The Genetics of Endometriosis

Disclaimer: While I am always careful to use reputable, peer-reviewed sources in my writing, I am not a doctor. You should neither take medical advice from me nor from a commercial DNA test. 23andme can tell you with 99% accuracy about the genes it tests for, but it does not test for nearly all of the millions of polymorphisms (a.k.a. variants in your DNA) that make us human beings unique individuals. Always have your 23andme results validated by a genetic counselor before making any medical decisions that could affect your long-term health.

I have always been fascinated by genes, ever since we did those Punnett Squares in the seventh grade (if you know, you know). If I were better at math and science, I would consider a career as a geneticist in a heartbeat.

Unfortunately, that is not my calling in life — but educating people about endometriosis is! So, I thought, why not nerd out about the genetics of endometriosis? For, y’know, educational purposes.

Back in college, David and I took the 23andme DNA test just for fun. (Out of nowhere, I found out I am 20% Greek, which explains my affinity for Mediterranean food.) When you take the 23andme DNA test, you can download your raw DNA file and upload it to all kinds of websites for analysis.

Because I’m a hypochondriac, that’s exactly what I did. But, in my defense, David did it first.

In fact, that DNA test was a big part of what sparked my journey into the medical system. I had been having bowel issues for awhile by then, and found out I was genetically susceptible to Inflammatory Bowel Disease (IBD). The rest, as they say, is history….though that colonoscopy prep still haunts me to this very day.

Every once in awhile, when I get bored, I’ll open my genome in Promethease and start scrolling through just for fun. Do you do that, too, or are you normal?

Out of curiosity, it occurred to me to check and see if I had any genes linked with endometriosis, the one disease I know that I most likely have. After that quick search, I wound up doing a lot of digging…much, much more than I anticipated.

As much as I know I should probably be studying for the GRE right now (I’m taking it in less than a week!), I figured I’d share some of what I learned about the genetics of endometriosis — and my own DNA — with you all.

How Do You Inherit Endometriosis?

Doctors have known for a long time that there is a genetic component to endometriosis. Without looking at specific genes, we know that endometriosis tends to run in families.

But how does endometriosis work for those of us who don’t have a history of endo in our families? If this is you, I’m in the same boat. No one in my family ever had the excruciatingly painful periods that I do — or, if they did, they never complained about it.

That’s where a little thing called gene expression comes into play. This is where genetics starts to get a little complicated, so bear with me!

You see, our genes are only half the battle when it comes to whether or not we develop a disease. Our genetics can increase our risk, but often, they must interact with our environment in a specific way before the disease actually develops.

In short, endometriosis has a genetic component, but it is also deeply linked to our environment. Anything from toxic chemicals in our surroundings to psychological stress can trigger a pathogenic gene response. These genes can also be “turned on” by specific sequences of noncoding DNA, located between pairs of genes.

If you have endometriosis but no one in your family does, it’s likely that they carry the same genetic mutations responsible for the disease — but, unlike yours, their environment did not trigger the development of the disease, or they do not carry the right sequence of noncoding DNA to activate the gene’s expression.

Genes Linked to Endometriosis

The most important thing to understand about endometriosis is that it is a polygenetic disease. That little word tells you a lot about the origins of endo: poly means multiple and genetic means, well, genes — in other words, endometriosis is influenced by more than one gene.

Unlike some other diseases, which are directly caused by mutations in a specific gene or chromosome, you don’t simply inherit one causative “endometriosis gene.” Instead, there is a complex interplay of all the polymorphisms (or genetic variants) present in your DNA that contributes to your endometriosis risk.

What Are Single Nucleotide Polymorphisms (SNPs)?

The genetic variants that contribute to the development of endometriosis are just tiny fragments of your overall genome. Over 99% of the human genome is identical in all human beings. Polymorphisms, those places where your genes vary from person to person, account for about 0.001% of human DNA.

You probably remember from your high school biology class that humans have 23 pairs of chromosomes, tightly-wound segments of DNA that encode everything from your eye color to the consistency of your earwax. Your genes are located on those chromosomes, where they’re made up of different pairs of amino acids that bond with one another. These bonds code for most of the variations in human DNA.

Variations arise from the different nucleotides — represented by A, C, G, and T — or building blocks that can pair with one another at that specific location. The “address” of that location is called a locus (plural: loci), and identifies the specific area of a gene that codes for a particular trait or disease risk. A lot of genetic research focuses on identifying the loci associated with different health conditions. Researchers do this by pinpointing the specific polymorphisms that are frequently shared by people with a disease at those loci.

Single nucleotide polymorphisms (SNPs) — pronounced “snips” — are the most common variations in human DNA, and represent a place where two people may have different nucleotides at the same locus due to genetic mutations passed down through human DNA. Many SNPs are shared by people whose ancestors originate from the same place. Geneticists have found over 100 million unique SNPs in populations across the world.

Genetic research related to endometriosis identifies SNPs that may be responsible for the development of endometriosis in some people, but not others. Where there is an SNP, there are typically three different combinations of nucleotides, or genotypes, possible for a human being. For example, if the possible nucleotides at that locus are C and T, a person can have the genotype C,C; the genotype C,T; or the genotype T,T.

What is a Risk Allele?

In genetics, each of the possible nucleotides at an SNP is referred to as an allele. The “risk allele” is the nucleotide linked to the development of a disease or trait. For example, say the above SNP codes for an increased risk of developing endometriosis. If T is the risk allele, then C,C is the “normal” genotype that does not increase endometriosis risk. Someone with the genotype C,T may or may not have an increased risk of developing endo, while someone with the genotype T,T would definitely have an increased risk of developing endo.

Whether or not you can inherit a trait or condition from a heterogenous genotype — meaning you carry one “normal” allele and one risk allele — depends on whether the trait is dominant or recessive. You probably remember learning about dominant and recessive genes in middle school, but here’s a refresher: if a trait is dominant, you only need one risk allele to develop it. If it is recessive, you need two.

Someone who carries one risk allele of a recessive trait is considered a carrier, meaning you cannot develop the condition yourself but may pass it down to your children. In order to pass a recessive trait onto your child, both parents must be carriers of at least one recessive trait, and the child must inherit two risk alleles to develop the condition.

Along with the complicated dynamics of gene expression, recessive patterns of inheritance are another reason why you might develop endo, even if no one else in your family has it. If you’re the first in your family with endometriosis, it might mean that your other family members are carriers of one or more risk alleles linked to the disease. Because you inherited two risk alleles instead of just one, you developed the recessive trait predisposing you to endo, while your other family members did not.

SNPs and Risk Alleles Associated with Endometriosis

The genetic differences across the human population arising from SNPs are small but mighty, and play an important role in who develops endometriosis (and who does not).

As an endo warrior, you don’t need me to tell you that research for our condition is drastically underfunded and underperformed. For a disease affecting 1 in 10 women, we know surprisingly little about the genetics of endometriosis. However, some recent studies have scraped the surface of identifying the reasons why some people develop endo while others do not.

By far the most influential genetic study of endometriosis was the 2012 study “Genome-wide association meta-analysis identifies new endometriosis risk loci,” published in the journal Nature Genetics. This study used a sample size of over 4,500 Japanese and European endometriosis patients to identify seven loci strongly linked to endometriosis. This study replicated the results of previous genetic research linking two of the loci to endometriosis and identified five novel loci that had not previously been identified.

The “endo genes” identified in this study are:

  • rs7521902 (risk allele A). This SNP is located on chromosome 1, on a gene called LOC105376850. Little is known about the gene beyond its well-established link to endometriosis, so it’s unclear why this SNP increases the risk of endo.
  • rs13394619 (risk allele G). This SNP is located on chromosome 2, on a gene caled GREB1. GREB1 plays an important role in coding for the proteins that bind to estrogen receptors. As a result, it plays an important role in the growth of endometriosis, as well as estrogen-dependent breast and prostate cancers.
  • rs4141819 (risk allele C). This SNP is located on chromosome 2, on a gene called LOC105374786. This SNP is linked, in particular, with Stage III and IV endometriosis involving the ovaries.
  • rs7739264 (risk allele T). This SNP is located on chromosome 6, on a gene called LOC100506885. Little is known about the gene beyond its link to endometriosis, so it’s unclear why this SNP increases the risk of endo.
  • rs12700667 (risk allele A). This SNP is located on chromosome 7, on an inter-genic region. A previous Australian study linked it with moderate-to-severe endometriosis. The Nature Genetics study linked it with endo in general, as did a 2013 replication study.
  • rs1537377 (risk allele C). This SNP is located on chromosome 9. The results of the Nature Genetics study were replicated in a 2015 study that confirmed the genome-wide significance of the SNP in conferring endometriosis risk.
  • rs10859871 (risk allele C). This SNP is located on chromosome 12, near a gene called VEZT. VEZT is a gene that encodes for a specific protein involved in the joining of cells at the membrane, which makes sense given that endometriosis is a proliferative process. This particular SNP is widely accepted as the SNP with the strongest link to endometriosis, and the results of the Nature Genetics study have been replicated many times. The A,C genotype is associated with a 1.2x higher risk of endometriosis, and the C,C genotype is associated with a 1.4x higher risk of endometriosis.

Since then, much of the research has focused on confirming the results of this genome-wide meta-anaysis, rather than identifying novel susceptibility loci for endometriosis. However, in 2017, 23andme published a study of results collected from its customers that found five new loci associated with the development of endometriosis.

The “endo genes” 23andme identified were:

  • rs1250241 (risk allele T). This SNP is located on chromosome 2, on a gene called FN1. FN1 codes for a protein called fibronectin, which is involved in cell adhesion. Certain types of fibronectin also prevent tumor growth and metastasis. This link makes sense since endometriosis is a proliferative process, and it has been surmised that genes regulating tumor growth may be defective in patients with endo.
  • rs1971256 (risk allele C). This SNP is located on chromosome 6, on an inter-genic region involving the genes RMND1 and CCDC170. RMND1 plays a role in translating messenger RNA (mRNA) into the proteins of the mitochondrial ribosome, while CCDC170 is a relatively mysterious protein-encoding gene that has been linked to breast cancer in addition to endo.
  • rs71575922 (risk allele G). This SNP is located on chromosome 6, on a gene called SYNE1. SYNE1 codes for a protein expressed in the skeletal and smooth muscle. This protein plays an especially important role in the brain, making its link to endo particularly interesting. It’s also worth noting that another 23andme study found a strong link between this gene and the development of uterine fibroids.
  • rs74491657 (risk allele G). This SNP is located on chromosome 7, on an inter-genetic band of the chromosome called 7p12. Notably, 7p12 contains the gene EGFR. EGFR stands for epidermal growth factor receptor, the protein it encodes for. EGFR activates the processes of cell growth and division, making it a logical link to endometriosis.
  • rs74485684 (risk allele T). This SNP is located on chromosome 11, near a gene called FSHB. FSHB codes for a component of follicle stimulating hormone (FSH), which plays an important role in regulating the menstrual cycle and reproductive organs. Appropriately, this SNP has also been linked to heavy menstrual flow.

What’s My Genotype?

The only definitive way to figure out your genotype is to have testing performed by a genetic counselor — but since these SNPs are correlational, not causational, for endometriosis, most doctors probably won’t suggest genetic counseling for endo.

If you are curious about your genetic risk for endometriosis, you can always take a direct-to-consumer DNA test like 23andme or Ancestry DNA. Personally, I took 23andme’s Ancestry test and skipped the Health test because it was so expensive. Instead, I downloaded the raw DNA file from 23andme and uploaded it to Promethease.

Promethease is a literature retrieval service — meaning that it won’t interpret your DNA or put you in touch with genetic counseling, but it will show you the conditions your DNA is linked to and studies that support those links. You pay $12 one time and receive lifelong access to your report, which I think is worth it.

Once you’re in Promethease, you can use the search function to type in the endometriosis SNPs above. Then, you’ll want to look at your genotype to see if you have a risk allele for endometriosis. Let me show you an example from my DNA report:

As you can see, I searched for rs10859871, the SNP most closely linked to endometriosis risk. My genotype is A,C. The risk allele is C, so my risk of endometriosis is 1.2x higher than average. However, combined with other genes that increase my risk, my overall risk of endometriosis may be much higher than this. That’s why it’s important to review more than one SNP to get a clear picture of your endo risk.

When using Promethease, I recommend completely disregarding the additional information, such as the “repute” of the gene or the SNP wiki entry it generates. Because anyone can edit the SNP wiki, it can contain a lot of misleading information — such as the retrograde menstruation theory you see above, which has since been disproven! Instead, I recommend you click on “more info” and carefully review the supporting studies linked in the wiki entry for the most accurate scientific information.

By reviewing my raw DNA, I found out that I have six genetic risk factors for endometriosis, not including the new ones discovered by 23andme. While it’s important to keep in mind that consumer DNA tests like 23andme are flawed, and that having these genes doesn’t guarantee you have endo, I think it’s incredibly fascinating to see how something as intangible as our DNA so strongly influences our reality.

What I Eat in a Day with Endometriosis

Even before I had to start paying attention to what I eat for my endometriosis, I’ve always been obsessed with food. I’m constantly fascinated by new combinations of flavors and always looking for unique new ways to eat my veggies and whole grains. Cooking and baking are two of my favorite pastimes, and I love experimenting with new recipes — often using David as my guinea pig!

When I’m not blogging, reading, or pinning new recipes to my Pinterest boards, I’m usually cooking or eating something deliciously gluten- and dairy-free. Eliminating gluten and dairy for endometriosis was something that felt incredibly intimidating and restrictive to me at first, so I turned to a lot of “What I Eat in a Day” blog posts and YouTube videos for inspiration. Soon, I found that people were enjoying variations on a lot of the same foods I love and enjoy, without experiencing an endo flare afterwards. I decided to try the gluten- and dairy-free diet for myself.

What sold me on the gluten- and dairy-free diet for endo was the way it made me feel. I used to experience endo belly every. Single. Day. Not anymore! Eliminating gluten and dairy keeps my bloating at a minimum, which means my pants still fit at the end of the day and I’m comfortable enough to stay focused throughout the workday. I’m not saying this solution is going to work for every endo babe, but I do think it’s worth trying to identify if you have a food intolerance that could be contributing to your endometriosis symptoms.

My doctors advised me to try eliminating gluten and dairy — and I recommend you consult with your own doctors before making any dietary changes yourself! You never know if you might have a deficiency or complication that would make a gluten- or dairy-free diet dangerous for you, so turn to the experts who know the human body best. That being said, I want to be a part of showing people that gluten- and dairy-free doesn’t equal a death sentence. You can still enjoy delicious foods without experiencing an endo flare — here’s how I do it!

pasta dish on white ceramic bowl

Throughout the day: I am making a conscious effort to drink more water and water-based liquids, as opposed to running solely on coffee! As a result, I always keep the fridge well-stocked with lemon Polar Seltzer, lemon or raspberry Hint water, and Health Ade Pink Lady Apple kombucha to sip on throughout the day.

9:00 AM: I start every morning with cold brew coffee from Califia Farms, alongside a full breakfast. Breakfast is my FAVORITE meal of the day — I would eat bacon and eggs all day, every day if it wouldn’t kill me — so it’s naturally one that I never skip! Lately, I’ve been loving Simply Elizabeth’s Maple + Almond Butter granola on top of some vanilla almond milk yogurt, with a side of strawberries. I also like to fry an egg over-hard with gluten-free avocado toast (my favorite GF bread is Canyon Bakehouse), or even make a green smoothie with spinach, pineapple, mango, and almond milk.

11:30 AM: For lunch, I usually am throwing together a mix of frozen veggies with protein. A lot of the time, I eat vegan by coincidence, though one of my favorite animal proteins is chicken sausage. One of my favorite lunches is a chopped and seasoned sweet potato fried up with chicken sausage and kale in a bit of olive oil. Another is sauteed cauliflower rice (I like the blends from Cascadian Farm) with a side of black beans simmered with onions and spices. Something I used to eat more of that I haven’t had since moving is sushi — we had a great local grocery store with delicious, freshly-made veggie rolls back in Cleveland (which I would dip in gluten-free tamari sauce from home). Often, I top off lunch with a cookie, like Nothin’ But’s Granola Cookies or Emmy’s Chocolate Macaroons, for just a touch of something sweet.

3:00 PM: I’m typically hungry in the afternoons, so I reach for a snack. I keep things like GoGo Squeez cinnamon applesauce packets, Skinny Pop popcorn, and single-serve packs of gluten-free pretzels (which I eat with hummus) on hand for occasions like these. I also like to bake, so sometimes I snack on dessert; recently, I made a gluten-free, dairy-free strawberry shortcake that I ate with So Delicious Coconut Whip (mmmmm….). A lot of the time, this is when I hit my afternoon slump, so I might also treat myself to an iced coffee at Dunkin’ — a medium iced coffee with extra almond milk when I’m feeling healthy; a medium iced caramel swirl with extra almond milk if I need a pick-me-up on a bad day.

5:30 PM: The earlier I wake up, the sooner I find myself ready for dinner. Lately, I’ve been ready to eat around 5:30 or 6:00 PM most days, which is early for me! I start cooking when I get hungry, which takes me anywhere from 20 minutes to an hour. I love experimenting with new recipes — some of my current favorites are coconut curried lentils and spinach, rice cooker Spanish chickpeas and rice, and, for an easy meal, a concoction I created of Banza chickpea cavatappi, Rao’s tomato herb sauce, sauteed chicken sausage, and steamed broccoli. We also make baked chicken in a Greek marinade about once a week, which we keep in the fridge for making salads or Buddha bowls.

8:30 PM: Nighttime is when I start to get snacky! I don’t follow food rules, so I let myself eat when I’m hungry, as long as it’s not so close to bedtime that I’ll get a stomachache. If I need something sweet, I like So Delicious Cookie Dough Ice Cream made with coconut milk. Or, for something savory, I might pop a bag of Skinny Pop pocorn to share with David or eat some Garden Veggie Good Thins made from rice — which are now, thankfully, gluten-free! On cold days, I usually end my day with a cup of black tea and almond milk, but those days are getting fewer and farther between now that it’s summertime.

MRI for Deep Infiltrating Endometriosis: What to Expect

When I first started this blog, I wrote a blog post about my upper endoscopy, which was a big hit with my readers. As a patient, it can be difficult to know what to expect from a procedure you’ve never had before. Many people turn to hospital websites and clinical YouTube demonstrations for answers, but these do little to assuage the anxiety about the procedure.

What always helps me is hearing from someone who’s been through it themself — which is why I’m taking the time to write about my MRI experience as an endometriosis patient. As of right now, laparoscopy is the only way to definitively diagnose endometriosis. However, a doctor might recommend an MRI if they suspect deep infiltrating endometriosis (DIE), a form of endometriosis where the endo implants deeply penetrate the healthy layer of tissue beneath.

An MRI can help doctors determine the location of endo implants to help plan for laparoscopic surgery. Because laparoscopy is both a diagnostic tool and a treatment, locating lesions ahead of time allows your surgeon to prepare, rather than flying blind. Cases of DIE are also more complex than the more common type of endometriosis, which is confined to the first 5 mm of tissue. Surgery for DIE may require careful planning. If the endo implants infiltrate nearby organs like the colon or the ureters, specialized surgeons may need to be brought in to consult on the best way to approach treatment.

Before my MRI, I had a lot of questions about what to expect. My questions weren’t just about the procedure, though — I also wanted to know what my MRI would tell my doctors about my endometriosis. After all, women are already questioned and oppressed in the medical system. I needed to learn everything I could so I could be my own best advocate for my care. At the end of the day, you know your body best, so if you’re certain something’s wrong, it’s important to keep pushing for answers.

MRI and Endometriosis

First, let’s talk about the role of MRI in diagnosing endometriosis. MRI on its own is not a diagnostic tool. The only definitive way to diagnose endometriosis is via diagnostic laparoscopy, a minimally invasive surgical procedure (known as “keyhole surgery”) in which a camera and surgical instruments can be inserted into the body through small incisions in the lower abdomen.

So, why might a doctor order an MRI for suspected endometriosis? MRI is reliable in diagnosing DIE, when endo implants exceed 5 mm in depth. DIE is found in about 20 percent of patients with endometriosis. As we mentioned previously, knowing whether or not to expect DIE — and where the DIE is located — helps your doctor prepare for surgery. MRI is also much less invasive than laparoscopic surgery, so if your endometriosis symptoms are mild, you may have an MRI and choose to hold off on surgery in the meantime.

MRI isn’t always a good choice for patients with chronic pelvic pain. When endometriosis isn’t strongly suspected, it may be ineffective, since it’s poor at identifying other causes of pelvic pain. In one study, more than half of women with chronic pelvic pain were diagnosed with unknown, or “idiopathic,” pelvic pain after a diagnostic MRI. 42 percent of patients in this study whose MRI results suggested a diagnostic laparoscopy wasn’t necessary would have benefitted from them.

MRI can reliably diagnose DIE, but falls short in identifying superficial endometriosis. (Despite this name, it’s important to remember that the depth of endometriosis lesions does not correlate with the severity of the patient’s pain.) Superficial endometriosis accounts for 80 percent of patients with the disease, making laparoscopy an essential procedure to officially diagnose or rule out endometriosis. MRI also fails to identify pelvic adhesions, or scarring, in roughly 80 percent of patients.

MRI produces few false positives, but many false negatives. As a result, many women who need care might be denied it after having a diagnostic MRI that fails to show evidence of DIE. However, MRI is superior to other forms of imaging in detecting endometriosis. Transvaginal ultrasound used to be a common tool to diagnose endometriosis, but is less effective than MRI in identifying indeterminate pelvic masses and detecting rectosigmoid endometriosis and endometriosis of the bladder. This is important, because some of the signs of endometriosis — such as irregular bleeding — overlap with those of uterine cancer. In some cases, an “indeterminate mass” may actually be a tumor, rather than an endometrial implant. Because ultrasounds are cheaper than MRIs, however, your doctor might still suggest you have an ultrasound before proceeding to MRI.

There’s only one case where MRI is superior to laparoscopy in diagnosing endometrial disease: adenomyosis. Adenomyosis is a form of endometriosis in which endometrial tissue grows into the muscle wall of the uterus. Because it exclusively affects the uterine wall and can only be seen deep inside the musculature, MRI is superior to the naked eye in detecting adenomyosis. If your symptoms suggest adenomyosis instead of or in addition to endometriosis, your doctor may suggest an MRI to rule it out.

How MRI Works

MRI stands for “magnetic resonance imaging” and uses a strong magnetic field to attract positively-charged protons in the body. In combination with different levels of radio waves, these magnetic forces produce distinct signals used to identify different pathology (or lack of pathology) in medicine.

Soft tissues like muscles, ligaments, and tendons, as opposed to bones, are well-seen on MRI. Different levels of magnetism are used to produce different images, as some organs are best seen at certain intensities. Alternatives to MRI include ultrasound and CT scans. We already explained ultrasound; as for CT scans, they aren’t generally used in the diagnosis of endometriosis and result in exposure to radiation that can become dangerous over time.

Almost anyone can safely undergo MRI. Because of the strong magnetic field used in MRI, however, people with metal implants — such as pacemakers or artificial joints — cannot have an MRI scan. People who are claustrophobic may also find MRI uncomfortable, since the scanner is a small, enclosed space. These people might opt for transvaginal ultrasound instead.

My MRI Experience

When I arrived for my MRI at the Cleveland Clinic’s main campus in downtown Cleveland, I was alone. After checking in with the receptionist, I was ushered into a separate waiting room, where I was the only patient. Another staff member spoke with me about the potential risks of the procedure, checking to make sure I hadn’t had any recent tattoos and that I had removed any metal piercings before leading me into the back to change.

During my MRI scan, I did not wear anything but a hospital gown and special matching pants. These pants were worn in the waiting room, but not during the procedure. I expect pants and underwear would have obscured the imaging, and they would have made it difficult to prepare for the next part of the procedure. After changing, I was ushered into a waiting room with several other patients, each having an MRI for a different reason. Then, finally, it was my turn.

I met with the woman operating the MRI equipment briefly before she took me into the room with the MRI machine. I took off the hospital pants and settled onto a cushioned platform, which slides into the MRI machine during imaging. She helped me get comfortable with pillows and a sheet, and provided me with two syringes of surgical lube to insert into my vagina once she left. This is supposed to help the radiologist see the vagina better in the MRI scan.

Once the radiologist left, I inserted the surgical lube. The radiologist communicated with me over a special microphone while in the other room. After I told her I was ready, she came back to adjust the magnetic plates on the machine above and below my pelvis while I lay back on the platform. This felt heavy, hard, and warm, but not painful or uncomfortable. She also gave me headphones to wear while the machine was running.

When the radiologist left and started the MRI machine, the first thing I noticed was how loud the machine was. The MRI machine makes loud banging, spinning, and clacking noises, which I admit made me feel a little nervous. If they are still loud with special soundproof headphones, I shudder to think how loud it would be without them! But the worst part was when the platform slid into the machine. The last thing she did was insert an IV tube, through which contrast would be pumped later in the scan.

Like a CT scanner, an MRI machine looks like a big tube — but instead of being a small section of a tube like modern CT scanners, it’s much longer. When you’re inside it, it feels much smaller than it looks. My heart began to race with anxiety as I began to feel the claustrophobia, but I used breathing techniques from therapy to soothe myself. I closed my eyes, focused on my breathing, and tried to relax.

The MRI itself was long — about 45 minutes of sliding back and forth in the machine, being asked to hold your breath and then exhale while the machine took pictures — which gave me plenty of time to get used to it. By the end, I wasn’t nearly as shaken as I was at the beginning of the procedure. Unfortunately, the anxiety had given way to boredom by then. If it hadn’t been so loud, I might have fallen asleep — but all I could do during the MRI was think about the small space I was in and focus on my breath. I was the radiologist’s last procedure of the day, so that might be why she didn’t play music or talk to me much during my MRI.

More than halfway through the scan, the radiologist pressed a button, allowing her to remotely inject contrast through my IV. By then, the scan was, thankfully, almost over. She only had to take a few more pictures using the contrast. Best of all, unlike the contrast used during a CT scan, it doesn’t make you feel warm or like you’re “wetting yourself.” It just feels like a normal IV.

At the end, the radiologist gave me plenty of cleansing wipes (an entire package, actually) to help me clean up the 11 mL of lube I’d had to inject before the procedure. She showed me where to retrieve my clothes and a bathroom where I could change and clean up in private. This is almost certainly TMI, but even with a thorough wiping, I still had lube dripping out until basically the next morning. It made the drive home a bit uncomfortable, to say the least — but the radiologist did offer me a couple of thick menstrual pads to help absorb some of the flow. After cleaning up, I was free to go.

I got my MRI results about two weeks later. There was a slight delay due to the fact that my MRI had been just before the New Year’s holiday and fell on a Friday. At long last, I learned from my doctor that my MRI showed no signs of DIE. Its only remarkable finding was that I had several ovarian cysts and a retroverted uterus.

My feelings upon learning this were mixed. I felt relieved that my surgery would likely not be complicated or result in bowel resectioning (my doctor previously suspected I might have bowel endo), yet disappointed that they hadn’t found anything to validate my suspected diagnosis. My doctors reassured me that they still believed I had endo and that surgery was worthwhile, but the words “no evidence of endometriosis,” written on the top of my MRI results, continue to dance through my head even today.

By now, the emotional rollercoaster of endometriosis is probably familiar to you. I can’t promise your MRI won’t bring up these uncomfortable feelings, but I can promise you that it’s not as scary as it seems.

My Favorite Endometriosis Influencers

Disclaimer: This post was sponsored by Intellifluence, a social platform that matches brands and influencers for paid and unpaid marketing campaigns. A huge thank you to Intellifluence for supporting Endo Strong!

Endometriosis is lonely. When I was in high school, one of my best friends had endometriosis — but I didn’t know I also had it until many years later. Likewise, in college, one of my friends also had endo, but I didn’t learn that she had it until after I had already moved to Cleveland.

In terms of people I could talk to about my endo, I felt utterly alone. David, my mom, and my friends were, and continue to be, supportive, but they just couldn’t “get it” the way another person with endometriosis could. That’s one of the reasons why I’ve been so public about my experiences with chronic illness. Even before I had a diagnosis, I knew I wanted others in my boat to be able to look up to me and see someone just like them.

To me, this is the power of influencers in today’s media. I didn’t go into social media marketing as a career because I wanted to promote an image of perfection or help rich, white models make even more money. I chose this path because I felt passionate about supporting people and brands with a mission to help others feel less alone.

Social media is a powerful tool that allows us to connect with people all over the world. In my own experience, this has meant being able to share my endo story with people I never would have met in real life, and commisserating over shared experiences with them when I didn’t know anyone IRL who could relate. For this reason, I am so excited to partner up with Intellifluence on this sponsored blog post!

Intellifluence is an online platform that matches influencers with campaigns through their digital “marketplace.” Influencers who are accepted to Intellifluence can apply for campaigns with brands, including paid campaigns and campaigns in exchange for free product. Belonging to Intellifluence has offered me the opportunity to make money doing what I love: raising awareness for others with endometriosis, especially those who don’t know that what they’re experiencing isn’t normal.

Being an endo influencer has also allowed me to virtually “meet” so many other incredible advocates who are speaking up about their experiences with this painful disease. So, when Intellifluence reached out to me about this sponsored post re: influencer marketing, I knew I wanted to use it to shine a spotlight on all the other incredible influencers who are doing amazing things in the endometriosis space.

The following influencers are by no means an exhaustive list of all the awesome people speaking out online about endometriosis, but they are some of my favorites. I have had the opportunity to speak to many of them online. Not only have I found their content unbelievably helpful during this trying journey toward my ultimate goal of excision surgery for endo, but I can also attest that they are genuinely wonderful people.

So, without further ado, here are some of my favorite influencers in the endometriosis space today, and more about all the incredible things they are doing for endo awareness on social media!

@endometriosisenlightened

Erika, the influencer behind @endometriosisenlightened, is on a mission to share her journey in a positive and informative way to help others with endo find their tribe. She advocates for everything from informed consent, to excision surgery, to an anti-inflammatory diet, all while sharing tidbits of her own journey with endo. Her content is both beautiful and inspiring, and I highly recommend that you check her out!

@miss.misdiagnosis

Mady created @miss.misdiagnosis along with the hashtag #bloatedandbeautiful to raise awareness for endo and a number of other chronic health conditions. She is a great resource for anyone who struggles with multiple chronic diseases in addition to their endometriosis. Much of her content focuses on shedding the stigma around endo and chronic pain conditions — for example, she also has fibromyalgia and talks openly about needing to use a mobility aid sometimes.

@endo_black

Created by Lauren Renee, Endo Black is a community for African-American women and other women of color who are affected by endometriosis. I feel it is so important that Endo Black has created this space to talk about struggles specific to the Black community that struggles with endo. Lately, Lauren has been sharing some really interesting content detailing the disparities in healthcare faced by African-American women living in the United States.

@entirelyendo

25-year-old Abi has already been through so much in her endometriosis journey, including two laparoscopic surgeries! I love that she is candid about her struggles with chronic pain due to endo and shares helpful tips and tricks she uses to manage it in her everyday life. Especially if you are based in the U.K., Abi is definitely one of the endometriosis influencers you should watch.

@itsasophslife

Soph identifies as a chronic illness warrior who struggles with both endometriosis and chronic fatigue syndrome (ME/CFS). My favorite thing about Soph’s content is how positive she stays despite her challenges with chronic illness. Her posts stress the importance of things like gratitude and self-care, and recently, how they relate to our “new normal” living in lockdown due to COVID-19.

@britneeleysen

Britnee’s account shows that it’s totally possible to not only survive, but also THRIVE with endometriosis! She is earning her PhD and doing some great advocacy for Black Lives Matter, all while making YouTube videos and posting about her endo on Instagram. I don’t know how she finds the time for it all, but I certainly find it inspiring to follow along on her journey.

@endo_hope_

Hope is something we could all use a little more of on our endo journeys — and Philippa is here to bring it to you. In addition to being a model and advocate, Philippa founded the Endo Hope support group to create community around endometriosis. On her page, she shares facts and stats to raise awareness for endo, as well as natural health insights that have helped her throughout her journey.

Taking Care of Hormonal Skin

Disclaimer: This blog post contains affiliate links, meaning I may receive a small portion of any purchases made through my blog. Thank you for supporting Endo Strong!

I don’t need to tell you that endometriosis is more than period cramps. Months after my diagnosis of suspected endo, I’m still learning all the ways endometriosis has affected my life. So many of the health problems I’ve had over my lifetime, from allergies to “IBS,” stem from my endo — and that includes skin issues.

The first time I saw a dermatologist, I was 19 and had just gotten the Liletta IUD placed for my painful periods. I didn’t know it at the time, but IUDs can cause hormonal acne. Soon after my IUD was placed, I found myself as a young adult, who had never struggled with acne as a teen, breaking out across my chin and jawline for the first time. According to my derm, hormonal changes in our 20s often lead to adult acne, but the additional hormones in the IUD appear to increase that risk.

I experienced the same thing again this year, when I started Aygestin on top of my IUD to suppress my menstrual cycle. The increased progesterone (combined with wearing a mask due to COVID) have led me to break out more than I have in years. Because I’ve long known that hormonal changes can cause acne, I wasn’t surprised. But what I was surprised to learn is that endometriosis has also been linked to my other primary skin woe: eczema.

Eczema is an inflammatory condition, much like endo. The most common cause is atopic dermatitis, a chronic flaring skin rash that’s itchy, red, and bumpy, but eczema can also be caused by contact dermatitis, an allergic reaction of the skin to things like fragrance or detergent. My eczema is something I’ve had since elementary school, but something I’ve always been embarrassed to talk about — which you know is uncharacteristic of me, since I’m always oversharing on this blog! As a child, I struggled with eczema in “normal” places, like my inner elbows and inner thighs. But as I got older, I broke out in eczema on my nipples.

For obvious reasons, this wasn’t something I wanted to talk about, even with my parents — but it terrified me. I have inverted nipples, so combined with the itchy, flaky rash, I was convinced for years I might have breast cancer. Since then, my doctors have long since reassured me that my skin condition is benign. Still, that hasn’t changed the fact that eczema affects my confidence. When I became sexually active, I became especially worried that guys would think my cracked, chafed nipples were “weird” and wouldn’t want to hook up with me. Thankfully, I’ve always been with partners who were kind and accepting toward my skin condition — but it’s definitely harder to feel sexy when you have an unsightly, uncomfortable rash on your boobs.

When I found out eczema, acne, and endometriosis were linked, I was strangely relieved. Before my diagnosis, I thought that only breastfeeding moms could get the type of eczema I experienced, and that hormonal acne simply meant that I was “PMS-ing.” When I started to learn more about endo, though, I discovered an entire community of people suffering from the skin conditions that I do, alongside the pelvic pain, digestive issues, food intolerances, and all the other problems that go along with endo.

Discovering this community meant that I wasn’t alone in these annoying, embarrassing conditions. Just as important, however, is the fact that so many people with endo have found solutions to these skin problems that work for them. Finding the endometriosis community allowed me to uncover the products, tips, and tricks I always needed, but never knew existed for my acne and my eczema. Now, I’m passing along that wisdom to you guys in this guide to caring for hormonal skin. If you suffer from a hormonal skin condition, endo-related or not, I’m right there with you. I’ve got your back — and I’m here to help you find what will work for you!

Acne

For many people, acne is inherently a hormonal condition. Some people with periods find that they break out a week or so before their period, due to the shifting hormone levels associated with the menstrual cycle. Others face hormonal conditions — like endo — that lead them to break out. For example, patients with PCOS have higher-than-usual testosterone levels, which can cause painful cystic acne. Endometriosis has also been linked to a history of severe teenage acne. Furthermore, many treatments for endo, like hormonal birth control and menstrual suppressants, can cause acne, too. So, what’s a person with endo to do?

For all things acne-related, I defer to the advice in my favorite skincare book, The Skincare Bible by Dr. Anjali Mahto. This isn’t your typical, trendy celebrity skincare manual. Dr. Mahto is a consultant dermatologist who’s struggled with cystic acne herself — and, in fact, cautions against following the latest skincare fads. Instead, she looks to studies and scientific evidence to find solutions that have a solid body of research behind them, and only recommends treatments to her patients that have been proven to work over years of study. You can get The Skincare Bible on Amazon for $13 (Kindle) or $18 (paperback) — and while I will recount some of Dr. Mahto’s words of wisdom here, I highly recommend taking the time to read the entire book.

Acne and Skincare Ingredients

Let’s talk oily skin for a sec. It’s become popular to “double-cleanse,” first with an oil cleanser followed by a water-based cleanser. Anecdotes say the oil-based cleanser binds to excess oil (a.k.a. sebum) on the face, while the water-based cleanser binds to other impurities. Double-cleansing is supposed to make your face extra squeaky-clean, but Dr. Mahto advises anyone with acne to avoid oil-based products and instead opt for those marked “non-comedogenic.” While you should note that non-comedogenic is not a guarantee that products won’t make you break out, you’re better off choosing these than those that aren’t labeled as such! If you want to try double-cleansing, Dr. Mahto suggests following your regular cleanser with a micellar water for acne-prone skin.

Many people with acne think that because their skin is oily, they can withstand a lot of harsh exfoliation. That’s simply not true. Even those with oily skin should exfoliate no more than twice per week, which includes products like masks and scrubs, as well as AHA/BHA acid peels and pads. In fact, many people with acne also have sensitive skin and break out in response to certain ingredients. If you suspect this could be you, run the products in your current skincare regime through the site CosDNA, which analyzes skincare ingredients for potential culprits of acne, irritation, and more.

Finally, I want to touch on the concept of “natural” skincare products. Natural and organic products are something I talk a lot about on this blog. I’m all about minimizing my exposure to synthetic chemicals where I can, because there’s some evidence that chemicals (such as dioxins) contribute to endometriosis. But, Dr. Mahto’s book changed my opinion on this topic somewhat. As she pointed out, everything is made from chemicals, whether natural or man-made, and what’s most important is that these ingredients have been proven safe. Along the same lines, my IUD is man-made and contains synthetic progesterone, but that doesn’t mean it hasn’t been a godsend for my endo. That being said, many of the natural and organic products recommended for treating acne (such as witch hazel) aren’t recommended by dermatologists. Botanicals, herbs, and essential oils found in these products can still irritate skin. Furthermore, the word “natural” isn’t heavily regulated, so it’s virtually meaningless as anything more than a marketing term.

Acne Treatments

Acne treatments take two forms: over-the-counter (OTC) and prescription. You can get OTC products at any drugstore, while prescription treatments require an Rx from your primary care physician (PCP) or dermatologist. It’s important to note that many topical acne treatments can cause sun sensitivity, so you should always wear a non-comedogenic sunscreen when using them and reapply throughout the day. Of course, you should always be wearing sunscreen anyways, because skin cancer is no joke.

Now, let’s talk OTC acne treatments. These come in the form of cleansers, gels, or even patches that contain key ingredients for targeting breakouts. Dr. Mahto recommends looking for ingredients like benzoyl peroxide, glycolic acid, salicylic acid, and retinoids in your skincare products. However, be wary of combining too many acne treatments at once, since this can increase the risk of sun sensitivity, dryness, and irritation. Below, I’ll break down these key ingredients so you can understand what they mean and how to use them most effectively:

  • Benzoyl peroxide is an antibacterial ingredient. Acne is frequently caused by P. acnes bacteria in the skin. Overuse can lead to dryness, so don’t skimp on the non-comedogenic moisturizer when using this product. Dr. Mahto also cautions that it could bleach hair and clothing if it comes into contact with these items.
  • Glycolic acid is an alpha-hydroxy acid (AHA) product. It is the most researched AHA with the most proven benefits. AHAs like glycolic acid exfoliate the skin by sloughing off the top layer of skin cells. They should be used no more than once or twice weekly as part of your skincare routine. If you have sensitive skin, look for a lower concentration of glycolic acid in your chemical exfoliant.
  • Salicylic acid is a beta-hydroxy acid (BHA) product. Along with AHAs, it is a potent anti-inflammatory agent and chemical exfoliant that has been proven to treat problem skin. On its own, it’s most effective for treating blackheads, rather than whiteheads or cystic acne; however, it works well in combination with benzoyl peroxide to treat acne.
  • Retinoids are some of the best proven acne treatments out there. They are vitamin A-based products that work to unclog pores. Retinoids used to only be available as a prescription topical medication, but you can now find prescription-strength retinoids in your local drugstore, thanks to Differin (which I’ll talk about more in the section about my favorite acne products!).

The other category of acne treatments is prescription-based products. Higher concentrations of OTC topical treatments are available as a prescription from your dermatologist, as are oral medications. The combination birth control pill is one option for hormonal acne, which is often used to suppress endometriosis symptoms as well. Certain brands of the pill, like Yasmin, are favored for treating acne. Other medications for acne are treated as last-resort options for stubborn cases. These options include spironolactone (only safe for use by biological females) and roaccutane. You’ll need a prescription for these from a dermatologist or PCP.

Acne and Diet

You’ve probably heard some potent acne myths about what you should and shouldn’t eat to curb breakouts. I’m here to debunk those myths — and let me start by saying that you should forget everything you’ve heard about chocolate, and eat as much as you want!

….okay, maybe not as much as you want. Chocolate itself doesn’t cause acne, but high-glycemic foods (read: foods high in sugar and low in other nutrients) are thought to contribute to breakouts in some people. You should test your individual tolerance to sugary treats to see if they are a trigger food for your skin. The same goes for dairy, which has also been linked to acne. Some docs believe this is a myth, but commercially-raised cows are often treated with growth hormones. Since hormonal imbalance is also linked to acne, it doesn’t come as a surprise that factory-farmed dairy causes breakouts in some people.

Again, diet is highly individualized. Just as in endometriosis, what triggers an acne flare in one person might be perfectly find for another. An elimination diet (conducted under the guidance of a doctor) can help you identify trigger foods for acne and endo. Over the course of a couple of weeks, you’ll eliminate one food at a time and gradually reintroduce it, observing for signs of a breakout (or endo flare) as you reintroduce the foods you eliminated. This comprehensive guide to the elimination diet from the Institute for Functional Medicine will walk you through the process and the reasons why some foods can lead to reactions in sensitive individuals.

My Favorite Acne Products

Whew, that was a lot of information! If you’re anything like me, you need to know why you’re doing something before you do it. I’m a junkie for research — but I also understand if you scrolled past the info, straight to the solutions. After all, years of struggling with acne without finding answers can leave you pretty damn exhausted. Well, look no further! I can’t guarantee these products will clear your skin, but I know that 1) they have helped improve my acne and 2) I’ve screened them all for problem ingredients via CosDNA, and no product contains ingredients with higher than a score of “2.” (The closer a score is to 5, the more likely it is to cause acne.) Here’s how I made over my skincare routine to clear my skin — don’t worry, everything in my routine is under $40!

Cleanser: Differin Daily Deep Cleanser

Differin’s cleanser was carefully formulated to treat breakouts without angering sensitive skin, which is why I use it religiously. This product is fragrance- and dye-free to reduce your risk of breakouts or irritation. Its active acne-busting ingredient is benzoyl peroxide (5% concentration), which kills P. acnes bacteria for clearer skin.

Toner: Glow Recipe Watermelon Glow PHA + BHA Pore-Tight Toner

I received this toner for free through Influenster and immediately fell in love. Its active ingredients are polyhydroxy acid (PHA) and beta-hydroxy acid (BHA), two potent exfoliants. The toner also contains hyaluronic acid, an anti-aging ingredient. Glow Recipe’s product is safe for everyday use and derives many of its ingredients from natural sources.

Serum: Mad Hippie Vitamin A Serum

The magazine I used to work at turned me onto this gem of a product from Mad Hippie. A vitamin A serum is a must-have step in your routine if you are looking to fight early signs of aging without clogging your pores. Many experts say starting early is key to preventing aging and sun damage, so it’s never too soon to take care of your skin! This serum contains HPR, a unique retinol alternative. Mad Hippie is currently donating $1 of every sale to the BLM movement — and always donates $1 of every purchase to conservation efforts.

Mask: LUSH Mask of Magnaminty

As Dr. Mahto attests in her book, exfoliation plays a huge part in clearing up acne. Oily skin should be exfoliated once or twice a week, with either an acid or a mask. I like to alternate an acid with the Mask of Magnaminty, hand-crafted by LUSH. This minty-fresh mask cools and soothes red, inflamed skin, while pieces of crushed adzuki beans exfoliate your skin as you slather on this mask.

Acid: The Ordinary AHA 30% + BHA 2% Peeling Solution

The Ordinary has become a cult favorite for both its affordability and its high-quality product line. This AHA and BHA peeling solution is derm-grade, containing glycolic acid, lactic acid, and salicylic acid to slough off dead skin cells and reveal the glowing clear skin beneath. Be sure to use this no more than once a week, and to always use sun protection when treating skin with acid solutions.

Spot treatment: Differin Adapalene Gel

Differin revolutionized the skincare game when they produced the first OTC prescription-strength retinoid. Before this, the strongest blemish busters available were Clean & Clear and Clearasil. Now, you can get 0.1% adapalene gel — a drying and clearing agent applied to breakouts — at your local drugstore for under $20. A little goes a long way when spot-treating, so one tube of Differin will last you a long time. Just make sure to use sunscreen when applying a retinoid, and not to combine it with AHA or BHA products in the same routine!

Moisturizer: Simple Water Boost Hydrating Gel Cream

Simple Kind to Skin makes this lightweight hydrating gel cream. Those of us with oily skin often overlook moisturizer, thinking the oils in our skin will keep our skin soft and supple — but what we don’t think about is that many acne treatments are drying and strip the skin of essential moisture. Dry skin ages faster, so slather on some of this gel-based moisturizer after every cleanse to replenish skin without problem ingredients.

Sunscreen: Coola Classic Face Sunscreen

Coola’s face sunscreen is a classic for a reason: it contains SPF 50 (you need, at minimum, SPF 30), protects from both UVA and UVB rays, and doesn’t use harsh chemical ingredients. You always, always, ALWAYS need SPF, no matter the weather — to protect from skin cancer, yes, but also if you are using acne treatments like retinoids and AHA/BHA acids, which make the skin prone to sun sensitivity. Fragrance-free products like Coola’s original unscented face sunscreen are best for acne-prone skin, though I admit that I love and use the white tea scent!

Foundation: Pacifica Alight Multi-Mineral BB Cream

Good skin habits don’t end at skincare. Your skin is the largest, more porous organ in your body. As a highly absorbent surface, your skin will soak in anything you put on it — including makeup. That’s why it’s critical to choose a foundation that’s lightweight and non-comedogenic. Pacifica’s Alight Multi-Mineral BB Cream is vegan, provides light coverage, and contains special minerals that adjust to your skintone. (This definitely works best on fair skin, so if you have darker skin, I would recommend a different BB cream with a wider shade range, such as the Glossier Perfecting Skin Tint.)

Eczema

Like acne, eczema is a skin condition that produces reddened, inflamed patches of skin. While acne is caused by pores clogged by P. acnes bacteria, however, eczema is linked to an over-active immune system. People with eczema typically have a genetic predisposition for the condition. Some people have a specific mutation affecting the skin protein filaggrin, which makes up the top layer of our skin. Filaggrin forms a protective barrier to keep foreign particles and bacteria away. Changes in this barrier protein may lead to hypersensitivity to allergens and hormones, among other triggers that cause acne flares.

The National Eczema Association (NEA) has been invaluable to me in navigating my skin journey. Their NEA Seal of Acceptance (SOA) program marks products as safe for people with eczema. By “safe,” I mean free of potential triggers, like fragrances or dyes. Anything from the wet wipes you use on your hands, to the moisturizer you put on your face, to the laundry detergent you wash your clothes with could be responsible for an eczema flare. That’s why I stick to SOA products whenever possible, especially when those products come into contact with affected areas.

What Causes Eczema?

As in acne breakouts, eczema flares are often linked to specific triggers, one of which can be changes in our hormones. People may have eczema when they get stressed, which leads to the release of the stress hormone cortisol. Or, the body may respond to changes in hormones throughout the menstrual cycle, resulting in eczema only at certain times of the month. Since eczema affects the immune system as well as the endocrine system, it’s no wonder that people with endometriosis are more likely to suffer from it.

Many other triggers of eczema are environmental. This also makes sense, as people with endometriosis appear to be more sensitive to allergens than people without it. Common eczema triggers include nickel allergy, fragrance, soap, antibiotic ointment, and other personal care products, like wipes and lotions. Dry skin is also more prone to developing an eczema flare. As a result, you may experience more eczema in the winter months. Alternatively, some people experience eczema in response to heat and humidity during the summertime. Whatever the cause of your eczema, it’s important to understand your triggers to control an eczema flare and cease the discomfort.

Eczema Treatments

Avoiding triggers is the best way to control an eczema flare. That being said, treatments can also take the form of topical creams or ointments, as well as oral medications. Like acne treatments, you can get eczema treatments OTC or via prescription from a PCP or dermatologist. Topical agents are available both OTC and by Rx, while oral medications will require a prescription to get. In general, the treatments available OTC are weaker than those prescribed by a doctor, so you may want to make an appointment with your PCP or a dermatologist if you have a severe case of eczema.

Most topical agents used to treat eczema are either emollients or steroids. An emoillient is an intense, hydrating moisturizer, while steroids are medications that fight inflammation by blocking the production of certain substances. Corticosteroids, available as an OTC treatment for eczema in the form of 1% hydrocortisone cream, are the first line of defense. These drugs mimic the hormone cortisol and inhibit the immune system processes that trigger inflammation. Hydrocortisone is safe to apply up to four times a day to the affected area(s). Other, stronger corticosteroids are available as an Rx from your doctor, as are nonsteroidal topicals like topical calcineurin inhibitors (TCIs) and PDE4 inhibitors.

Your doctor may consider prescribing oral medications for severe cases of eczema that do not respond to topical agents. Doctors can prescribe immunosuppressants, which suppress the immune system (thought to be involved in the production of eczema), or biologics, which use human DNA to block chemicals called interleukins that promote inflammation. These are the same medications used to treat many autoimmune diseases, like inflammatory bowel disease or lupus. If you begin taking these medications, you may need to take extra precautions (especially during COVID-19), as they weaken your immune system and may make you more likely to get sick.

My Favorite Eczema Products

Before we get into talking about my favorite eczema products, I should clarify that while I have a very specific type of eczema, all of these products are suitable for anyone with eczema. Most of these products can be used anywhere on the body. That being said, everyone’s eczema is different. You should always make sure to check in with your doctor before changing your routine — especially if you’re taking other prescription medications that could interfere with the ingredients in these eczema products.

Emollient: 100% Pure Petroleum Jelly

It’s a classic for a reason! Vaseline, or 100% pure petroleum jelly (no need to buy brand-name if you’re on a budget), protects soothed and chapped skin while posing little risk of irritation. In other words, it’s an emollient that hydrates and protects from further damage to eczema-prone skin. As long as the brand you’re using contains no additional ingredients, this product is safe for external use just about anywhere on the body where eczema is present. The only downside is that petroleum jelly is a byproduct of oil, meaning it poses a significant burden to the environment.

Emollient: 100% Pure Lanolin

While this calls itself a nipple protectant for new moms, don’t be deterred by the packaging: 100% lanolin is a powerful emollient that’s safe for use anywhere on the body. The fact that it’s used by breastfeeding moms is a testament to its safety. After all, if it’s safe for baby’s mouth, then it’s sure as heck safe for your skin! Plus, it’s a more eco-friendly alternative to petroleum jelly, as it doesn’t rely on byproducts from Big Oil to get the job done. Like Vaseline, apply a thin layer of this product to affected areas after cleansing to soothe and protect damaged skin.

OTC treatment: 1% Hydrocortisone Cream

OTC hydrocortisone cream is the first line of defense for eczema. Many mild-to-moderate cases respond well to this treatment, which is amazing considering how affordable it is compared to its prescription-only equivalents. One tube of 1% hydrocortisone will set you back $5 or less at most drugstores or supermarkets and lasts for weeks. After cleansing, apply a thin layer of hydrocortisone cream to affected areas to nip itching and redness in the bud. Follow up with an emollient like petroleum jelly or lanolin for an extra round of protection.

Body wash: Cetaphil Pro Soothing Wash

As I mentioned previously, treating eczema on its own isn’t enough. You also need to remove triggers, which often include personal care products like body wash, lotion, and makeup. Usually it’s ingredients in these products, not the products themselves, that cause problems for eczema-prone skin. That’s why I love this Cetaphil body wash: it contains no fragrance or irritating ingredients, and even includes a fillagrin complex to protect your skin and help it retain moisture. This product bears the NEA’s SOA, meaning you can count on it as clinically proven not to induce eczema flares in affected patients. Best of all, it’s available at your local drugstore!

Moisturizer: CeraVe Moisturizing Cream

For many of us, dry skin triggers an eczema flare. We often think of dryness as a winter problem, but our skin needs to be protected and hydrated all year round. CeraVe’s Moisturizing Cream is a powerful moisturizer for the whole body, from hands to face to feet, that’s free of fragrance or irritating ingredients. It’s hypoallergenic and certified by the NEA’s SOA program, and contains soothing and hydrating agents like hyaluronic acid and ceramides to keep your skin supple and soft.

Detergent: All Free and Clear Detergent

One thing I never realized could be contributing to my eczema was the detergent I used in my washing machine. I didn’t think it mattered much what I used on my clothes, but in fact, irritating ingredients from detergent and dryer sheets can rub off on your skin and cause an eczema flare. For me, this means I pay extra special attention to what I use to wash my clothes. I exclusively use All’s Free and Clear Detergent, which bears the NEA’s SOA and contains no fragrance or irritating ingredients, on all of my clothing. Even though my eczema is confined to one area of my body, I know that eczema-prone skin can break out anywhere when exposed to a trigger, so I try my best to contain it by watching what I use on my clothing.

Dryer product: Babyganics Natural Wool Dryer Balls

Likewise, it also matters what you put in your dryer. I skip the fabric softener and dryer sheets altogether, opting instead for natural wool dryer balls. These dryer balls are made from 100% wool, with no bleach or dye. I trust the Babyganics brand because it’s safe for infants, meaning the manufacturers pay close attention to the allergenic potential of their ingredients. If it’s good enough for moms, who are fiercely protective of their children, then it’s good enough for me and my sensitive skin. In fact, even if you don’t have eczema, there are benefits to switching to wool dryer balls: they can be reused for 2-5 years, depending on how much laundry you do (they last up to 1,000 loads), meaning you save money and keep disposable dryer products out of our landfills.

Endometriosis and Seasonal Allergies

Now that it’s officially spring, a-choo! is the only sound you’ll be hearing from me ’til October. Like more than 50 million Americans, I have allergies — and this time of year, allergens like grass, ragweed, and pollen are flourishing, leaving my eyes, nose, and throat red, raw, and itchy.

What we call “seasonal allergies” are technically a medical condition called allergic rhinitis. Rhinitis means “inflammation of the nose,” referring to the effect environmental allergens have on the body. When the nose is inflamed, it produces more mucus, which can drip down the back of the throat to cause irritation via postnasal drip. The body reacts to this inflammation by releasing chemicals called histamines, which is why you might hear OTC medications like Claritin and Zyrtec referred to as “anti-histamines.”

“But Haley,” you might be wondering, “what does that have to do with endometriosis?” Well, what I didn’t know until I was diagnosed with suspected endo is that my allergic rhinitis and endometriosis may be linked. According to a study published in the Journal of Obstetrics and Gynaecology, people with endometriosis are significantly more likely to report a family history of allergies.

In a previous post, I explored why endometriosis isn’t an autoimmune disease, but established that it still affects the immune system. You can head to that link for greater detail, but basically, certain immune-mediating cells — like T-cells and white blood cells — don’t function properly in patients with endometriosis. Similarly, allergies are also not autoimmune, but characterized by immune system dysfunction. When someone has allergies, their body overproduces an antibody called immunoglobulin E (IgE), leading to symptoms like sneezing, itching, and swelling.

Because I live with both endometriosis and allergic rhinitis, I know that seasonal allergies can significantly affect your quality of life — especially during a pandemic. More than once, I’ve woke up panicking because my throat hurt, only to remember that “oh yeah, it’s that time of year again.” With that in mind, I’ve decided to delve a little deeper into life with seasonal allergies and how I manage my symptoms on a daily basis.

Facts About Seasonal Allergies

Allergic rhinitis, also called “hay fever,” affects 20 million adults and 6.1 million children in the United States. Though seasonal allergies are a common cause of it, allergic rhinitis doesn’t have to occur exclusively in the summer or fall. This condition can also be caused by exposure to allergens present year-round, called perennial allergic rhinitis, or by the common cold, called infectious rhinitis.

Patients with endometriosis are considered a high-risk population for allergic rhinitis, owing to the heightened inflammatory reaction and decreased immune response associated with the condition. Two early studies found increased rates of allergic conditions such as hay fever, eczema, food sensitivities, and allergic reactions among people with endo. Patients in these studies self-reported their symptoms. Later studies confirmed these findings via allergy testing (a.k.a. “prick testing”).

Seasonal allergies are usually triggered by plant pollen, whether one type of pollen or a combination or several types. Common culprits include:

  • Tree pollen, which begins early in the year.
  • Grass pollen, which peaks during spring and summer.
  • Ragweed pollen, which is the most common cause of fall allergies.
  • Mold, which thrives during a rainy spring and can last through late fall.

Different allergens emerge under different conditions, which is why it’s critical to understand which allergen is causing your symptoms. Tree, grass, and ragweed pollen flourish on cool nights and warm days, while mold grows best in hot, humid conditions. Windy days allow allergens to spread faster, which may trigger an increase in symptoms. Additionally, pollen counts are often highest in the morning, so some people’s allergy symptoms may improve over the course of the day.

Living with Seasonal Allergies and Endometriosis

Living with seasonal allergies in addition to endometriosis can be frustrating. After all, endo already substantially limits one’s quality of life. Pain often prevents me from moving and distracts me from work or hobbies; gastrointestinal symptoms keep me tied to locations close to a bathroom…. the list goes on and on.

Allergic rhinitis only adds more concerns to that list. I have to remember to take my allergy medication every morning from spring until fall, or else become reduced to a sneezing, scratching, swollen wreck. Even then, antihistamines aren’t always enough to take the edge off — or keep it off.

So, what’s a girl to do? As usual, my solution to this problem was to conduct extensive research on the web — and here’s what I found:

  • Request a skin prick. A quick, inexpensive way for your doctor to detect allergens you may be sensitive to is via skin prick test. These tests, performed by a skilled allergist, can detect up to 50 potential allergens at once. An allergist will inject tiny amounts of many potential allergens into your forearm, which allows them to replicate a controlled allergic response, and observe for swelling. This can be performed to determine which seasonal allergen may be causing your symptoms, or to ensure you aren’t confusing seasonal allergies with something more serious, such as a food or drug allergy. However, it’s important to note that as much as 60 percent of all skin pricks show false positive results, indicating you may have an allergy when in fact you do not.
  • Track your allergies. The antihistamine brand Zyrtec offers a free AllergyCast app that can be accessed online or downloaded in the App Store. If you download the iPhone app, you can also track your allergy symptoms, and the app will analyze which pollens are most prominent on your worst days. This can help you identify your specific allergens and better predict when you may suffer from seasonal allergies, as many allergens peak during specific times of year.
  • Understand OTC options. Over-the-counter products are just as effective as prescription allergy medications, but only if you use the right one for you. Certain products are better at relieving some symptoms than others. Oral histamines relieve sneezing, itching, watery eyes, and a runny nose, while nasal sprays like Flonase can target congestion and sneezing in addition to these symptoms. Pseudephedrine (Sudafed) may also relieve a stuffy nose. Just check with your doc to make sure you’re not mixing medications that aren’t compatible.
  • Use a certified air purifier. Many allergens are airborne. If you suffer from seasonal allergies, an air purifier can provide some relief as part of a multifaceted approach to allergy reduction. The Asthma & Allergy Certification Program is a great resource, as it uses strict standards to ensure its products maintain an appropriate level of airborne allergens. These options are expensive, so I would only consider them if you have severe allergic rhinitis.

The Best Packaged Foods for the Endo Diet

“Packaged foods” and “endo diet” seem like complete antonyms — after all, eating for endometriosis means focusing on plant-based whole foods and minimizing processed goods. But in the modern world, let’s face it: packaged foods are just a fact of life. For endometriosis, it’s important to eat whole foods like fruits, vegetables and whole grains, but sometimes, eating quickly or on-the-go takes priority over optimum health.

Even so, I don’t think eating packaged foods means resigning to symptoms. In today’s grocery stores, there are plenty of gluten-free, dairy-free packaged options with (mostly) whole ingredients that won’t trigger your endo. Still, it can be difficult to know where to find these foods if you aren’t used to eating on the endo diet. Skipping meals to manage symptoms is NOT an option, so it’s important to have go-to snacks and meals you can count on in a pinch.

To help you get started, I compiled this list of packaged and pre-made foods that are convenient and delicious, yet don’t trigger my endo symptoms. Remember: everyone is different, so you may still struggle with some of these foods even though I can tolerate them just fine. The best way to learn what does and doesn’t work for you is through trial and error. However, this list avoids common triggers for people with endometriosis, such as gluten and dairy, as a starting point for building a healthier, happier diet!

On-the-Go

Whether you’re road tripping or running errands all day, sometimes you don’t have the time to stop at home for a snack or meal as you’re rushing from point A to point B. That’s why I always make it a point to know where I can stop to get my fix without triggering symptoms when I’m running around. This shortlist of snacks can be found at almost any convenience store to tide you over until your next stop:

  • Banana + Justin’s nut butter. Admittedly, it can be tricky to find fresh produce at a truck stop or convenience store — but in my experience, bananas are pretty universal. To make this snack more substantial, add some protein with a packet of Justin’s nut butter (varieties include almond, peanut or chocolate hazelnut), which can be found at many gas stations.
  • Bob’s Red Mill oatmeal cup. Bob’s Red Mill makes many amazing gluten-free products, including their oatmeal cups, which are rich in fiber due to their inclusion of flax and chia seeds. Many gas stations have hot water for brewing tea or microwaves you can use to make your oatmeal free of charge.
  • Rice Chex or Cheerios with dairy-free milk. You can usually find individually packaged cereal cups in convenience stores. Mainstream cereals like Rice Chex and Honey Nut Cheerios happen to be gluten-free. Pair with an individual bottle of soy or almond milk to make it a substantial snack.
  • Larabar or The Gluten Free Bar. Bars can tide you over in a pinch when you just need something small to get you through a hunger pang. The Gluten Free Bar’s Dark Chocolate + Coconut and Larabar’s Coconut Chocolate Chip (sensing a theme here?) are my favorite flavors, but they come in varieties for every palate.
  • Boom Chicka Pop kettle corn. Popcorn is a healthy whole-grain snack that’s packed with fiber to keep you full — but finding packaged popcorn that doesn’t include butter or some suspicious cheese-flavored dust can be a challenge. Boom Chicka Pop’s kettle corn is the perfect balance of salty and sweet that makes snacktime a breeze on-the-go.
  • Mini rice cakes. Rice cakes are a must-have snack for anyone who is gluten-free. Skinny Pop and Quaker both make mini rice crisps in delicious dairy-free flavors, such as caramel and sea salt. If you’re lucky, you might even be able to find my old college favorite, mini rice cakes dipped in dark chocolate. Mmm!
  • Roasted unsalted nuts. Nuts are packed with protein and healthy fats to keep you full when you’re in a hurry. You can pick up a package of roasted unsalted (or low-sodium) almonds, cashews or peanuts at most convenience stores. (There’s nothing wrong with a little salt, but too much can leave you with a bad case of endo belly.) These to-go packs of nuts tend to be pre-portioned for perfect snacking.

Ready-Made Meals

Most days, I try to cook for myself, since eating frozen or delivered meals tends to make me painfully bloated. But as we all know, there is always the odd day out when we need a fast dinner before rushing toward our next commitment. In preparation for those days, I like to stock up on some of these ready-made gluten-free, dairy-free options that won’t make my endo flare:

  • Trader Joe’s Organic Acai Bowl. Trader Joe’s is a haven for all the endo babes out there. They make products that cater to every diet, and their organic acai bowl is no exception. This frozen meal makes the perfect breakfast or lunch and can be easily defrosted with a few seconds in the microwave. It even comes with strawberry slices and coconut granola on top for added fiber and crunch.
  • Daiya Meatless Pepperoni Pizza. Pizza may not be the healthiest choice, but sometimes you just need to devour something cheesy and delicious! Daiya’s Meatless Pepperoni Pizza is gluten-free and vegan to satisfy all your cravings without making you ill. I’m not actually vegan myself, but I’ll be the first to admit that Daiya’s meatless pepperoni and soy cheeze are spot-on imitations of the real thing.
  • Amy’s Rice Macaroni and Cheeze. Amy’s makes tons of delicious gluten-free frozen meals, but the rice macaroni and cheeze is a personal favorite. Mac ‘n’ cheese is my favorite comfort food, but often leaves me bloated with endo belly. This version uses rice noodles and Daiya’s vegan cheddar cheeze for a creamy, satsifying take on an old classic.
  • Dr. McDougall’s Pad Thai Noodle Soup. I discovered this quick and easy meal choice in college among our convenience store’s selection of ramen noodles. This vegan pad thai noodle soup is pre-packaged, fast and easy to make (just add boiling water and wait!) and tastes delicious. Better yet, it contains only a few simple ingredients that you can pronounce, so you can feel good about what you’re putting into your body.
  • Dr. Praeger’s Black Bean Quinoa Veggie Burger. There’s nothing better than throwing a veggie burger on the griddle at the end of a long day, am I right? Maybe I’m just weird, but there’s something so satisfying about Dr. Praeger’s black bean and quinoa burgers that’s even better than the real thing. This brand makes tons of veggie burgers for every taste, but I like these for their spicy kick. My pro-tip? Top with smashed avocado and lime for a taste of the Southwest!
  • Seeds of Change Quinoa and Brown Rice. I always keep Seeds of Change Organic Quinoa and Brown Rice packets in my cupboard for emergencies. When I really need to hustle, these cook in the microwave in just 90 seconds. With olive oil and garlic, they offer healthy fiber, fats and whole grains. Pair a serving of this with some salad or frozen veggies and you get a quick lunch or dinner that will hold you over whenever you’re in a rush.

Fast Food

For obvious reasons, fast food isn’t ideal on the endo diet — but as someone in eating disorder recovery, I firmly believe that eating fast food is always better than skipping a meal. Thankfully, options are improving at many mainstream fast food chains, making it easier than ever to order something that won’t trigger an endo flare. Here are some of my go-to orders at my favorite fast food restaurants when I’m running around on-the-go:

  • Starbucks: Iced Coconut Milk Cascara Latte and Blueberry Oatmeal. Almost any coffee choice can be customized at Starbucks to fit the endo diet, but the iced coconut milk cascara latte has become a recent favorite of mine. This drink is made with Starbucks’ blonde roast, poured over ice, with coconut milk and cascara sugar sprinkled on top. It’s lower in sugar than drinks containing flavored syrups, but still has that hint of sweetness I love! For snacking, the blueberry oatmeal is jam-packed with healthy fiber (and fats, if you add the nuts on top) to keep you full longer. Just skip the brown sugar packet — and if you need some extra sweetness, opt for the agave instead.
  • Chipotle: Brown Rice Chicken Burrito Bowl. I could practically write a love letter to Chipotle, but that’s a blog post for another time. Instead, let me tell you about my favorite burrito bowl to order at Chipotle. I always opt for brown rice to sneak in a serving of whole grains, then top with chicken, plenty of veggies and a heaping spoonful of guac. The fajita veggies, corn salsa, pico de gallo and romaine lettuce are all delicious, fresh options to add a little color to your bowl — and, of course, extra vitamins to your bod.
  • Panera: Chicken Tortilla Soup and Side Salad. Panera is best known for its bread and mac ‘n’ cheese, so you might not think of it as a gluten-free haven. However, their grain bowls and some of their soups are great options for eating GF on-the-go. The chicken tortilla soup makes a delicious dairy-free lunch or dinner on the go. Choose a You-Pick-Two combo with any side salad (minus the cheese) to sneak in extra veggies and keep yourself fuller for longer.
  • Shake Shack: Burger with Gluten-Free Bun. Shake Shack is a not-so-guilty pleasure of mine! When you’re gluten-free and dairy-free, this burger joint might not seem like your new favorite fast food restaurant, but unlike most, Shake Shack actually carries a gluten-free bun (rather than offering you a sad, wilted lettuce wrap for your patty). To keep it gluten- and dairy-free, skip the Shack Sauce and cheese and instead load up on lettuce, onion and tomato, adding ketchup or mustard if you need a little extra flavor.
  • Blaze Pizza: Gluten-Free Build-Your-Own Pizza with Daiya Cheeze. Blaze Pizza was a cult favorite on campus at Boston University. Even Lebron James owns stock in them! This fast-fired pizza chain is rapidly spreading around the U.S. — and if you’re lucky to have one nearby, it’s also a great place to eat gluten- and dairy-free. Blaze carries Daiya cheeze and a gluten-free crust. If avoiding dairy, choose spicy or regular red sauce and top with your favorite gluten-free meats and veggies for a hearty meal that doesn’t skimp on flavor. They’ll even do a glove-change for you if you have celiac or prefer to be extra-careful about your GF diet!
  • Sweetgreen: Build-Your-Own Salad or Warm Bowl. Of all the places I miss from my time in Boston, Sweetgreen might be my most beloved. This build-your-own salad place has locations around the Northeast, as well as the Pacific Coast. As you can imagine, it’s a wonderful place to load up on veggies and gluten-free whole grains. They even make a variety of flavorful dairy-free and vegan salad dressings in-house to add some extra zing to your salad or grain bowl. Just make sure you avoid options that might trigger a flare, such as cheese or the za’atar breadcrumbs, when building your bowl.
  • + BONUS: The Find Me Gluten-Free App! I wouldn’t want you to miss out on local fast casual options that carry gluten-free and dairy-free options — of which my home city, Cleveland, Ohio, has many! For that reason, I also suggest you download the Find Me Gluten-Free app. It’s free in the App Store and allows you to use location services to track down a gluten-free restaurant near you, as well as to view menu options and reviews from real-life gluten-free eaters. If you have celiac disease, I especially recommend downloading this app, as it allows you to view ratings on the restaurant’s risk of cross-contamination.

Is Endometriosis an Autoimmune Disease?

I still remember how confused I felt when I first started delving into the literature of endometriosis: people with endometriosis suffer from systemic inflammation and have a high incidence of food allergies, yet endo still isn’t considered an autoimmune disease in the conventional sense? What does that mean?!

Studies suggest that endometriosis often coexists with autoimmune diseases like celiac and lupus, but doctors have yet to classify it as an autoimmune disease in its own right. Admittedly, we have a limited understanding of the disease process of endometriosis, thanks to chronic underfunding from the National Institutes of Health. Still, the short answer is technically no: endometriosis is NOT considered an autoimmune disease…. right now.

I include the qualifier because there is mounting evidence that the immune system is involved in endometriosis. We don’t understand exactly how or to what extent, but the involvement is there. Still, as I started to read these things when I was first diagnosed with suspected endo, I only found myself getting more confused.

I was confused not just by what we don’t know about endo, but also by the clear disagreement within different communities of doctors about what endo really is. Some people swear it’s not an autoimmune disease, clinging to the old explanation of retrograde menstruation — while others insist that the possibility of autoimmunity should be explored further and demand more extensive research into the disease.

Now that I’ve talked to so many people with endo, and learned so much more about the disease, I thankfully have a better understanding of the issue of autoimmunity in endometriosis. So, I sat down to write this post for any newly diagnosed patients who might find themselves as confused as I once was.

Despite how much we don’t know, there’s a wealth of information about endometriosis — but it can be difficult to find and comprehend if you don’t know what you’re looking for. Thus, I’ve combed through all the research for you to write the post I wish I had when I was first diagnosed with suspected endo. So, without further ado, here’s everything we know, to date, on endometriosis and autoimmunity….

What Endometriosis Isn’t: Retrograde Menstruation Theory

Let’s start by debunking some important myths about endo. Endometriosis may or may not be an autoimmune disease, but we definitely know what it isn’t — and endo isn’t due to retrograde menstruation, as researchers once thought.

Sampson’s theory of retrograde menstruation is the scientific community’s lazy and outdated explanation for why endo exists. People who accept retrograde menstruation as gospel are, in my opinion, the reason why endometriosis research doesn’t receive enough funding or attention as-is. But what exactly does “retrograde menstruation” mean?

The short explanation is that retrograde menstruation refers to the backwards flow of menstrual blood during your period. Sampson believed that this menstrual blood carries uterine tissue up through the uterus, into the fallopian tubes, into the ovaries and the pelvic cavitiy. There, the tissue implants and begins to grow and bleed, leading to the development of endometriosis.

Logically, it makes sense — but here’s why it’s NOT the true cause of endometriosis: all people with periods have retrograde menstruation, but not all people with periods have endo. The body’s natural waste mechanisms take care of the fluid and tissue from retrograde menstruation, preventing it from causing symptoms. Many surgeons believe that if endo was caused by retrograde menstruation, it would not require excision surgery to remove — yet that is clearly not the case today.

Another reason why the retrograde menstruation theory doesn’t make sense has to do with the nature of the endometriosis implants themselves. The tissue found outside the uterus in women with endo is similar to the tissue that makes up the uterine lining, but it is not identical. In other words, this tissue can’t have come from period blood; if so, it would not have any discernable difference from the tissue of the uterine lining that we shed each month.

Furthermore, endometriosis implants appear to grow long before a biological female starts their first period. Research has discovered a number of cases of what is called “fetal endometriosis,” in which babies who are still in the womb appear to have endometrial implants suggestive of the disease. Obviously, fetuses do not menstruate — so if endometriosis was truly due to retrograde menstruation, it would not be possible for babies to have endo. Yet they do.

What Endometriosis Is: Endo and the Immune System

We’ve learned so much more about endometriosis since Sampson first developed his theory, with many facts contradicting the idea of retrograde menstruation. So, if endometriosis isn’t due to retrograde menstruation, what causes it? The problem is that, well, we don’t know.

I can’t tell you for certain what causes endometriosis (nor can anyone — so, be skeptical of anybody who claims to have all the answers!), but I can tell you what we know about it so far to help you put together your own thoughts and ideas about what endo really is. Here’s what we know:

Endo is an inflammatory disease.

If there’s anything I can tell you with confidence, it is that endometriosis leads to inflammation in the body. Any person with endo can attest to the role inflammation plays in their everyday lives. From crippling fatigue to chronic pain, the endometriosis experience clearly suggests that inflammation is at play.

But don’t just take my word for it: doctors agree with the observation that inflammation plays a role in the pathogenesis (read: the way a disease develops) of endometriosis. The body develops inflammation in response to endometrial implants in the pelvis. Our bodies know those implants aren’t supposed to be there, and inflammation is the immune system’s way of protecting itself.

Endometrial tissue also produces estrogen. Estrogen dominance is, therefore, probably not a cause of endometriosis, but, most likely, a result. Because these lesions produce so much estrogen, however, excess hormones in the pelvis trigger further inflammation. The role of hormones in mediating inflammation due to endometriosis explains why palliative treatments like oral contraceptives appear to soothe the symptoms of endo.

Patients with endo are more prone to autoimmune disease and allergies.

We don’t know for certain that endometriosis is an autoimmune disease, but we do know that people with endo tend to have more autoimmune diseases than the general population. People with endometriosis are at higher risk of autoimmune conditions like lupus, multiple sclerosis, inflammatory bowel disease, celiac disease, and more. They are also more likely to develop immune-mediated allergies to foods, medications, and the environment, as well as asthma.

This shouldn’t be read as clear evidence that endometriosis is due to autoimmunity. In fact, current studies fall short of proving that endometriosis is an autoimmune disease. However, researchers know that people with one autoimmune disease are more prone to developing another. In a condition known as polyimmunity or multiple autoimmune syndrome, one-fourth of people with autoimmune diseases will go on to be diagnosed with another autoimmune disorder.

The fact that people with endometriosis are more likely to have at least one autoimmune disease should be read as correlation, not causation. Still, this initial evidence is promising for those who believe endometriosis has links to autoimmunity. If people with autoimmune diseases are more likely to develop another, this could be the sign we have been waiting for that endometriosis is more than the backwards flow of period blood, after all.

Endo shares pathogenicity with autoimmune diseases.

What limited understanding we do have of the pathogenicity, or disease process, of endometriosis bears similarities to that of many autoimmune diseases. A novel 2018 study found that many cells with immune functions play a role in the development and progression of endometriosis. Examples include:

  • T-cells, which kill infected host cells and regulate the immune response. An imbalance of the types of T-cells in the body appears to stimulate the production of inflammatory cytokines, which tell the body to target immune cells and produce a specific response.
  • Neutrophils found in the peritonial lining of the pelvis, which are the most common type of white blood cell in the body. They appear to secrete biochemicals that allow endometrial growth and invasion.
  • Macrophages, white blood cells that ingest foreign bodies, can be found in large amounts at sites of infection. Even so, they seem to be ineffective in eliminating endometrial tissue from the pelvic cavity, suggesting some dysregulation in the immune system.

The behavior of these cells mimics that found in many autoimmune diseases. For example, in rheumatoid arthritis, the function of T-cells is also severely impaired, leading to chronic inflammation.

What’s more unique is the behavior of white blood cells (WBCs) in endometriosis. In most autoimmune conditions, WBCs like neutrophils and macrophages mistake healthy cells for dangerous ones and attack them. In endometriosis, WBCs appear to be unable to attack endometrial implants, suggesting immune dysfunction but not autoimmunity.

There is an emerging link between bacteria and endometriosis.

Immune cells may behave uniquely in endometriosis, but that doesn’t mean we should dispose of the concept of autoimmunity entirely. Still, there appear to be other factors at play besides the immune system in the development of endometriosis.

In 2018, a study proposed a new theory, the “bacterial contamination hypothesis,” to explain why endometriosis develops. They cultured menstrual blood and uterine tissue from endo patients, only to find that the tissue was highly contaminated with E. coli bacteria. Many women were also suffering from endometritis, a bacterial infection of the uterine lining.

Normally, the female reproductive tract contains members of a bacterial family called Lactobacillus, which helps maintain a healthy pH in the vagina, among other roles it plays in the body. In humans, E. coli colonizes the gut, helping maintain a healthy digestive tract. We’ve long known that E. coli can cause infections when it spreads from the gut to other areas of the body. For example, it is a common culprit behind urinary tract infections (UTIs), as this bacteria can travel from the anus to the urethra when wiping at the toilet.

Some people think the reason why E. coli is found in the menstrual blood of patients with endometriosis has to do with gut permeability. An overgrowth of healthy bacteria in the gut, known as small intestinal bacterial overgrowth (SIBO), can lead to increased permeability of the intestines, meaning E. coli may be able to pass through the intestines into the pelvic organs. There’s limited evidence that SIBO and endometriosis are related, but it’s definitely an area begging further exploration.

One thing we do have substantial evidence for is that people who suffer from lower genital tract infections — UTIs, sexually transmitted infections (STIs), bacterial vaginosis, yeast infections, etc. — tend to get diagnosed with endometriosis at higher rates than those who haven’t had an infection. A study of nearly 80,000 patients found that lower genital tract infections were an independent risk factor for endometriosis, with a confidence level of 95 percent, even after controlling for comorbidities. I’m not a doctor, but I am an endo patient — and I can tell you that I myself have struggled with recurring vaginal infections for years.

Again, correlation should not be considered causation. One explanation for the overlap between endo and vaginal infections, for example, could be that pain from pelvic inflammatory disease (PID), which develops when an untreated vaginal infection spreads to the upper reproductive tract, is being mistaken for endometriosis in these patients. But the idea that bacteria could play a role in the development of endometriosis is a novel hypothesis that deserves more attention in the future.

Endometriosis is complicated. Most likely, it’s not any one event or process that causes it, but rather a combination of multiple complex factors. The way these factors — including immune dysfunction and possible bacterial contamination — interact appears to produce the chronic inflammation and systemic symptoms associated with endometriosis.

Until we start funding endometriosis research and taking this condition seriously, we may never know what truly causes endo to develop. But, hey: we know it’s not retrograde menstruation. At least that’s something.

What's in My Bag: Endometriosis Edition

Life doesn’t stop for endometriosis — which is why I always have to be prepared. Wherever I go, I take a couple of endo essentials with me in my bag.

I know this post has been floating around the internet for a long time (and TBH, I’m obsessed with it — because I’m nosy AF), but I’ve never seen an endometriosis version before. Hence why I decided to create one!

These are the endometriosis essentials I don’t go anywhere without. I hope these help you survive and thrive on-the-go just as I have — and when the going gets tough, I hope these tips help you get through.

Painkillers

When you have endometriosis cramps, there’s not much you can do other than self-medicate and wait for them to pass. A travel-sized bottle of painkillers fits neatly in your bag and makes the perfect solution for pain relief on the run. Aleve or Midol is my drug of choice, but other people prefer Pamprin, Advil or Tylenol. My advice? Choose whichever brand works best for you (and be wary of taking too much acetominophen!).

Thermal Patches

When I’m out and about, I never know when endometriosis pain is going to strike. That’s why I always carry a ThermaCare Advanced Menstrual Therapy self-heating patch in my bag. These patches take about 10-20 minutes to reach their maximum temperature, and last for hours afterwards. They don’t require any microwaving and have an adhesive strip to attach to your underwear, so they’re perfect for pain relief on-the-go.

Cleansing Wipes

I’m currently taking progestin for my endometriosis so I will no longer get a menstrual period. However, despite the lack of periods, I do get quite a bit of random spotting throughout my cycle. It can be difficult to predict when my spotting is going to start, so it often takes me by surprise when I’m out and about. I carry my Coconut Water Summer’s Eve Simply Cleansing Cloths to freshen up when spotting catches me off-guard.

Hand Sanitizer

The world is full of sick people, now more than ever — but it’s not practical to wash your hands at real sink everywhere you go. Hand sanitizer is a must for staying germ-free when you’re on the run. I buy mine at Bath and Body Works because I love the variety of scents, but the most important thing is that your hand sanitizer is at least 60% alcohol to kill the widest number of germs possible.

Prescription Medication

I take medication for my chronic illnesses morning and night. When it comes to my night meds, I don’t always have the luxury of being at home when it’s time to take my meds. So, I carry my prescription meds with me on an as-needed basis — and I’m careful to take them out of my bag when I’m home, so I always know where my medication is hanging out.

What to Eat When You Have Endometriosis

Disclaimer: Because of my background in eating disorder recovery, I’d like to first preface this post by saying that when I use the word “diet,” I don’t refer to a “diet” intended to help you lose weight or pursue “wellness.” These tips are not intended to help you lose weight or change your body in any way.

In this case, I’m using the word diet to refer to “what you eat in a given day” — and how these anti-inflammatory nutrition tips can aid in the medical management of endometriosis. However, please note that I am not a doctor, so my post is based solely on my experiences as a patient!

When you hear the words “anti-inflammatory diet,” what do you think of? If you’re anything like me, the first thing you hear is “restrictive.”

I have a history of an eating disorder, so I am immediately wary of anything that requires me to alter or limit my food intake in any way. But done right, the anti-inflammatory diet isn’t about what you “can” and “can’t” eat. Instead, it’s about filling your plate with foods that make you feel good — while still leaving space for the rest!

Most importantly, however, an anti-inflammatory diet can be a helpful tool for managing the symptoms of endometriosis. This makes sense, considering endometriosis has long been considered a disease of inflammation. These gentle nutrition tips can help you eat to decrease inflammation, and thereby the pain of endometriosis.

Fruits and Vegetables

Do you experience constipation or diarrhea with your endometriosis? A high-fiber diet can help eliminate gastrointestinal distress and decrease inflammation. If you focus on any nutrition tip from this blog post, I encourage you to gradually increase the amount of fiber in your diet — starting with eating more fruits and vegetables.

Like I said before, the anti-inflammatory diet for endometriosis isn’t about what not to eat. Instead, it’s about adding whole foods into your diet — and that includes fruits and vegetables. The following types are especially important to incorporate:

  • Dark leafy greens like kale and spinach are rich in iron, which you may need if you suffer from heavy periods due to endometriosis.
  • Fruits & veggies like artichokes, cabbage, kale, carrots, lemon and lime support the liver in detoxifying excess estrogen, which can contribute to endo symptoms.
  • Loading up on antioxidant-rich fruits and veggies like berries, citrus, onion and garlic can reduce stress in the body, and therefore endo pain.

Grains, Legumes, Nuts and Seeds

As I mentioned previously, high-fiber foods help regulate the GI symptoms of endometriosis. These include whole grains and legumes, like beans and lentils, which keep the GI tract happy and healthy.

Another important nutrient for people with endo? Omega-3 fatty acids, which work to decrease inflammation in the body. Certain nuts and seeds, including flax and walnuts, are high in omega-3s, making them a positive choice for endometriosis.

Meat, Fish and Dairy

Reducing your exposure to estrogen-producing foods containing artificial hormones might help you manage endometriosis. That’s why it’s important to consume organic meat and dairy whenever possible: conventional may contain growth hormones like growth factor-1 and rBST.

Remember those omega-3s? Fatty fish like salmon also contain high doses of omega-3 fatty acids, making them a positive protein choice for someone with endo.

And finally, if there’s any food I’d tell you to limit for your endometriosis (note: NOT eliminate!), it’s red meat, since it’s been found to increase inflammation. If you are going to have a burger, try to choose organic, grass-fed beef whenever you can!

Drinks and Sweets

Alcohol and caffeine are thought to be inflammatory. There’s no need to eliminate your daily latte if you don’t want to, but you may try skipping your afternoon coffee to help you cut back.

When it comes to alcohol, try not to exceed the daily recommendation of one drink per day for women. Alisa Vitti, author of WomanCode, also suggests swapping plain wine for a wine spritzer (half wine, half sparkling water) to cut back on alcohol in a tasty way.

As for sweets, a delicious choice is organic dark chocolate, since the flavanoids in cocoa decrease inflammation. Anything 70% or above is dairy-free, too, making it suitable for vegans or anyone looking to cut back on dairy for their endo.

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