alternative therapy — Endo + Chronic Illness

When I was raising money for the Endometriosis Foundation of America during my training for the NYC Marathon, I started to get paranoid.

It’s never fun to ask people for money, even though it wasn’t going to go in my bank account. I started to wonder if my training for the marathon made it seem like having endo was no big deal. For people who don’t know me or another endo sister that well, they might not know what it means to have endo, because like many chronic illnesses, it is invisible.

In other words, if I broke my ankle and was walking around on crutches, any random stranger would be able to see that I was (literally) hobbled by an injury. But if I’m having killer cramps, or it feels like my ovary and fallopian tube is being tied into a knot, you can’t tell that by looking at me (unless you know my “I’m in pain” face intimately).

This blog is in a large part about making endo more “visible” for people who aren’t as well acquainted with it. In that vein, today I am writing about all the things I started doing in the last couple years (aside from surgery and painkillers) to try to manage my endo symptoms, preempt the pain, and reduce it when I do have a flareup.

Not everyone who has endo experiences debilitating symptoms, but many do. And if you see one of us out and about doing well or one of us succeeding in life, what you don’t see is how much extra work it takes just to function. It takes a LOT of time, effort, and mental energy. Like many chronic illnesses, managing my endo is a full-time job, and I think about it constantly, so this post is here to shed some light on just how many little things I do day in and day out to make life more liveable. And if YOU are one of my fellow endo warriors, and you already know all this, maybe you can try some of these methods too.

One of the very first things I started doing for my endo outside of surgery and prescription painkillers was acupuncture, and it’s genuinely one of the best decisions I ever made. I found an amazing acupuncturist who specializes in women’s reproductive health, and at my sickest in 2015, I went once a week. My insurance did not cover it then (post on the endo money pit to come!), but nothing was more soothing to me than when, before leaving the room, my acupuncturist said to me “Your only job now is to rest.” In addition to helping with the endo, my acupuncture sessions have addressed rock-bottom emotional times, two marathon recoveries, and the 2016 election. Now I go monthly. (I will go twice a month if/when I hit my insurance deductible.)

Before my second surgery, my specialist recommended pelvic floor therapy (another series of posts awaits because I know many people are curious). This has been another game-changer for me. When I started, I was going every few weeks; now I go every six weeks. But if you’ve ever been in PT, you know it generally comes with homework. And for me that means:

I do a set of hip and leg stretches (almost) every day.

For a while, I was using a dilator daily as well.

If you ever see my pill organizer when I’m traveling, you might think I take a fuck ton of meds. But I only take one daily medication. The rest of those pills are supplements and vitamins. Every day I take a probiotic for gut health; a women’s multivitamin for, well, everything; magnesium to relax my muscles and ease cramps; fish oil to reduce inflammation; calcium to cut back on PMDD symptoms and reduce the risk of osteoporosis (I hate milk and bleed out a lot of calcium every month); and vitamin C because chronic pain and fatigue can take a toll on one’s immune system.

Cabbage! Sesame seeds! Beef! Looks like someone is luteal.

I started eating an antiinflammatory diet. This isn’t as hard as it sounds; in fact, it’s pretty intuitive. All you have to do is cut out the shit you already know is bad for you — alcohol, refined sugar, processed foods. Additionally, I avoid soy, which has estrogenic effects (not great for an estrogen-dominant disease like endo). Right now, I am in an 80/20 place with it; I eat pretty well on week days and if I go out on the weekends, I am a little more lax. Lately, due to the holidays, antiinflammatory eating has meant experimenting with some healthy cookie recipes (vegan, gluten-free, no refined sugar). It has been an almond flour roller coaster, as I am sure my boyfriend can attest.

Antiinflammatory eating and avoiding hormone disrupters means expensive organic food is also regularly taking a toll on my wallet.

Inspired by WomanCode, I cycle sync. I track the four different phases of my cycle, and depending on which phase I am in, I fill up on certain foods, decide whether or not to make plans with friends, and choose which types of workouts I will do accordingly.

I seed cycle. During my menstrual and follicular phases I try to get ground flaxseed and pumpkin seeds into my food once a day. During my ovulatory and luteal phases, it’s sesame and sunflower seeds. The nutritional benefits of these seeds support the different types of hormone shifts that are supposed to be happening during these phases.

I’ve been tossing out all my bath, body, and home products, and replacing them with all-natural ones, hence the charcoal toothpaste you see above. OK, TBH, charcoal is not necessary for all-natural toothpaste, but it is fun to brush your teeth and then smile at your partner before rinsing. And it is true that many toothpastes, soaps, shampoos, laundry detergents, deodorants, are full of garbage like metals, sulfates, phthalates, and more. While I don’t believe that every little thing will give you cancer, I do believe these chemicals wreak havoc on your hormones, so THEY GONE.

Castor oil packs are both complex and cozy.

I started dry brushing to help support my circulation and therefore help my body eliminate excess hormones and toxins more efficiently. For a while I was doing this daily, then I got lazy. Back at it in 2019!

Recommended by my massage therapist, I started using castor oil packs for 30-45 minutes or so before bed — a thin layer of castor oil on my abdomen, four layers of flannel, and a heating pad or hot water bottle (perhaps even a cat) on top — four days on, a day or two off. This should help reduce inflammation, loosen scar tissue from my surgeries, aid digestion, and help my body cleanse itself more efficiently during menstruation. Also, it feels good.

Speaking of my MT and feeling good, when I was training for the marathon, I began going to massage therapy regularly. My MT also specializes in women’s reproductive health and is brilliant at somehow knowing exactly what I need.

I drink a fuck ton of water. I always feel worse when I don’t, and dehydration worsens cramps and slows digestion.

I am really rigid about getting AT LEAST seven hours of sleep a night. I’d really prefer eight or more.

I take Epsom salt baths regularly. Not only are these super relaxing, the magnesium in the salt relaxes muscles and therefore helps ease cramps, and stress reduction goes a LONG way in battling endo flares.

I’m not currently in therapy, but I certainly go back for refreshers when life is tough and the burden of endo is just too much on top of it all. Ain’t no shame in that game.

I spend a lot of time with friends and family because that almost always rejuvenates me.

I also spend a lot of time away from friends and family because during certain parts of my cycle (HELLO LUTEAL PHASE AND PMDD), I really need quiet, alone time because that also rejuvenates me.

I go to yoga once a week; I wish I had time to go more. Mind-body activities help reduce stress and stretching my body makes everything better. Plus, my favorite is hot yoga, and sweating is another great way to eliminate excess hormones and toxins.

Which is also one reason why I do some form of exercise almost every day (except for rest days or high-pain days). It’s great to sweat, and exercise is a prime stress reduction technique for me, whether it’s running, lifting, spin, or kickboxing.

Speaking of stress reduction, I’ve got a pretty great meditation practice going these days.

Therapy is great and so are antidepressants/antianxiety meds if you need them. My gyno prescribed Prozac for me years ago because it is proven to help with PMDD symptoms, which at the time for me, included crushing depression in the days leading up to my period. It also lifted a cloud of social anxiety that I hadn’t even realize had settled over me during college, and although I am on a different medication now, these drugs have been integral in helping me cope with the trauma of different diagnoses, surgeries, and treatment (or lack thereof).

I drink a fuck ton of kombucha and other fermented snacks because good gut health is key to all health, and certainly reproductive health. Did you know serotonin lives in your intestine? Yeah, so if your microbiome is off, your mood probably is too.

I track my period every day…with three different apps. The more information I have about my body, the better.

And finally, pain management takes up a lot of time, especially if you, like me, are trying to avoid taking copious amounts of prescription painkillers or even NSAIDs. So if ALL of the above techniques do not do enough to prevent my pain, when I do have a flareup, I’ve tried the following nonpharma methods:

Tiger balm for muscle pain. Love smelling like a walking jar of Vick’s VapoRub.
A TENS unit to shock my central nervous system into submission.
Clary sage essential oil has antispasmodic and anticonvulsant properties which helps ease a uterus that feels like it’s in a vice.
Topical CBD oil salve has helped a ton with back pain and taking the edge off of cramps.
And of course, my trusty old heating pad, which I once used so much that I toasted my legs. No really.

Did you know endo took this much time, energy, thought, effort? If you’re an endo sister, what methods do you use to, you know, function?

xo,
S

This past weekend, I hosted the very first Baltimore Flow meetup. It was small but AMAZING. It's incredibly cathartic to spend just a couple hours with people who know exactly what you've been through -- and being able to share what I've learned along the way made it feel (almost) worth it.

If you have endometriosis or you know someone with endo, you probably won't be surprised to learn that our stories can be pretty similar. Maybe not in terms of symptoms or physical experiences, but when it comes to years-long histories with dismissive doctors, misdiagnoses, and being told misinformation, it's a disturbingly trite story.

It takes an average of 10 years for a woman with endometriosis to get an accurate diagnosis. Because symptoms do vary widely and because they have commonalities with a number of other conditions, misdiagnosis is a huge problem. But that alone does not excuse the rampant lack of knowledge many gynecologists have regarding the disease. Nor does it excuse the dismissal so many women receive again and again, being told that their pain is normal or worse -- all in their heads.

The new endometriosis commercial on television (sponsored by pharmaceutical company Abbvie because OF COURSE IT IS), encourages women to talk to their doctors if they're experiencing heavy periods, chronic pain, or uncomfortable sex.

That's great and all, but what if you talk to your doctor and he or she says your experience is nothing to worry about (like mine did)? What if all you get is a pat on the head and a prescription for painkillers or birth control (like I did)? What if you want more?

Women deserve better. Honestly, Abbvie would have better spent their money educating doctors, but of course we can't trust them to do that. Abbvie is the maker of Lupron which was prescribed to me by doctors who promised me it was a "cure" and that side effects would be minimal (they can actually be quite devastating). LOL.

In light of all this, I wondered what might actually be helpful for women. So if you think you have endometriosis -- or even if you just think something isn't *right* with your period, I've decided to provide a list of tips and questions for you to discuss with your doctor.

But first a couple of disclaimers: First, I am not a doctor, and I don't know everything there is to know about endo despite having done a ton of research. These suggestions are not meant to be "expert advice" but rather what I've learned by making one choice or another along the way.

Second, although it sounds like I'm shitting on doctors, I don't actually think most doctors are bad. I think the majority have good intentions but are restrained by the structure of our healthcare system; insurance companies have a lot of control over how many patients they have to see in a day, and their busy schedules likely don't allow a whole lot of time for staying as up to date as possible. What this means for endometriosis patients is while your doctor may not be lying to you, he or she may give you misinformation (*ahem* like Lupron is a cure for endometriosis). Unless your doctor is an endometriosis specialist, chances are he or she does not know a whole lot about endo beyond the fact that birth control can suppress its symptoms, and that includes current best practices for treating it. Which leads me to my first point...

Be confident; you're an expert on your own body.

I know most of us grow up deferring to doctors, and with good reason. They complete years and years of schooling and training to do what they do. But that doesn't mean they know everything, and they certainly can't know what it's like to live in YOUR body every day.

So if you think something is wrong, persist until your doctor listens and explores possible diagnoses with you. Debilitating period pain is not normal. Bleeding between periods is not normal. Cramping between periods is not normal. Periods that last longer than seven days are not normal. Vomiting from the pain is not normal. Painful sex is not normal. I could keep going, but then you'd probably stop reading this blog post, and I think you get the point.

Trust your gut if something doesn't feel right. And if your doctor doesn't listen, fire his or her ass. Sorry not sorry. And yes, I said "fire." I know we don't think of doctors as people who work for us but ultimately that is exactly what they are. We pay them to keep our bodies in tip-top shape. You wouldn't keep going to a mechanic who tells you that that grinding sound your brakes make is normal, would you? So why keep going to a doctor who tells you excruciating pain that keeps you home from work once a month is normal? Y'all, we only get so many paid time off days.

Ask: Do you think I have endometriosis?

Or "Do you think I have PCOS? Do you think I have a fibroid? Do you think something is wrong?" It is OK to self-diagnose, and if a doctor doesn't like that TOO BAD. See previous section.

Endometriosis cannot be seen on any kind of imaging (ultrasound, MRI, x-ray, etc.), so doctors cannot make this diagnosis without performing surgery. A rare few may be able to do an internal exam and determine that there are adhesions, shifting your organs away from midline, but even then, without going in, they cannot diagnosis or determine the extent of your endo. Since surgery is understandably disruptive and expensive, it is not uncommon to get a wishy-washy answer from a doctor who isn't super well-acquainted with the disease.

Ask: Do you perform ablation or excision surgery?

Assuming your very good doctor takes you seriously and agrees it is time to figure out why your uterus is trying to kill you, that means he or she has agreed to perform surgery. But what many doctors do not discuss with patients is whether they will be performing ablation or excision surgery.

Both are laparoscopic which gets touted as "minimally invasive." That's because a small incision is made in your belly button and then one or more small incisions are made elsewhere in your abdomen (talking like a half an inch). The surgeon then goes in with tiny cameras and tools to remove the endo tissue. What this means: Your scars will be minimal. What this does not mean: Your recovery will be easy. Just an FYI.

The difference is in ablation surgery, the surgeon burns away the endometriosis tissue. With excision, the surgeon cuts it away. Evidence indicates that ablation surgery is significantly inferior to excision surgery in terms of the period of relief. Neither surgery cures the disease, and no doctor should say it does. While some women do find relief with ablation surgery, any many need another surgery two years later. This is why many endo patients have multiple surgeries. Excision done by a specialist should result in at least five years of relief.

But endometriosis is a cumulative disease; with each cycle, the rogue tissue grows. Still, excision surgery with lifestyle and diet modifications offers the best chance at long-term recovery. Most general GYNs only are prepared to do ablation surgery, so if you want an excision surgery, you will have to seek out a specialist. Be prepared that they are few and far between. I had to travel out of state for my surgery, and many specialists do not accept insurance. More on *that* clusterfuck in a later post.

And most importantly, no matter what anyone or Lena Dunham tells you, hysterectomy does not cure endometriosis.

What to know about drugs.

Because surgery is considered an extreme option and is disruptive to your life as well as expensive all around, most doctors try to manage endometriosis with medication. I have come around to the personal belief that a medication should be used only what it's intended for (i.e., birth control should be used only for preventing pregnancy, not for managing pain). And while everyone should be able to get surgery if they have endometriosis, it is not always affordable or practical, and with endo, you might get to the point where you need relief. Doctors may offer the following drugs, and here is what you should know about them:

Antidepressants: This is NOT a treatment for endo FFS. I can't tell you how many doctors have suggested antidepressants/antianxiety meds (or suggested raising the dosage) just because I cried in front of them. I know this happens to a lot of people, but you know what, it's not unreasonable to cry when you experience pain most days of the month and no one can help you. I do think antidepressants/antianxiety drugs can be wonderful. I personally have benefited from them greatly. However, they don't help when something external -- like a mismanaged and mistreated painful disease has no end in sight -- is happening. Only accept this prescription if you think you need it to manage clinical depression and anxiety.
Birth control: I went on birth control to manage my pain and PMDD. I went off birth control because it gave me a blood clot. We are the first generation to be on birth control long-term and as more and more of my friends struggle with infertility, I do wonder what that means for us. But in terms of endometriosis specifically, birth control can go a long way in quelling the symptoms -- but only the symptoms. It does not minimize the disease and as soon as you go off birth control, the disease may be rampant which could have implications for pregnancy if that is in your future.
Lupron: As you may have guessed from my earlier comments, I am NOT a fan of this drug. When I had no relief from my first endo (ablation) surgery, my doctors finally put me on Lupron. They presented it to me as a cure, telling me it would "burn" away any microscopic tissue left over after the surgery. They told me it was safe. At the time I was extremely sick and desperate to regain some semblance of quality of life. I didn't do my research. Lupron is meant to be a chemotherapy drug for prostate cancer. It works by acting on the pituitary gland and essentially shutting down your reproductive system, putting you in temporary menopause. The problems with this are two-fold: 1) It is NOT a cure; all it does is give you a break. 2) The side effects are extreme. I personally tolerated it well, experiencing only hot flashes and moodiness, but many women suffer memory loss, broken bones, and worse. Again, I'm no doctor, but I think this drug should be prescribed only for its intended use and would tell any of my friends not to accept a prescription for it.
Painkillers: Look, the hard truth of endo is that it is very painful and it only gets more and more painful if left untreated. Over-the-counter pain meds are unlikely to provide much relief, and the more prescription painkillers you take, the more side effects you may experience (like ulcers from heavy-duty NSAIDs, etc.). Painkillers are a part of the deal, but they only manage the symptom of pain; they do not treat the disease. Which leads me to...

Ask: How else can I manage my pain?

My first GYN told me she didn't "believe" in acupuncture but I could try it since she didn't know what else to do for me. WELL. *I* believe in it because it has done wonders for me. I found an amazing acupuncturist who focuses on women's reproductive health and even if it doesn't relieve my pain instantly, it improves my wellness immensely by improving the quality of my sleep, decreasing my stress levels immediately, and overall acting as a kind of "reset" button for my body when it is feeling depleted.

Other ways to holistically treat your pain? Consider changing the way you eat. Sugar, processed foods, alcohol, coffee, and soy can aggravate endometriosis. Get enough rest. Your energy fluctuates throughout your cycle and honoring where your body is can work wonders. Meditation can help you get your mind right, decrease your stress, and improve your pain indirectly. Massage can also be beneficial for helping your body eliminate excess hormones and helping you relax. Switch out chemical-laden products for natural ones that don't block your body's cleansing processes.

Look for other sources of pain. Many women with endometriosis also have interstitial cystitis which can be improved by eating a low-acid diet. Many women with endo (myself included) have tight pelvic muscles (a well-trained endo specialist will be able to tell you if your muscles are tight). This compounds the pain and you can get a referral to a pelvic floor physical therapist.

Ask: Why?

This is probably the most important question you can ask and I recommend asking it over and over again. Your doctor might not have all the answers but someone out there does. Ask why you're experiencing xyz symptoms. Ask why your gynecologist is recommending abc path of treatment. Ask your doctors why they do recommend what they recommend or why they haven't recommended what you think might work.

Do NOT hesitate to ask questions and do NOT let a doctor rush you. Find a new one if you're not satisfied that things are being explained to you properly. It is YOUR body and YOUR life and you deserve to know what is being done to it, how it is being treated, and why.