefits of these seeds support the different types of hormone shifts that are supposed to be happening during these phases.
I’ve been tossing out all my bath, body, and home products, and replacing them with all-natural ones, hence the charcoal toothpaste you see above. OK, TBH, charcoal is not necessary for all-natural toothpaste, but it is fun to brush your teeth and then smile at your partner before rinsing. And it is true that many toothpastes, soaps, shampoos, laundry detergents, deodorants, are full of garbage like metals, sulfates, phthalates, and more. While I don’t believe that every little thing will give you cancer, I do believe these chemicals wreak havoc on your hormones, so THEY GONE.
I started dry brushing to help support my circulation and therefore help my body eliminate excess hormones and toxins more efficiently. For a while I was doing this daily, then I got lazy. Back at it in 2019!
Recommended by my massage therapist, I started using castor oil packs for 30-45 minutes or so before bed — a thin layer of castor oil on my abdomen, four layers of flannel, and a heating pad or hot water bottle (perhaps even a cat) on top — four days on, a day or two off. This should help reduce inflammation, loosen scar tissue from my surgeries, aid digestion, and help my body cleanse itself more efficiently during menstruation. Also, it feels good.
Speaking of my MT and feeling good, when I was training for the marathon, I began going to massage therapy regularly. My MT also specializes in women’s reproductive health and is brilliant at somehow knowing exactly what I need.
I drink a fuck ton of water. I always feel worse when I don’t, and dehydration worsens cramps and slows digestion.
I am really rigid about getting AT LEAST seven hours of sleep a night. I’d really prefer eight or more.
I take Epsom salt baths regularly. Not only are these super relaxing, the magnesium in the salt relaxes muscles and therefore helps ease cramps, and stress reduction goes a LONG way in battling endo flares.
I’m not currently in therapy, but I certainly go back for refreshers when life is tough and the burden of endo is just too much on top of it all. Ain’t no shame in that game.
I spend a lot of time with friends and family because that almost always rejuvenates me.
I also spend a lot of time away from friends and family because during certain parts of my cycle (HELLO LUTEAL PHASE AND PMDD), I really need quiet, alone time because that also rejuvenates me.
I go to yoga once a week; I wish I had time to go more. Mind-body activities help reduce stress and stretching my body makes everything better. Plus, my favorite is hot yoga, and sweating is another great way to eliminate excess hormones and toxins.
Which is also one reason why I do some form of exercise almost every day (except for rest days or high-pain days). It’s great to sweat, and exercise is a prime stress reduction technique for me, whether it’s running, lifting, spin, or kickboxing.
Speaking of stress reduction, I’ve got a pretty great meditation practice going these days.
Therapy is great and so are antidepressants/antianxiety meds if you need them. My gyno prescribed Prozac for me years ago because it is proven to help with PMDD symptoms, which at the time for me, included crushing depression in the days leading up to my period. It also lifted a cloud of social anxiety that I hadn’t even realize had settled over me during college, and although I am on a different medication now, these drugs have been integral in helping me cope with the trauma of different diagnoses, surgeries, and treatment (or lack thereof).
I drink a fuck ton of kombucha and other fermented snacks because good gut health is key to all health, and certainly reproductive health. Did you know serotonin lives in your intestine? Yeah, so if your microbiome is off, your mood probably is too.
I track my period every day…with three different apps. The more information I have about my body, the better.
And finally, pain management takes up a lot of time, especially if you, like me, are trying to avoid taking copious amounts of prescription painkillers or even NSAIDs. So if ALL of the above techniques do not do enough to prevent my pain, when I do have a flareup, I’ve tried the following nonpharma methods:
Tiger balm for muscle pain. Love smelling like a walking jar of Vick’s VapoRub.
A TENS unit to shock my central nervous system into submission.
Clary sage essential oil has antispasmodic and anticonvulsant properties which helps ease a uterus that feels like it’s in a vice.
Topical CBD oil salve has helped a ton with back pain and taking the edge off of cramps.
And of course, my trusty old heating pad, which I once used so much that I toasted my legs. No really.
Did you know endo took this much time, energy, thought, effort? If you’re an endo sister, what methods do you use to, you know, function?