Free of endometriosis pain? Not a myth, it can be done.

Endometriosis is something that is viewed as a life sentence. An endless suffering. Unfortunately, due to the lack of education that doctors and other medical professionals receive, this is true far too often. So many women are coerced into numerous surgeries that frequently cause more harm than good.

I have been pain free from endometriosis for almost 6 years and counting. How is that possible? To start, I finally stopped believing all of the doctors who told me that the pain was "normal", and that some girls just have "bad periods". The day the game changed was the day that I was lying naked on a bathroom floor, having almost passed out from the pain. That was not normal, no matter how many doctors tried to tell me that it was. Within that week, I started researching. I researched everything that I possibly could about the symptoms I was experiencing, and all arrows pointed to endometriosis. I had almost every single symptom listed; things were finally starting to make some sense.

From there, I got into some groups on Facebook that were dedicated to endometriosis. I connected with a woman (so thankful for you, Jill!) who was able to direct me towards an expert that was somewhat close to me, geographically. I had learned that real specialists are few and far between, and finding someone local is often not possible. This doctor was in Boston, which was a reasonable travelling distance to me from upstate New York.

I contacted this doctor, had a brief initial consultation, and scheduled a real consultation appointment with him in Boston. I went to my consultation, scared out of my wits. I was only 21 at the time, and I was doing all of this without the help of my parents (because I hadn't told them, not due to any lack of desire to help on their part). We talked about my symptoms in depth, and he agreed that the signs indicated probable endometriosis. He told me that his intention, if I wanted to continue on with him, was to do a diagnostic laparoscopy and to also do excision if he found anything.
What is excision? Read about it here: http://centerforendo.com/lapex-laparoscopic-excision-of-endometriosis/

My research, persistence, sought-out connections, and selection of a true specialist are the components that led to my several years of being pain free. The fact that the only person that I let perform any kind of surgery or procedure on me was an endometriosis specialist is absolutely crucial, as is the fact that I had this surgery done at 21 years old. Early intervention and the involvement of an excision specialist can be the difference between prolonged suffering and being able to live your life, doing what you want to do every day without being limited by pain. It is absolutely possible, but we have to be our own advocates. The extreme majority of doctors (including gynecologists) are not taught about endometriosis, and often, the little that they are taught is outdated information.

Stand up for yourself, reach out, choose your doctors wisely, and act as if you value your well-being just as much as you would value your spouse's or child's. Fight for a future that IS possible.
I am proof.

Sanitary Shouldn't Be Scary

Did you know that companies are not required to disclose the ingredients used in sanitary products? Does that make you feel concerned? These are products that you are using on the most delicate part of your body, yet manufacturers are basically allowed to put whatever they want in them. Super-bleached cotton, synthetic materials made with who-knows-what, and fragrances. We've got options, and I'm very interested in exploring them.

I've recently started taking a look at my different options when it comes to sanitary products and menstrual health. This month is my first month using a menstrual cup (Lunette), and so far, I'm very pleased with my choice. There are many girls and women who think that the concept of using a cup is "gross", but I personally feel that if you can't be comfortable with your own body's natural processes, what CAN you be comfortable with? Granted, I've also been living almost half of my life with endometriosis and adenomyosis, so my period is not exactly a stranger to me. Sure, there may be things that are not exactly glamorous, but I have zero desire to feel embarrassed or grossed out by my own body.

My next intended change is to start using Seventh Generation pantyliners as the backup for the Lunette, as opposed to using the chemical shitstorms that are currently in my bathroom closet. Change is hard, especially when you don't know if you will like the new products you are using, but there's a time when you have to evaluate priorities, and potential losses vs. potential gains. I think I've got a lot more I could gain here than what I could lose, how about you?

Midnight Rant

Last night, in the middle of the night, I woke up. Got up to pee, nothing out of the norm, and went back to bed. Once I was back in bed, I was overcome with a flow of thoughts, and I wrote up a storm on Twitter. I think this storm is important enough to organize into a post.

Hysterectomy. Is. Not. A. Treatment. For. Endometriosis.
"Oh, but Missy, it helps some people!"
Yes, because they also had adenomyosis and just didn't know it. Find me someone who has confirmed endo, and a hysterectomy eradicated their pain - not reduced, eradicated. I'll wait.

It helps some people because it's removing an additional source of pain that they didn't even know they had.
"But I was never diagnosed with adenomyosis after my hysterectomy!"
If your doctor was ignorant enough to give you a hysterectomy for endo, and endo only, I'm not surprised that there was no diagnosis. They probably didn't even know enough to check for adeno.

And for f*cks sake, stop getting mad at me because you don't like the way that I say the truth. We don't live in Candy Land, and there's a lot of you who need to wake the f*ck up. I'm bold, blunt, potty mouthed, and I use "mean" words like "ignorant", but you know what? I'll never lie to you like naive doctors will. I'll never tell you things that lead you down the path of multiple failed surgeries with minimal or no relief. I'll never lead you down the path of an unnecessary hysterectomy and take away your chance of carrying children. I'll never sugar coat things so that you'll stay with me as your doctor just because I'm too proud to admit that I don't actually know much about endometriosis. I am always truthful. I am sorry that the truth of endo isn't pretty. But the sooner you get the fire ignited inside of you, the closer you are to true relief.

"But I can't afford excision/it's too far away!"
Are you telling me that you wouldn't financially FIND A WAY and travel if your significant other or child were very sick? If you have endometriosis, you. are. very. sick. For the love of god, please stop dismissing yourselves, darlings. You matter, too. Stop acting like your pain & suffering isn't as important as someone else's would be. How many women have to take their own lives before you see? Endo may not kill, medically, but it kills. It can suffocate you, remove your will to continue on, eliminate your ability to see the light, make you desperate for the pain to stop.

Please stop putting yourselves anywhere other than top priority. You matter SO MUCH. You deserve relief. You deserve peace. You deserve happiness. You deserve a life. These things are obtainable. They are not easy, but they are not impossible. We need to educate ourselves, and we need to teach our daughters.

I cannot promise that there's a cure in the future, but I wholeheartedly believe that, with much effort, we can drastically change the statistics. Fight with me, loves.

Butterflies and Blades

I debated whether or not I should write this, but I think it could be important.  People have a right to know that they're not alone.  Especially when it's something that society says you shouldn't talk about.

I don't know that I'll be able to collect my thoughts well, so bear with me.

When I was 14, I started down the dark, lonely path of self harm.  I'm not going to get into the whys and the hows of it, it is what it is (or it was what it was, I guess?).  Long story short, shortly before I turned 19, I made a promise that I'd never do it again - that's what the butterfly tattoo is that's on my hip.  Fast forward to now, I'm 6 years clean, and I almost threw that away today.  I still knew exactl how to take apart a razor; it was like I'd done it yesterday.  I felt hurt, lost, and like someone had ripped my heart out of my chest.  My world was crashing in around me, and I was quickly losing my sense of who I was.  I felt out of control.  I felt hopeless.  Thankfully, I did the right thing this time.  Because I have a best friend with a beautiful heart and soul, I get to continue counting upwards without an instance of relapse.

I'm not writing this for sympathy, and I'm not writing it for attention.  I'm writing this to let people know that if you're struggling with this or anything like it, there is absolutely hope.  I'm not going to tell you that it's easy, because it's not.  But if I've made it to 6 years, then so can you.  It can be done, and you shouldn't give up, no matter what.  You are not alone, and you are strong enough.  You are enough.

"The Most Common, Devastating Disease You've Never Heard of", by Shannon Cohn

Start here:  http://www.elephantjournal.com/2015/12/the-most-common-devastating-disease-youve-never-heard-of/

What a great article, finally.

Ah, yes, "It's normal." Or "some women just have bad cramps." We're definitely vomiting and crying to get out of class, that's for making me feel like a hypochondriac and a liar./heavy sarcasm
If your period makes you cancel your plans, miss school, etc, that's NOT F*CKING NORMAL. I don't care if 10 doctors have told you that it is, every single one of them is wrong, I promise. 

Endometriosis isn't rare. (Also, world, it's not a damn typo, so stop underlining it!) There is no cure. It doesn't necessarily damn you to a childless life, if it's caught and excised early. Pregnancy sure as hell doesn't cure it (did you forget the part where we said there was NO CURE?) It has nothing to do with sexual assault. It's frequently misdiagnosed as IBS, because it can have a lot of GI symptoms as well (want me to tell you how much fun it is to feel like there's a fire poker shoved up your rear? Spoiler alert: it's not, and it will more than likely make you cry in public places).

There is such a lack of understanding when it comes to endometriosis. It's not just "bad cramps", and please, for the love of god, do not compare yours to mine. Do not belittle my pain, do not try to make me feel like it's not as bad as it is. Do not make me too scared to tell employers or coworkers because I think they'll think I'm just exaggerating.

Yes, I'm one of the lucky ones. I had excision done 3 years ago by a specialist, and that is literally the only surgery I've ever had to have for it. BUT, I also most likely have adenomyosis (a lovely sister tag-along disease to endo), which means that I HAVE to be on continuous birth control, or else I literally cannot work full shifts when Aunt Flo is in town. I cannot function properly. The pain is mind blowing at times. You don't get used to it, no matter how many years you've been suffering.

The pain was so intense at times I would have hot flashes, then dissolve into a shivering, sweaty mess on my cold bathroom floor." This. Imagine the worst case of the shakes that you've ever had from a hangover, and add a razor-wielding octopus inside your abdomen who is desperately trying to escape.

We do not need pity. We need awareness. We need doctors that actually have a clue what they're talking about. We need parents that are educated. We need school nurses who know how to look for the signs. We need OBGYNs that know when to send you to a specialist instead of carelessly performing a useless surgery on you that does more harm than good. We need people to pay attention, and we need people to LEARN.

Response to: Ask The Dietitian: What’s The Deal With Shakeology? by Abby Langer

After coming across this on facebook today, I thought I'd add in my two cents.
I think the tone of this article was a little "high and mighty".   To be frank, the entire second paragraph was childish and bitchy. That aside, I feel that there were some very critical things wrong here:

"You can’t fairly compare whole food to a drink." - You are very correct.  Whole foods are definitely the best option for nutrition.  Unfortunately, the vast majority of people struggle with that, for various reasons.  For me, I have sensory/texture issues that make it so I cannot eat most fruits/vegetables without triggering my gag reflex... so Shakeology fills that gap in my nutrition for me.  It's obviously a better alternative than not eating any fruits or vegetables at all, don't you think?

"The only thing Shakeology should be replacing, if anything, is $41 worth of crap food like the chips and chocolate bars that are in your pantry." - Also true.  But you're failing to acknowledge that THAT is what people struggle with the most, in my experience.  Do you have any idea how hard it would be for a person to go from eating junk foods all the time to being a perfect whole foods eater?  That's completely unrealistic.  There's nothing wrong with learning how to get there, and getting help in the process.  And yes, my chocolate shake is MUCH healthier than any chocolate bar in someone's pantry.  Does your chocolate bar have superfoods and probiotics in it? ;)

"Essentially these are protein shakes, but the 17 grams per shake is a bit below the 20-25 grams of protein that I recommend per meal." - It's not marketed as a protein shake, actually.  And if any person is advocating that Shakeology is a protein shake, then they're misinformed or under-educated about it. Not to mention, you can easily kick that protein up to 20-25 grams by adding milk, peanut butter, yogurt, etc to your shake.

"Each shake has only 160 calories, which is about 340 calories short of an actual meal by my recommendations. You’re basically relying on 17 grams of protein to keep you full until your next meal or snack, and good luck to you." - Once again, almost everyone I know adds things to their shake (milk, fruits, veggies, etc), upping the caloric content.  Secondly?  Shakeology DOES keep me full, for about 2.5-3 hours, and I know for a fact that I'm not alone there.

"Something that does irk me about Shakeology, and I have to mention this, is the ‘Team Beachbody’ thing that it’s associated with. Can we please stop talking about beach bodies? A beach body is a body in a bathing suit. A fat body, a thin body, a pink, green, yellow, or orange body. Whatever body you have is your beach body. Let’s stop idealizing the ‘perfect bikini body’, because that BS doesn’t exist. Be the healthiest and happiest that you can be, and stop trying to fit into society’s warped vision of ‘beach body’, which we all know is unrealistic for 99% of us." - I'm sorry you're so angry about this and clearly feel attacked, but not ONE of the coaches on the team I'm a part of talks about getting a "perfect bikini body".  We're all here to help you be the best version of you that you can be.  Quite frankly, my entire business revolves around the fact that "skinny" isn't a goal you should have (#strongnotskinny , anyone?).  A Beachbody IS a body on a beach.  And you should be happy with that body and proud of it, no matter what it looks like, as long as it's healthy!  That's why good coaches exist in this business.  That's what we're here for.  So please don't trash a company due to your incorrect views of it.

Shakeology isn't the healthiest thing ever on the planet Earth.  But do you know what it IS?  Way healthier than the majority of what people are eating on a daily basis.  A wonderful source of vitamins and minerals that a lot of people lack.  A great source of pre- and probiotics to help your digestive system.  A great substitute for the breakfast that I don't eat.  A good substitute for fruits and vegetables that I'm lacking due to my texture issues.  A source of nutrients that's helped my hair and nails be so much stronger than they ever were.  An energy providing drink that's a clearly way better option than soda.  The only thing that's ever been able to even TOUCH my levels of fatigue when my body spends too much time attacking itself.

And it's delicious.  I rest my case. :)

Invisible Illness Awareness Week 2015

The picture on the right, on it's own, probably doesn't look so bad. But when you compare it to the way my body normally looks, it's a different story. Endometriosis (and probable adenomyosis) is an invisible illness in so many ways, for me. It went undetected for almost 6 years, which is actually a much shorter time than average, statistically speaking. I had doctor after doctor tell me that it was normal, I just have bad cramps, when I voiced my concerns. So I believed them.

Until one day, I didn't. I started doing research, found out more about my family history, and knew that something wasn't right. I'm not one for people self-diagnosing, but I was right. And I knew it. Thankfully, I connected with a wonderful woman on Facebook who directed me to a legitimate specialist in Massachusetts. I had my consultation with him, and he was also in agreement about my findings and suspicions. We scheduled my laparoscopy (and excision, if endometriosis was found), and things got real. When I came out of surgery, I found out that I was diagnosed with Stage II endometriosis. I also learned that the stages aren't really any reflection of pain level at all. You can have a stage II in excruciating pain like me, and a stage III with a lesser level of pain. Everyone's body handles damage differently. No one who is suffering is weak.

Yes, I had my excision surgery in February of 2013, and yes, it's the only surgery I've had so far for treatment. Yes, I feel significantly better than I did before my surgery. In fact, I got almost 2 completely pain free years out of it, which is incredible for someone who thought they were going to be stuck with it forever. But last night was a very clear depiction of what happens when my 'angry dinosaur' gets upset. My invisible illness is not less real just because you can't see the twisting pains and probable scar tissue inside me, or the fatigue, or the depression, or the horrendous side effects from the birth control I was prescribed to treat the probable adenomyosis (migraines and bipolar level mood swings, sounds like fun, right?).

I believe in advocacy, awareness, and education above all. My illness may be invisible, but I am not. I am ‪#‎endostrong‬.