self-care — Endo + Chronic Illness

Welp, March 2020 came and went, and all the Endometriosis Awareness Month content I had planned went with it. COVID-19 stole our goddamn thunder.

All joking aside, this is NOT a fun time. We’re all worried about loved ones getting sick and I’m horrified by the prospect so many of my friends are facing of having no income as so many businesses have shut down around us to try to curb the spread of this horrible virus. Scott and I are officially planning a backup wedding in case ours can’t happen as planned, and our March birthdays were…well…weird.

Another side effect of a pandemic? The worst period I’ve had in ages. Does this feel biblical to you? Because my period sure as shit felt biblical to me. It’s Passover now, and my uterus was like “COVID, you bring the plague, I’ll bring the blood!”

So this seemed like the right time to put together a post I’ve had in my head for ages — one on managing endometriosis at home because, at least if you’re in the States right now, you’re going nowhere.

But this is also a post meant to be referenced in what is hopefully the not-too-distant future when people want to know about at-home remedies just because. The reality is, I am often asked about how to manage endo without medications or surgery, so here’s an EXTENSIVE list of different things I’ve tried that do not require you to leave your home. Some cost money but others are pretty cheap, even free! And even if they don’t work, they also won’t cause you harm, so give them a try. Let me know how it goes.

But please note, I’m not a doctor so take my advice for what it’s worth — the advice of someone with endo who is opinionated and has tried a lot of shit. If you want to learn more about endo management from a real doctor, I highly recommend Beating Endo by Dr. Iris Orbuch and pelvic floor physical therapist Amy Stein. I also recommend WomanCode by Alissa Vitti, which has great information about nutrition and hormones for the management of reproductive disorders in women. I’ve learned a lot of what I know from these two books.

And now, the list:

CBD Oil and/or Medical Marijuana

I guess this one is pharma-adjacent but worth mentioning in this list because it is still all-natural. I have to be totally honest though and give you my unpopular opinion — personally, I didn't feel like I had great success using CBD and getting your medical marijuana license is actually a giant pain in the ass in Maryland, so I haven't tried that either. But my understanding is that both CBD and the THC in marijuana are more effective when used together, and if you go to a good dispensary (I recommend Curio Wellness in Timonium if you’re local), they can tailor the product to you (which is great if you’re like me and want pain relief without getting high). I took CBD for several months and found that it helped me fall asleep but honestly didn't feel like it improved my pain. A lot of people swear by it though, and what hasn’t worked for me might still work for you.

Supplements

I take a lot of supplements, almost all to manage endo. In October, I began working with a naturopath who is very knowledgable about endo and is well-versed in the research about the best supplements. She has helped me tailor my supplement regimen to my specific needs, so I am going to mark those with an asterisk and recommend you NOT take them without consulting with a doctor. The unmarked ones are pretty benign and ubiquitous, so do your research and consult with your own doctors as needed (I AM NOT A DOCTOR).

A women's daily multivitamin (Pure Encapsulations): Multivitamins are good for filling in the gaps we don’t get from daily nutrition. But remember, the best way to get all your micronutrients is food, so try to eat a diverse diet with plenty of whole foods.
A probiotic (Garden of Life Women’s): In working with my naturopath, I’m currently off my probiotic, but probiotics are great for getting the good bacteria you want in your gut. There’s a lot of emerging research now that shows people with endo do not have the greatest gut health due to a variety of factors I won’t get into here, but it’s becoming more well understood how important a healthy gut is to everything from mood to skin to…everything, really, that keeps us in general good health.
*ADR formula (Pure Encapsulations): This supplement supports my adrenal glands to help with fatigue. TL;DR, when you’re stressed all the time, your body thinks you’re in a constant state of being threatened, and over time, your adrenals get maxed out. Vitti describes this in detail in WomanCode.
Magnesium glycinate (Curio Wellness): Magnesium is great for relaxation — both mind and body. In particular, magnesium helps relax your muscles, so as you can imagine, it’s helpful for cramps. When visiting the fine folks at Curio, I learned that magnesium glycinate (as opposed to citrate or other forms) is the most bioavailable form. However, because magnesium helps everything relax, that also goes for your digestive system, so if you’re prone to diarrhea, you may need to take the dose down. Additionally, many of us with endo are constipated, so magnesium is helpful in this way as well. Regulating your digestive system is supremely helpful because, to put it simply, pooping every day helps your body get rid of excess hormones.
*Iron (Pure Encapsulations): Having done extensive bloodwork with my naturopath, I learned that while I am not clinically anemic, my iron levels could be better. This is also common among people with endo, because, you know, bleeding.
Calcium (Garden of Life): I started taking this ages ago, before I even knew I had endo, because my dairy consumption is low (I’ve always hated milk). However, calcium is great because in addition to supporting your bones (which need some extra support when you menstruate), there’s also evidence that it can support all kinds of other processes like balancing moods during PMS and maintaining healthy blood pressure.
Fish Oil (Nordic Naturals): Fish oil is great for all kinds of things, especially if you don’t eat a ton of fish in general. I started taking it because I understood it was a great antiinflammatory, and endo is an inflammatory disease. P.S. Nordic Naturals is an ethical, sustainable brand.
Vitamin C (Garden of Life): Truthfully dunno if this does much directly for endo, but many of us with endo don’t have the greatest immune systems, and now is as good a time as any to give your immune system a little boost. FYI though, I’ve had this on my Amazon Subscribe & Save list for years now, and like the disinfectant wipes I also have on that list, everything is delayed/out of stock. So if you can’t get ahold of some vitamin C, bump up your orange consumption.
Melatonin (Douglas Laboratories): I started taking melatonin as needed to sleep before I started seeing my naturopath. Once I started seeing her, she recommended I take it every night. You might find information online that says not to take it every night because your body will make less of it on its own naturally. But per my naturopath, the benefits of taking it every night for people with endo far outweigh the disadvantages. With her, I tweaked my dosage and taking melatonin nightly was perhaps the most dramatic improvement I found in my energy and overall feeling of well-being.
*Oregano oil (Designs for Health): This followed taking an herbal supplement called Biocidin and berberines before that specifically because I learned I have SIBO and gut dysbiosis. These conditions are common among people with endo and I’ll do another post on this at some point. This is one I would not recommend taking without the guidance of a doctor, but I mention it here because if you are able, it is worth looking into the state of your gut.
*Prebiotics (Jarrow Formulas and Go Care): While probiotics introduce good bacteria to your gut, prebiotics feed those good bugs, usually in the form of fiber. Again, I started taking these under the guidance of my naturo after having an extensive analysis of my poop done. Again, more on that in a later post because yes, it is as gross, fascinating, AND hilarious as it sounds.

Mind-Body Activities

According to my gynecologist, any kind of mind-body activity you do has positive effects that last for 24 hours, so if you do one once a day, that’s pretty great. “Mind-body” sounds very buzzy but it really just means anything that can help you get your mind to focus on your body. For me, this means 10 minutes of meditation once a day (I like the Headspace app, though I know there are a ton of great ones out there) and in Before Times, I’d go to yoga classes at least once a week. Now, without my usual yoga classes but a heavy dose of anxiety, I am making a concerted effort to start each day on the mat with Yoga with Adriene. These short lessons are NOT hard if you’re looking for a more intense yoga practice, but they are a good way to get present and grounded to start the day. That said, it doesn’t have to be meditation or yoga either. A mind-body activity can be as simple as going for a (socially distant) walk.

Pelvic Floor Physical Therapy

While this might not be something you can do right now in terms of seeing an actual physical therapist in person, you may be able to have a telehealth consult and your PT can give you “homework” like using a dilator set or doing various stretches. Stretches that both calm the central nervous system (thereby improving pain) and help relax the pelvic floor muscles (thereby reducing any tightness or spasming) are ones that stretch your hips, butt, and hamstrings. They are likely many simple leg stretches you probably already know. Beating Endo includes a list of these. If you’re local, I recommend Indigo Physiotherapy, which is offering telehealth services right now.

Antiinflammatory Diet

I’ve written somewhat extensively about my adventures in switching my diet to an antiinflammatory one so I won’t go into depth here, just the highlights. This is not a specific prescribed diet per se like paleo or South Beach. Rather, it’s general guidelines you already know (i.e., stop eating shit you already know is bad for you). Avoid refined sugars, alcohol, and processed foods. Eat whole foods and buy organic when you can. I recognize that right now this isn’t necessarily accessible to all of us; organic food is more expensive and if you’re trying to limit trips to the grocery store, our processed items tend to be the most shelf-stable. But if you can, eating healthy can go a long way; for discounted organic items delivered to your door, I like Thrive Market.

Some people find success cutting out gluten, caffeine, and dairy. I am not one of these people because I like bread, coffee, and cheese a lot. That said, I do try to limit these things. The key to a diet that helps manage pain is to figure out what triggers you; each person is different. I don’t buy into “X diet is the best diet for everyone.” I don’t personally have a big problem with gluten, caffeine, or dairy. But recently I discovered mushrooms (which I love) lead to major gas and bloating for me. Who knew? Anyway, my favorite starting point for switching to an antiinflammatory diet is The Anti-Inflammatory Cookbook by Madeline Given. It is educational and the recipes are quick, easy, and still delicious.

Massage

I try to get a massage monthly at Indigo with Jessie Bernstein, who specializes in female reproductive health. Of course, massages aren’t happening right now. I used to think of massage as an indulgence, but it’s become a vital part of my health care. It helps with down-regulating the central nervous system as well as with lymphatic drainage, which, in my limited unscientific understanding is good for removing toxins that exacerbate endo. Jessie often massages my hips and helps me stretch the leg muscles that contribute to pelvic muscle pain and she works on my abdomen. This is great for loosening adhesions from previous surgeries but also for digestion.

So why do I mention this when we are stuck at home without our massage therapists? Because, while it’s not nearly as awesome, you can give yourself some of this same TLC. To improve digestion, massage from the right hip straight up toward the top of the belly; massage from that spot over to the corresponding spot on the left; then massage down to the left hip. This traces the path of the food through your large intestine and may help things…move. For your legs and hips, try a foam roller. There are loads of videos on YouTube that can show you different ways to massage those spots. For your whole body, treat yourself to five minutes of dry brushing a day (it’s also good for exfoliating your skin).

Remove Endocrine Disruptors

There are loads of known endocrine disruptors in our everyday products as well as certain substances that are known to contribute to the growth of endo. This sucks. What does this mean for what you can do at home? If you can afford it, I recommend replacing your household items (like laundry detergent and dish soaps) as well as your bath and beauty supplies (like shampoo and makeup) with natural counterparts. It also means trying to replace your plastic bags and storage containers with reusable mesh and glass ones. This can be pricey, so what I did was wait until I ran out of each thing and then replaced it.

Lots of things are being marketed as “clean” now that might not be and unlike reading nutrition labels, it’s a lot harder to figure out what ingredients in your mascara are kosher and which aren’t. Luckily, there are two great apps that rate the “cleanliness” of your products and break down for you the potential harms of different ingredients. These apps are Healthy Living (by the Environmental Working Group) and Think Dirty. Each has a nifty barcode scanner if you’re in the store trying to decide what to buy. For beauty products, my favorite place to shop is The Detox Market, which has a hefty list of banned ingredients, including those that cause reproductive harm and disrupt hormones. If a product is sold on The Detox Market, you can count on it not fucking with your endo.

Epsom Salt Baths

If you have time and a bathtub, these can be helpful, especially leading up to your period. First of all, very simply, they feel good and anything that feels good will be helpful for calming your central nervous system. Secondly, epsom salt is magnesium sulfate, so it’s another way of using magnesium to soothe your muscles and body.

Naturopath

Like I’ve mentioned, I started seeing a naturopath in the fall, and it’s been incredible. I’ll write more about this at a later date, but many naturopaths do currently have telehealth options, so if you’re interested, you may want to consider getting started talking to one now. If you’re local, my strong recommendation is Charm City Natural Health.

A TENS unit

If you are having pain but it is manageable without Advil or another painkiller, I find that the TENS unit does a good job taking the edge off and I don't need to resort to meds. “TENS” stands for transcutaneous electrical nerve stimulation. It has a battery operated device with wires attached to small adhesive pads that you put on your skin. You arrange them in a rectangle surrounding the area in pain (I usually do this around my uterus), and when you turn on the device, it administers pulsing electric shocks to your skin. It does NOT hurt (though when I turn it up too high, it does make my muscles twitch and it’s a SUUUUPER weird feeling). Instead, the theory is it works because the shocks essentially divert the attention of your nervous system away from the painful stimulus (i.e., cramps).

Green Tea

I learned from my naturopath that green tea is also good for a healthy microbiome, so I try to drink organic green tea once a day. I don’t know that this directly impacts endo management, but it’s tasty and it can’t hurt.

Cycle Syncing

This is a concept that comes from WomanCode. The idea is that you tailor your diet, work activities, exercise, and social activities to where you are in your cycle. Obviously, it is not possible to live by this ALL the time, but Scott and I will grocery shop based on where I am in my cycle or I try to exercise differently depending on the week. So for instance, according to Vitti, your testosterone spikes when you ovulate, so this is a good time for you to do exercise that requires a lot of energy, like intervals. Conversely, when you have your period, she recommends recovery activity like walking or gentle yoga. Her app, MyFLO, walks you through some of this.

Smoothies! The perfect vehicles for pulverized, hormone-stabilizing seeds!

Seed Cycling

Seed cycling is the idea that you can boost hormones your body needs more of during different parts of your cycle. For the first half of your cycle (Day 1 of your period through Day 14 or so, when you are supposed to ovulate), you consume 1 tbsp of ground flaxseed and 1 tbsp of ground pumpkin seeds daily. For the second half (Day 15ish until you get your next period), you switch to ground sesame seeds and ground sunflower seeds. Again, there’s no rigorous academic study that I’ve found that supports this (although I haven’t looked hard), but seeds are inherently nutritious and it’s pretty easy to do. I personally think it helps regulate the length of my cycle, if not the pain. Just slip them into smoothies or oatmeal.

Castor Oil Heat Packs

This recommendation came from Jessie and was supported by my naturopath and PT. Basically what you do is put castor oil on your abdomen, then put four layers of flannel on top (I use two old flannel pillowcases). Then on top of that, you put a heating pad and sit for 10 minutes or so. I usually read before I go to sleep, so this is when I do this. You're supposed to do it for three to four days on then two to three days off and you're not supposed to do it when you have your period. This is supposed to be good for digestion, blood flow, and loosening up any adhesions/scar tissue.

Clary Sage Essential Oil

This is supposed to be good for cramps if you use it topically or add a few drops to a bath. But also know that if you get pure essential oil, you should mix it with coconut oil or another neutral oil before putting it on your skin or it can irritate your skin. I like Aura Cacia’s clary sage, which I had to go to Mom’s Organic Market to find back in the day, but you can now get it at Target, so that’s convenient.

Therapy? Antianxiety Meds?

Finally...anything that helps with stress I think goes a really long way — therapy, antianxiety meds, etc. I personally have found that when my stress and anxiety are out of control, my endo is out of control, regardless of what I eat or what lifestyle changes I make. Fortunately, remote options for therapy are available, and I personally don’t mind telling you that when this corona cluster started, I called my doctor and re-upped my Xanax prescription that I hadn’t felt like I needed filled in over four years.

This is a tough time, and it’s so important to be gentle with yourself. Being hard on yourself to be more productive, be more active, be calmer, be more grateful, be more whatever it is you think you should be will only serve to make you feel worse, and making yourself feel worse will make your endo worse. So be kind to yourself. You’re doing your best. If your period sucks, it’s not your fault.

Have you tried any of these things? Tell me how they worked in the comments or on Instagram!

xo,
S

Welp, I did it.

I ran — and finished — the New York City Marathon. Since getting into running a few years ago, this was my second marathon. I ran the Chicago Marathon in 2016 and wanted to run another in 2017, but my second endo surgery and a thyroidectomy later in the year sidelined me.

Last November, when my cancerous thyroid was making me want to sleep 14 hours every night, I felt major FOMO watching the NYC Marathon on Instagram. I REALLY wanted to be there running it.

So when the opportunity came around to apply to run for the Endometriosis Foundation team, I applied right away. And then when the EFA team accepted me, I swear to god, I felt my uterus cringe.

In addition to being both my ticket and my motivation to run the marathon, endo was truly my ever-present running partner through training and the race — sometimes for the good, and sometimes not so much.

Training was like a microcosm of my life with endo; even if the disease isn’t affecting me physically, it’s always lurking in the corner of my mind. Here are some reflections on how endo was with me on every training run and every step of the race.

It kept me motivated. In 2015, endo turned me into a shell of myself in more ways than one. A year later, when I wrote about how the disease turned my life upside down, quite a few friends and members of my family told me they had no idea that I had been going through that. That’s because, like many chronic illnesses, endo is invisible. Since my first period some 20+ years ago, I’ve learned how to play through the pain every month, and with the exception of the closest people in my life, no one knew about the physical, mental, and emotional toll because I didn’t talk about it. Why talk about it when it was my “normal?”

Back then I would not have been able to train and run a marathon. I know there are literally millions of women and girls out there who are barely able to to get through day-to-day life, much less run a marathon, and remembering that kept me motivated throughout the toughest training runs. And knowing that dozens of friends, family, and acquaintances donated to help support the Endo Found in my name pushed me through the race’s toughest spots.

Because of endo, I’ve been through worse. Don’t get me wrong — running a marathon is NOT easy. And NYC with its hills and bridges made for a much tougher course than flat Chicago. Even though the first eight or so miles flew by thanks to the awesome Brooklyn crowds and my jolt of adrenaline, about halfway through, I was no longer able to truthfully tell myself “this is easy.” By the time I hit the Queensboro Bridge around Mile 16, a roughly mile-long uphill climb, I was thinking, “well, I could just fling myself over the side…”

By that time, every muscle in my body ached and every step felt excruciating. I was slowing down and I still had over 10 miles to go. But then I remembered that I’ve been through MUCH worse pain than that — endometriosis pain. And endometriosis pain has no set end point. Endo teaches you resilience, and I knew I had been through worse pain than the brutal NYC course could put me through.

I felt guilty for training and then running the race. Those who know me well know that guilt has and always is a struggle for me. I’ve always worked out a lot and I always work out hard. So hearing multiple members of my healthcare team tell me to take it down a notch has never been an easy thing for me to hear — or listen to.

So when I told my pelvic floor physical therapist that I had committed to running the race and she reminded me of the ways extensive running could set me back, I felt guilty and ashamed. I know that running tightens your hamstrings and other muscles that support your pelvis, and I know that it also increases inflammation in the body. Both of these processes do no favors for a body experiencing endo.

This is why I decided this would be my last marathon. I couldn’t train for a marathon and cycle sync because if a long run fell during my period, it was hard to take the prescribed rest and find a way to make up the miles. When I got to the race start, saw the Verrazano Bridge ahead, and thought to myself “I want to do this again,” of course I felt guilty all over again.

However, understanding my endo and my body meant I forced myself to take incredibly good care of myself while I trained. When I ran Chicago, I worked out like a crazy person. We’re talking four runs a week; spin, kickboxing, and lifting twice a week; and yoga one day a week. What can I say? After the year I had in 2015, feeling so out of control of my own body, I was determined to override my limitations and do everything I felt like I had missed out on.

Now I know a lot more about endo and the way my body works. And after that conversation with my PT, I understood that my biggest priority had to be finding balance. That’s really not easy to do when you’re training for a marathon. There is just no way you can run 20 miles on a Sunday and frankly do anything else. But I did my best to “partner” with my body. This meant regular acupuncture, massage, Epsom salt baths, cryo and oxygen therapy, and you guessed it — rest.

When I did slip up though, I felt guilty all over again. Stretching my glutes, hips, and hamstrings for about 16 minutes at a time is part of my daily routine since I started PT (whether I run that day or not). This helps keep my pelvic muscles from literally spasming from pain (compounding the pain). When I started training in earnest, this became crucial to my self-care routine along with yoga at least once a week. But if I ever missed a day, it was hard not to beat myself up for not doing everything I was “supposed” to. In fact…

I fell off the antiinflammatory bandwagon…hard. If you’re a runner, you know that at the height of your training, you get ravenous. Or at least I do. I wanted to eat everything in sight. And even though I didn’t go crazy and eat junk food on the regular, my body definitely needs carbs for a good long run, and cutting out bread wasn’t working for me.

Ugly crying as I ran/hobbled over the finish line.

One chronic disease + another chronic disease + marathon training = hardcore fatigue. Nothing compares to the fatigue I experienced prior to having half my thyroid removed. But training for a marathon on top of having endo and half of an already-underachieving thyroid made for some pretty extreme exhaustion. If you didn’t hear from me for a couple months leading up to the marathon, now you know why — I was busy just trying to stay awake past 8 p.m.

Endo changed my body and training for the marathon forced me to come to terms with that. I feel healthy and healed but two years after I ran Chicago, I am two years older with two more surgeries’ worth of scars and I am just not as fast as I was (which was never fast to begin with). It was really hard to accept the fact that even on my best days, I have limitations that are not under my control.

I struggled with self-doubt in a way I hadn’t experienced when I trained for Chicago even though then I didn’t even know if I *could* do it, because I hadn’t ever done it before at all. Then, I was constantly improving, constantly setting distance and pace personal records. After being sidelined for a year, I couldn’t get back to where I was, no matter how hard I trained, and I felt real fear and panic several times while training that I wouldn’t be able to finish the race. Training for NYC was as emotionally and mentally challenging as it was physically challenging.

Ultimately, the community of endo warriors I’ve found inspired me, encouraged me, and made finishing the marathon overwhelmingly rewarding. One of the best silver linings about having endo is the amazing resilient community I found, both IRL and on the internet. Hearing from sisters I’ve met through the Baltimore Flow, Endo Warriors, the Cramped Style Instagram, and other places made the race incredibly touching and meaningful, and I am so thankful for that.

When you have endometriosis, it is never out of your daily thoughts, even on your best days. Training and running the NYC Marathon was no different, but overcoming it and literally doing it for my sisters made it so worthwhile and an experience I’ll have forever.

Now when I have terrible cramps, I can tell myself it’s nothing. If I ran the NYC Marathon, I can get through anything.