ENDOMETRIOSIS AND VEGAN DIET: MY STORY
Ciao amici buoni! Have a seat and grab a cup of coffee, because we’re going to get deep today. I am going to share some personal details about my life: specifically, my experience with endometriosis and vegan diet. A video on the same subject by YouTuber Mic the Vegan inspired this (long) post. The video is called “1 in 10 Women Have the Missed Disease” and it’s about how a going on a plant-based diet can affect endometriosis.
I like watching Mic’s videos partly for his snarky sense of humor but mostly because they are heavily research-based and well thought out. I never doubt that Mic has gathered the requisite evidence to support the information he covers in his videos. Had it not been for watching his Missed Disease video, I probably wouldn’t have thought to share my experience. You see, I’ve never declared it publicly, but I have endometriosis.
Sharing my story with the world is a new experience for me and feels a bit awkward, but I think it is really important to talk about it, especially after having watched Mic’s video. I want to help people who might be going through what I went through, so I’m just going to get over myself and spill it all. Got your coffee? Good, let’s get started.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a condition where endometrial tissue—tissue that normally grows inside the uterus—migrates outside the uterus. The tissue implants itself in all kinds of crazy places inside the body where it’s not supposed to be, but continues to act like uterine tissue. The rogue endometrial tissue still tries to shed every month just like normal uterine tissue, only it is doing so in the wrong place in the body. You can imagine this causes all kinds of problems, not the least of which is extreme pain, and sometimes infertility.
As far as I know endometriosis is not curable, but plant-based diets can help greatly reduce the symptoms, according to the scientific research that Mic cites in his video. You should definitely watch it to learn more about the nutrition aspect, but right now I just want to share my unscientific experience, which I have to say upfront is promising but inconclusive. You’ll see why it’s inconclusive when I tell you my story, and though no hard and fast interpretations can come from my experience, I’m hoping it will at least help you have a conversation with your doctor or loved ones, or help you to consider information you may not have considered before.
MY ENDOMETRIOSIS STORY
When I was in my early 20’s, I had the worst periods. The WORST. That time of month was always so painful, but I lived with it for a long time because I thought I was just one of those women who had really painful periods and it was my cross to bear as a female. I also knew painful periods were common so I had no reason to think anything was wrong with me. But over time, the pain seemed to get even worse each month if that was possible. It got to be so painful that eventually during that time of month, I literally couldn’t function for days on end. Unless I took a lot of pain killers at the very first sign of discomfort or ideally before it started, then it wouldn’t matter how many pain killers I took later on, nothing would stop the train wreck of misery I’d have to face. Once the pain started, I would ball myself up in a fetal position and stay that way for an hour or longer because I couldn’t straighten out my body, the pain was that bad.
My wake up call came one night when I was living at my parents’ house after graduating college. I had gotten my period the day before, and I could always count on the pain starting around day two or three of my cycle. This particular night I felt fine so I went to bed without taking any preventive medication. Unfortunately I woke up around 2:00 am to full-on, excruciating pain. Not only did I have the usual “cramps” in my abdomen (If by “cramps” you mean someone reached up inside my hoo-ha and was pulling my innards out, then yeah, I guess you could call what I had “cramps”), this time the pain shot around my back and down my legs. I tried adjusting position in bed, but there was no position I could find that would relieve the relentless agony.
I didn’t want to wake my parents, so I tried to fix myself on my own at first. I tried a hot bath, which did nothing. I tried a hot water bottle. Again, nothing. I tried taking the maximum amount of painkillers I could take without shutting down my liver. None of it made a damn bit of difference. After trying all these things, I crawled back into my bed and rocked myself back and forth, tears streaming down my face, just willing myself to sit and take the pain until it was over.
It soon became clear that even willing myself through it wasn’t an option, so in spite of the ungodly hour I called out to my parents for help. “Mom! Dad! You have to help me!” I cried. My Dad was the first one in the room. “What’s the matter? What’s the matter?!” he rushed up to my bedside.
“I can’t take this pain anymore! You’ve gotta help me!? I wailed, tears streaming down my face.
“What’s going on, do you need to go to the hospital??
“No!” *sob* “I need to get drunk! You have to help me get druuunk!”
I wish I was making that exchange up for effect, but sadly, that is exactly what I said to my father as he stood there watching me suffer.
Now, my parents are old school, more on the traditional side than not. They would never go get alcohol for their children just because we asked for it–or for any other reason. It took some convincing to get him to do what I asked, but I recounted to him all the things I had tried to relieve the pain, clearly none of it worked, and I refused to go the hospital. Just moving my body from my bed to the bathtub was difficult, there was no way I was going farther than that. I was over 21 too, so that helped! Ultimately my dad, bless his heart, did go down to the kitchen and brought back a shot glass and a bottle of whiskey. I’m assuming it was the good stuff, because my Dad wouldn’t drink anything other than the good stuff. I’ve always hated whiskey so it made no difference to me. Come to think of it, that is probably why he chose it. But in that moment, all I really cared about was that it was alcohol. The stronger, the better.
My dad sat on the side of the bed with me as I took shots of that awful stuff. I only did two or three actually, and I didn’t get drunk. He wouldn’t have allowed it if I tried. I just wanted to get to that place where you don’t feel as much, where I was finally relieved of the pain, at least enough to fall sleep. While he was sitting on my bed, my Dad said softly, “Honey, I know you don’t want to go to the hospital tonight. But when you get up tomorrow, we’re calling your OB/GYN and we’re going in as soon as they can see you. We have got to figure out what’s wrong with you.” I agreed to that, and now in my alcohol-induced “not-happy-but-no-longer-miserable” place, I soon nodded off.
THE ROAD TO ENDOMETRIOSIS
We started out at Planned Parenthood – I was just out of college and didn’t have health insurance so this was a no-brainer. My care there was exceptional, but they could only go so far with their diagnostic capabilities before they told me I had to see a specialist. So, we continued on a dual path between a pelvic pain specialist at the UofR Strong Hospital and a private OB/GYN who was, again, exceptional, if more costly. Long story short, through process of elimination, they determined that what I had – have to be accurate – is endometriosis. The nature of the disorder makes it difficult to make an ironclad diagnosis without a laparoscopy, an invasive test that requires cutting open the belly button and poking around my innards with a camera. Needless to say that was not my first choice, nor was it my doctor’s, and all of the diagnostic actions she had taken up to that point clearly indicated endometriosis. She told me that going on the pill was the preferred treatment, and if I responded well to the pill that would pretty much confirm her already strong suspicion. So that day, I got my prescription and went on the pill.
Several months in, I felt like I was in a different body. The monthly pain was mostly gone. I could function normally, be active, even stand up straight during that time of month! The hormonal acne that I had been fighting disappeared as well. I felt like a light bulb went on, allowing me to see through what had been a very dark time of month up until then. I was truly amazed at the night and day difference in my periods and in the amount of pain I had, all because of one little pill (which, of course, I had to take every day).
While all of this was coming to a head, there was still one thing I had not yet done: I was not yet vegan. It was around this time of my life that I was either thinking about or had just gone vegetarian. I don’t recall the exact timing of it as compared to going on the pill, but I was still pretty much an omnivore, eating a lot of dairy, eggs, cheese, etc. Vegan wasn’t even on my radar yet.
ENDOMETRIOSIS AND VEGAN DIET = RELIEF?
Let’s skip over many years of irrelevant stuff–travel, poor choices in men, getting jobs, moving, leaving jobs–and stop off at about 11 years ago. I had been on the pill now for many years consistently. Things were going great! The pain was still gone and my condition was managed beautifully. But 11 years ago, I finally added that one missing link. I went vegan. I made a video about why I went vegan if you’re interested in hearing the story. It’s not relevant here so I won’t go into the “why” but in my biased opinion I think it’s a good story and I encourage you to watch the video. Suffice it to say that after much research and peeling back the veil, I realized what was going on in the world as far as animals are concerned, and I knew I couldn’t be a part of it any longer.
I continued on the pill as normal through my transition to veganism and everything was copacetic. Then, fast forwarding again to three years ago, somehow I got a bee in my bonnet to go off the pill. I don’t know what sparked it, I had been on the pill for so long at that point—most of my adult life in fact—that I just had this nagging feeling I should give my body a “break.” I was curious to see how I’d fare without medical intervention after all this time. Would the pain return? Would I be one missed pack away from curling into the fetal position, unable to function again? All I knew was that I was older now, I had become vegan eight or so years prior, and I simply had to find out for myself what would happen if I went off the pill. And so I ditched the pill for two whole years.
MY INCONCLUSIVE CONCLUSION
Since everything overlapped quite a bit – going on the pill, going vegan, going off the pill – and I wasn’t tracking my condition in any way whatsoever, I can’t come to a decisive conclusion about what worked the best to manage my endometriosis. What I *can* say however is this: after having been vegan for roughly eight years, then going off the pill for two, my pain never came back, at least nowhere near the level it had been at pre-vegan. Pain did start to rear its head again and for a while I was worried that I’d be back at square one if I carried this experiment too far, but to my relief it only ever amounted to moderate cramps that were easily managed by popping some ibuprofen. Never did I experience the kind of hand-wringing pain I had in the early years.
Now, this abatement could have been caused by anything—getting older, different mix of hormones being produced in my body (and being administered, as my doctors continually updated my prescription with lower doses), going vegan, consistent exercise over the long term. But I can say with certainty that two years off the pill is plenty of time for one’s body to readjust and reset to whatever it considers “normal” and that my “normal” when vegan was much less painful than my “normal” as a non-vegan. That much I can say for sure.
My little experiment definitely highlighted where my body was at in terms of dealing with endometriosis. I think the results of the experiment, although inconclusive, pointed to a vegan diet as at least helping in the management of endometriosis if nothing else. There is no downside and only benefit to be had from going plant-based, and I feel I realized that benefit in my own life. I hope my story has helped at least shed some light and offer a different perspective on a serious condition which can have terrible consequences for many women. If you feel compelled to use my story when talking to your family members or your doctor about endometriosis, please do so, and let me know what happens. I would love to hear your experience, and if my story helped at all, even in a small way, then it was totally worth writing this very long post.