Go On, Fire Your Doctor.

I started this post at the beginning of March in honor of Endometriosis Awareness Month.

Then the whole ~pandemic~ thing happened and I didn’t feel motivated to do much of anything, least of all write. And then once I got my writing mojo back a tiny bit, I certainly didn’t feel like raging against doctors and the healthcare system was in particularly good taste considering these were (and are) the people fighting to save the lives of people suffering from a virus no one knows anything about it amidst the ramblings of an unstable toddler who is telling people to ingest bleach and take a medication meant for other diseases.

Now, the uprising sparked by the murder of George Floyd has brought me back to this post, though it’s different than what I had outlined when I started writing back in March. While the mainstream conversation stemming from the protests has largely been about the systemic failings of the police, this reckoning has also spurred other conversations about the inequities that exist for Black people in all facets of American life.

Because I work in healthcare publishing, I take it for granted that everyone knows that when it comes to reproductive healthcare in particular, Black women are at a MUCH greater disadvantage than white women. Black women are three to four times more likely than white women to die during pregnancy and childbirth. Black women are three times more likely to experience fibroids. Black women are at a higher risk for a number of health conditions for a variety of reasons ranging from lack of access to care to the toll of chronic stress from being exposed to living with racism, whether overt or latent, every single day. I got these stats and you can read more about these issues here. The reality is that while I’ve been reading the stats as part of my job, many non-Black people are learning this now for the first time.

I’ve been careful to note regularly that my experience of living with endometriosis comes from a place of white, upper-middle class privilege. I’ve stated that however long and hard my path to getting proper treatment and care was, it’s exponentially harder for people in marginalized groups and/or people who have access to less money. When people ask about my second surgery, I hesitate to recommend my surgeon, because as skilled as she is, the surgery is simply NOT ACCESSIBLE. I could not afford it myself; if it weren’t for my parents, I’d have been looking at a choice between major medical debt and chronic, ever-worsening debilitating pain. That’s an example of generational wealth, and the systems in this country have FOR YEARS tried to ensure Black people could not build it. I’m keenly aware that not everyone is as lucky as I am.

Now…I’m not a Black woman. This is not the path I’ve walked, and it’s not for me to talk about that journey (I recommend watching the Endo Summit’s panel discussion on that topic here, which spurred me on to finish this post, their stories reminding me of my own and the stories I’ve heard from so many others). I’m also not a doctor. I’m not a legislator. I can’t make the changes I’d like to see directly from within. What I am though is someone who knows a lot about endo and someone who is working hard to build a community for people with endo in my small corner of the world.

Because of that role, a lot of people — friends, friends of friends, strangers on the internet — come to me directly with questions and their stories. Their stories echo each other across demographic lines. And one VERY CLEAR pattern that has emerged out of the stories I’ve listened to over the last few years is the dismay that people with endo (or suspected endo) are feeling as a result of interactions with their doctors. Dismay isn’t even the right word. It’s a spectrum ranging from dismay to rage to angst to trauma. We go to doctors for answers, for a plan, for care, to feel better. And there’s just something about endo that makes that particularly hard to get from too many of our doctors.

Why? The factors are endless. A lot of the reasons can be attributed to that foe we all know and hate, the patriarchy. Women’s pain is dismissed; painful periods in particular are considered “normal.” Women have not traditionally been taught to advocate for themselves. Many women (for sure white women) come from cultures that defer to authority, and doctors, as experts, are the authority so many women feel uncomfortable challenging that authority.

Diseases that affect men or both men and women are generally the diseases that are researched or get funding for research. Then you have the disease itself. Relatively speaking, we still don’t know much about it — why some people get it and some don’t, why some people exhibit symptoms and some don’t, LITERALLY WHERE IT EVEN COMES FROM. Most doctors don’t know what it looks like; they don’t know what the physical lesions look like and they don’t know what all the symptoms look like. The symptoms are different for everyone. Someone with widespread endo may experience no symptoms, and someone with a small, localized amount of endo might have excruciating, debilitating pain. Pain isn’t the only possible symptom meaning it often gets misdiagnosed. Constipation? Diarrhea? Sounds like a gastrointestinal problem. Numbness? Sounds like a neuromuscular problem. Trouble breathing? Sounds like anxiety. ALL of these symptoms might be the result of endometriosis, and doctors don’t always know what to look for. In fact, when it comes to endo, very few know what to look for.

Because like all humans, doctors don’t know what they don’t know.

The problems come about when a doctor won’t admit that, when a doctor won’t do you the courtesy of sending you to the right person who DOES know, or when a doctor won’t listen when you tell them over and over that something still isn’t right, that you don’t agree with their proposed care plan and you want an alternative, and that you want to know WHY you’re ill, not just how to cover up the symptoms so you can just get by, slogging your way through life.

Searching for a new doctor versus putting up with a crappy doctor when you feel like shit? Talk about a rock and a hard place.

Regardless of the reasons, this reality is UNACCEPTABLE. No one should have to accept pain and the other debilitating symptoms as a daily existence. And no one should be forced to accept it because their doctor doesn’t have the answer. To that end, I find myself reminding people regularly that it is OK to fire your doctor.

At the end of the day, we’re all paying our doctors for a service, just like you pay people to cut your hair, cook you a meal in your favorite restaurant, or give your car an oil change. I think we forget this fact because going to a person to fix something going on with your body is inherently intimate. You are vulnerable in a way that you aren’t when you’re paying for other services. And that’s part of why insurance exist and medicine is expensive; it’s a very valuable service. But that doesn’t mean you have to do whatever your doctor tells you or that you have to accept it when your doctor won’t listen to what YOU think is the best. If I’ve said it once, I’ve said it a thousand times — YOU are the sole expert on your body. No amount of medical school, training, or experience can make it possible for a doctor know exactly what it’s like to live in YOUR body.

So sometimes, you have to fire your doctor.

Would you go back to someone who did a hatchet job on your hair that took months to grow out? No. Why go back to someone who misdiagnosed you because they weren’t listening, causing you to suffer longer than you needed to? Just because they know best? Well obviously they don’t.

Because every body is unique and everyone is different, no one doctor is perfect for all. Being sick is to be vulnerable, which means it’s important to click with your doctor in a way that it is not as important to click with the mechanic doing your oil change. So no matter how many people RAVE about Dr. X, if you don’t feel like she’s listening to you, move on. If you feel like Dr. Y dismissed you, ask his front office for your records and find another doctor who takes time. If you wanted Dr. Z to give you an alternative to birth control pills and she said that was the “only” answer, NEXT. Lean on your community for recommendations; chances are someone loves the doctor who’s also right for you. (And if you’re in Baltimore, lean on the Flow!)

Your comfort and your autonomy is paramount. Do not forget that and do not hesitate to ensure that is honored most of all.

xo,
S

Endo at Home

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.

A vegan antiinflammatory wonderland.

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

Flow Portraits: Endometriosis, Body Image, + the Boudoir

I would love to be body positive about my own body, but the truth is I’m not. I find it much easier to point out how beautiful my friends are and scoff when they put themselves down.

I don’t *hate* parts of myself like I did as a teenager and a young adult. I’ve come to terms with the general shape of my body and how it looks as it has fluctuated through changes born of surgeries, race training, and new ways of eating.

But I don’t love it either. When I went to try on wedding dresses, the first thing I told the consultant was I wanted to be able to wear a normal bra to minimize my boobs but I also didn’t want something that made me look matronly (something us big-boobers deal with often). When looking back at photos from the NYC Marathon, I’m so grateful that my strong legs got me through the training and 26.2 miles, but how big my thighs looked didn’t escape my hypercritical eye.

In a nutshell, my feelings about my body are complex. Sometimes they’re positive and sometimes they’re negative. But as feminist as I strive to be and as much as I want to love my body, I can’t say my feelings about it ever even approach the radical self-love movement pervading Instagram. And as a feminist I feel guilty about this, a hypocrite when I try to pump up the self-esteem of others.

Photograph by Jillian Mills

The reality is my feelings about my body extend far beyond what I see in the mirror. With chronic illness, you become keenly aware of what is going on inside of you and the fact that it isn’t working the way it’s supposed to. With endometriosis, you’re confronted with understanding that that which makes you a woman is also that which causes you unbearable pain and anguish. Something that is to date incurable is causing your own body to sabotage itself. Forget body positivity. It challenges even my ability to feel grateful for the parts of my body that do work the way they’re supposed to.

So when Dr. Sam DuFlo of Indigo Physiotherapy connected me with photographer Jillian Mills after coming up with the idea of doing a boudoir popup party for the Baltimore Flow, I thought it would be great for the members of the Flow. I imagined myself in a coordinator role, but certainly not a subject to be photographed myself.

How would a boudoir shoot work in a group setting? We talked about setting up a private space for each person to go one by one or doing it all together, cheering each other on. They asked what I’d prefer if it was me.

“Definitely private,” I said, blanching at the thought of multiple people seeing me in my underwear at once.

As the brainstorming session went on though, we came to the agreement that all together would be more suitable. Jill, having done similar popups before, said we’d likely have to designate someone to go first. Sam and Jill looked at me.

The look on my face told them all they needed to know.

“I’m not going to lie,” I said. “This strikes fear in my heart, but I can do this for the Flow. I can take one for the team.”

Still, as the conversation went on and we considered how we’d promote the event, Jill said she had photographs she could use to make a flyer, but it would be better if it was someone from the Flow…like me.

And that’s how I got talked into doing a boudoir shoot.

---

When I think back to that conversation though, it wasn’t just about doing it for the Flow. That conversation inspired me. Jill tapped into something I had long been thinking about but hadn’t articulated fully to myself or to anyone else.

Photograph by Jillian Mills

Body positivity is a beautiful thing and those who embrace it should be celebrated. But for those of us who haven’t gotten there — may never get there — should we feel doubly bad? Do I feel bad about my body AND bad about the fact that I don’t like my body and can’t seem to find a way to?

Maybe it’s enough to get to a place of acceptance and peace. When Jill articulated this concept, it was like an epiphany to me. I don’t HAVE to get to a place of loving my body. Of course it would be great, but feeling comfortable in my own skin and at peace with all its quirks and flaws might be great too.

I’m confident in so many other ways. I’m proud of the work I’ve done in the endo community and advocacy space. I’m happy with the career I’ve crafted and confident it will continue to progress and I’ll continue to grow. I’m grateful for the amazing network of support I have and credit myself with intentionally choosing the people I want in my life. So can I get to a similar place of satisfaction with my body?

Only time will tell, but I will say my photo shoot with Jill was a great step in the right direction. This is not an advertisement — she’s just really THAT good. When I showed my photos to a couple of my best friends and Scott, they all commented on how comfortable and confident I looked. Jill makes this easy even though previously, fully clothed, I’ve only felt awkward and uncomfortable in front of the camera. I didn’t have to find lingerie to wear (that is SO not me). Instead I came prepared with loungewear and some athletic clothes. I didn’t have to figure out how to “perform” sexy; she just told me where to look and how to sit or stand.

So often we see images of endometriosis that are hard to look at — surgical scars, skin discolored from extensive heating pad use, bloated bellies, and pale, anguished faces. So I’m really excited that with Jill and the support of Dr. Sam and Indigo Physiotherapy, next month for Endometriosis Awareness Month, we’ll be celebrating our bodies, finding the beauty in them, and making inroads toward becoming at peace with them (for those of us who aren’t there yet…kudos to those of us who are!). My experience with Jill was empowering and joyful and I can’t wait for the Flow-ers to experience that too.

Flow Portraits will take place March 14 at Indigo Physiotherapy from 11 a.m.-2 p.m. and is currently open to members of the Baltimore Flow. It is a ticketed event, and tickets are pay-what-you-wish with a suggested donation of $50; 100 percent of these donations will go to the EndoWhat? School Nurse Initiative, which sends educational materials to school nurses to help them identify symptoms of endometriosis in students. We’ll be able to choose the schools the packets go to, so this money will be reinvested in our community in Baltimore.

For more information, you can visit the Facebook event page here and Jill’s post about it here. You can buy your ticket here, and make sure you do because spots are limited!

xo,
S

If You Can't Handle Me At My Luteal...

I’ve been tossing around the idea to write a post about the role endometriosis plays in my romantic relationship for months now. I took so long to write it for a few reasons:

1. Having been a single lady for the majority of my life, I’m sensitive to the fact that it isn’t always fun to read about other people’s happy relationships.

2. I’m not a relationship expert.

3. You know…it’s personal. Like sure, so is writing about how you’re bad at using a menstrual cup, but it’s a different dimension and involves another person.

But the more conversations I have with my fellow endo warriors and my friends in the Baltimore Flow, the more keenly aware I become of how many people need to hear my little soapbox rant about dating and endo. So consider the above to be both a trigger warning and a disclaimer before proceeding.

In my mid-20s, I dated a pretty decent guy for three years. Like many girls that age, I asked very little of him. The idea of being deemed “clingy” or “needy” was anathema. Like so many other girls, I wanted to be a Cool Girl. I didn’t put demands on his time, I didn’t make a big deal out of it when he forgot my birthday, and I never brought up our future. Most detrimental to our relationship was the fact that I never asked him to integrate me into his life; I never met his family and we only hung out with my friends, never his.

I broke up with him when I decided he was never going to give me what I needed. He felt blindsided. I learned (with the help of therapy) that by not making my needs clear to him, I also contributed to the failure of our relationship.

After that (and after watching Brene Brown’s TED Talk multiple times), I decided I would be wholly and authentically myself in future relationships. I learned that the hard, scary reality is that if you don't give someone the chance to see every part of you — even the ugliest bits — you've never even given them the chance to love all of you, and you're selling yourself short. It’s a risk, but a couple years later, when I met someone new, and he seemed to be able to provide all the things my previous boyfriend could not or would not, I was fully myself, and I fell hard and quick.

I documented this short, failed relationship that collided with my first endo surgery three years ago, so I won’t recount the story here. I wrote that essay roughly a year after our relationship ended. If you were to go back and read it, you might notice the sense of sympathy I felt for him. When he broke up with me a couple weeks after my surgery with no coherent explanation, I gathered what few clues I thought I had based on things he had said and told myself that having to deal with me and my endometriosis was just too big of an ask and he wasn’t ready to step up. And I didn’t think he should have to.

This might make you think he wasn’t a good guy. What kind of a schmuck doesn’t stand by someone they are dating when that someone is going through a medical odyssey? (He even said as much when he was insisting it wasn’t the endo that was driving him away.) I didn’t see it that way. To me, it made sense that a young, good-looking guy would not want to date someone who was in chronic pain, who was too tired to go out, who often didn’t want to be touched.

As it turns out, he was a shitty guy for other reasons that had nothing to do with the endo! I found out later he had cheated on me among other unsavory details. I was upset about it for a long time.

A real shithead.

While the cheating does make him a bad guy, I still don’t think not wanting to deal with the endo makes him a “bad” person, exactly. It’s just like any other preference; I prefer a partner who can engage in interesting conversation with me rather than someone who is quiet. For a shallower example, yes, I prefer a partner who is taller than me. We all have our preferences. It’s perfectly valid to decide you don’t want to date someone who has a chronic illness.

HOWEVER, if he truly did not want to date me because I had endo, and he continues to not want to date someone who is dealing with something similar, there’s a good chance he won’t ever have a quality, long-term relationship in his future. Obviously not every woman has endo, but every woman, every HUMAN, inevitably goes through some shit.

Like my current partner Scott recently told a friend of his, if you’re in it for the long haul, at some point you will be the one taking care of your partner, and at another point, your partner will be taking care of you. Because that’s fucking LIFE, guys.

I couldn’t hear it at the time, but my best friend told me then that if this shitty guy wasn’t up for dealing with a minimally invasive outpatient surgery that was thankfully free of complications, then how was he going to deal with the difficult obstacles life inevitably would throw our way in the future? She was right. Life is full of tough stuff. People lose jobs, family members get ill, if you have children, life will constantly be throwing challenges your way.

This is how I’ve come to consider endometriosis to be a top-notch filter for not just who I date, but who I want surrounding me in my life.

A few months after that breakup, I met Scott through a mutual friend. We hit it off instantly and talked nonstop for a few weeks. But when it was time for him to go back to Florida where he was getting his masters degree, he ultimately decided he did not want to pursue a long-distance relationship, having been down that road before.

Naturally, I was upset. When I found out he was dating someone, I was angry and unfriended him, as one does. We didn’t speak for a year. Newly single the following fall, he popped back into my life, adequately groveled at my feet, and we’ve been happy ever since.

Also let’s be honest, he is very cute.

Just a few months after we started dating again, it became clear I would need my second surgery to treat the endo. This period of time was FRAUGHT to say the least. My surgeon was out of network and out of state, and I had no idea how I was going to afford the preop appointments, tests, and trips between Baltimore and New York in addition to the massive price tag on the surgery. I was in pain more and more often with increasing intensity. Scott was still living and working in Florida at the time. And deep down, I was scared that this would be a repeat performance of my first surgery and Scott would decide I wasn’t worth the trouble. There were countless tearful phone conversations.

When the time came, Scott was in NYC with me and my mom. He was there in the hotel room, unfortunately listening to me shit my brains out and encouraging me to stay hydrated the night before while I endured the bowel prep necessary for abdominal surgery. He was there ensuring me he still loved me despite the thin walls and the fact that I angrily snapped at him whenever he tried to get me to sip some broth.

He spent the hours while I was in surgery with my mom, and while I was in recovery with her, he got my car, which was parked at a friend’s in Brooklyn, and made some stops on his way back to pick up flowers, soup, a pastry, and most thoughtfully of all, cough drops because he knew my throat would be sore from the breathing tube. He drove us home from New York.

He was there through the weeks of recovery, walking me around the apartment in the middle of the night when spasms jerked me awake. He administered heparin shots to my belly since I couldn’t do it myself, saving my mom a daily trip into the city for the five days following surgery. He even went to the store to pick up stool softeners for me when the surgery and the postop painkillers caused me the completely opposite problem the bowel prep caused. It wasn’t pretty.

A few months later, when a friggin cancerous lump appeared on my neck (good riddance to you, Donald Lump), he was by my side again for my second surgery of 2017, a few days before Christmas. What a banner year.

He went through it with me all over again — the heparin shots, the constipation. Half my thyroid was removed through my mouth in a new surgery being pioneered at Johns Hopkins. What does that mean?

If you can’t handle me in my jaw bra, it means you don’t deserve to remove my actual bra.

It means I looked like this.

Friends, I am someone who in my 20s died inside at the thought of a potential boyfriend seeing me without makeup. I cannot be bothered about such things anymore, but letting a romantic partner see me like this was next-level. THIS is what vulnerability looks like. It isn’t pretty. But it’s also what intimacy looks like.

We clean up well when we aren’t wearing jaw bras.

This post is not meant as a way for me to brag about Scott. Our relationship is not perfect and we do fight from time to time (mostly about the dishwasher). Not all people are natural caregivers like Scott, so I am lucky in that way. I’m not nearly as nurturing as he is, and having him with me throughout 2017 made life so much more manageable.

But the point is he isn’t special. I mean he IS special to me, but he is not unique. There are plenty of people out there who are up to the challenge, whether you have endo, thyroid cancer, or any chronic illness. There are plenty of people willing to put up with your crazy family or your mental health challenges or your demanding job or WHATEVER ELSE you think makes it tough to be with you.

Talk about these things. Talk about your endo, or your personal “endo,” whatever that might be. Not talking about it doesn’t mean it doesn’t exist. It doesn’t make it not a fact of your life. Your endo might not be who you are, but it is PART of who you are, and it is part of your life. Those parts make you YOU, and you ARE worth loving. Don’t rob someone of the chance to love you, and don’t rob yourself of the chance to be loved.

And the next time someone can’t hang, don’t be sad. Be grateful they didn’t waste more of your time, and if it makes you feel better, slap a poop emoji on their face.

xo,
S

Endometriosis 101: Fact or Fiction?

I am SO TIRED OF ACTUAL MEDICAL PROFESSIONALS telling me to just get pregnant. So, in honor of the fact that Endometriosis Awareness Month just wrapped up, I’m out here busting these myths. It’s time for another lesson in Endo 101.

Misconceptions (and flat-out lies) are particularly insidious when it comes to endometriosis. Why? So little is really known about endo that it creates fertile ground for ::ahem:: fake news, and while most are well-meaning, many doctors and other healthcare practitioners are the ones spreading these myths. To their patients. Who are desperate for answers and plans. And who may very well make choices about their health that are irreversible and uninformed through no fault of their own.

So allow me to drop some endo knowledge on ya.

(And no, I’m not a doctor, but accuracy is more important to me than pharmaceutical company kickbacks, and if you want to check my work, feel free to cross-reference this credible source, this credible source, and that credible source.)

Fact: To date, there is no cure. So, what does this mean? I’ll tell you what it means:

Fiction: Hysterectomy is a cure. That doesn’t even make sense. Endo tissue grows outside the uterus, so why would you remove the uterus and not the disease itself and expect success? Yes, yes, I know Lena Dunham did it, but it’s unclear why (and she did need another surgery again afterward). She may have had adenomyosis, a similar disease to endo, in which endometriosis tissue grows within the uterine muscle. Hysterectomy is a cure for adeno, but not endo, and some women who have hysterectomies continue to experience endometriosis symptoms afterward, most likely because all of the offending tissue was not removed. Imagine if you had hoped to have kids one day but thought you had no other alternative to relieving your suffering…only to continue suffering afterward?

Fiction: Pregnancy is a cure. Also fun fact, endo makes pregnancy more difficult to achieve. And you might want kids but might not be ready. Or might not feel like you are healthy enough to be a present parent. Or might not want to be a single parent but might not have a partner yet. OR you might not want kids at all because sorry, but the solution to one problem cannot be a lifetime of other problems. OH AND SCIENCE. Pregnancy might help some women, but it is not a cure.

Fiction: Birth control is a cure. Birth control might adequately treat the symptoms of endo. For a few short years, it made my period a cake walk. Of course, it also masked all the problems going on inside of me, and when I could no longer take birth control (because LOL it almost killed me), my endometriosis symptoms returned with a vengeance.

Fiction: Yoga/meditation/certain foods/whatever the hell else your sister/mom/cousin/friend did is a cure. These things might very well help manage symptoms (and I am all for them), but they are not cures. If not eating sugar or dairy removed all the endometriosis tissue in the abdomen, no one would have endo.

Fiction: Lupron and Orilissa are cures. The doctor who put me on Lupron told me it would “burn out the endo left over” after my first shitty surgery. This should have been a red flag to me because DUH, if it did that, no one would have endo, but I was too sick and desperate to question it. I also didn’t question if there were side effects besides those of menopause because that’s what Lupron and Orilissa do. They shut down your reproductive system by manipulating your pituitary gland hormones, giving you a break from endo symptoms. But that’s all they do. They give you a BREAK. Because you can’t be on them long-term due to the serious damage they can do to your body. A break at what cost? Speaking of cures…

Fact: Excision surgery offers an endometriosis patient the best chance of relief. It’s ALSO not a cure, but to date, evidence shows that excision surgery (in which the endo tissue is cut away) with a highly trained surgeon results in the longest period of relief, often three to five years or more (depending on the state of the disease and the skill of the surgeon). By contrast, ablation surgery (in which the endo tissue is burned away) most often provides relief for a year or two before another surgery is needed. For me, I experienced no relief at all and in fact felt worse. This is because ablation surgery essentially only removes the tip of the endo iceberg and additionally creates scar tissue. Your insurance company might view excision and ablation surgeries as the same, but they are vastly different and have vastly different results.

Fiction: Any gynecologist can treat endo. Most gynecologists are trained enough to perform ablation surgeries, but as discussed, this is most often not enough (or even a great idea). Surgeons who perform excision surgery undergo extensive training in order to perform excision surgery, which is much more difficult. That said, excision surgeons themselves vary in degrees of training and skill, and that factors into the success of the surgery as well.

Fiction: The stage of your endo indicates its severity. Some doctors stage a patient’s endometriosis similarly to how cancer is staged. The higher the number, the farther the cancer (or endo) has spread beyond its origination site. So…

Fact: Staging might indicate how widespread the endo is, but location of endometriosis lesions does not correlate with how much pain a patient experiences. So actually this staging system is rampant bullshit because if a patient “only” has stage I endo, she might feel like she is unreasonably complaining about her pain, when someone with stage IV endo “probably has it so much worse.” In reality, someone with stage IV endo might go her whole life with no idea she even has it because endo is a twatty mystery. Where it grows, how your body processes pain, and a whole host of other factors makes the endo experience different for everyone. This is why treatment that works for one might not work for another, why one endo patient may get pregnant while another one struggles to, and why what feels to me like a knife in the ovary might feel to another like her leg is being sawed off.

Fiction: Endometriosis occurs when the uterine lining grows outside of the uterus.

Fact: Endometriosis occurs when tissue like the uterine lining grows outside of the uterus. I know, these two sentences paired together might require you to look twice, like one of those old comic strip puzzles where you look at two drawings side by side and they look exactly the same and you have to spot the differences. But this IS a difference and one that many doctors and so-called endo resources gloss over. But it’s just not accurate, and the more accurate we are about this disease, the better off we’ll be. Endometriosis tissue is not the endometrium.

Fiction: Endometriosis is a period disease caused by retrograde menstruation. I am not going to get too far into what retrograde menstruation is because this theory of endo has since been debunked, but it is basically like acid reflux but with your period (the idea is that blood flows backward from whence it came). This was a running theory about the cause of endo for a while, until researchers realized that a fuck ton of women experience retrograde menstruation who don’t also experience endo. In fact…

Fact: Endometriosis has been found in fetuses. Researchers have found endometriosis in fetuses. So while puberty and periods may be the “trigger” for the disease symptoms, it is clearly not a factor in the underlying cause of it.

Fiction: Endo is just painful periods. LOL if only. Not only is the endometriosis tissue itself not just limited to the pelvis, the symptoms and complications extend so far beyond the realm of shitty periods, it isn’t even funny.

Fact: Endo is a whole-body disease. It’s pain in between periods. It’s bleeding nonstop. It’s leg pain, back pain, chest pain in some cases. It’s chronic fatigue. The FATIGUE! It’s anxiety and depression. It’s hormonal mood swings and acne. It’s diarrhea sometimes, and it’s constipation others. It’s pain when peeing and it’s painful sex. And it’s a mindfuck because — I cannot say it enough — it’s a different cocktail of symptoms and problems for each and every one of us.

Fiction: Endometriosis is rare. Just because you haven’t heard of it, doesn’t mean it’s rare. In fact…

Fact: One in 10 women has endometriosis. If we all made up a country, it would be the eighth biggest country in the world. That’s a lot of people, people!

And we need our healthcare system to do better.

xo,
Staci