Being sick sucks. I’m not talking about having the stomach flu, sneezing a ton, or having admittedly awful sinus infections – I’m talking about being sick. Dealing with a chronic illness and frequent, debilitating pain is a feeling unlike any other. Your body, which is supposed to protect you from the world, becomes your enemy. It doesn’t listen to you when you tell it to do things, it freaks out when you alter your routine and it completely shuts down when you take on too much stress, too little sleep, or sometimes for no reason at all. You are at war with yourself, a battle most people are unable to fully understand.
I was diagnosed with endometriosis when I was twenty-two years old, but my history with this disease began back when I was in high school and felt the wrath of my first ovarian cyst. Luckily, after managing the cyst and the pain I was feeling, I felt relatively healthy for years. At 22 this all changed and my body and I began this war – exhaustion, sharp abdominal and pelvic pain, migraines, leg pain, a screwed up immune system, and more ovarian cysts. This time they were endometriomas, which meant they were cysts filled with endometrial tissue, and prone to bursting if left untreated. One of mine burst (sending me to the ER in New York City in the middle of the night during a snowstorm) but one of them remained, the size of a grapefruit, in one of my ovaries, for months until I could finish my semester of school and have laparoscopic surgery. Finishing this spring semester was one of the hardest things I’ve ever done – there were many moments where I thought I would have to leave school and go back home to Massachusetts. It was the end of April, the last couple of weeks of classes before final exams started, and I was missing classes and having to get extensions on big assignments. I was stuck in bed, exhausted, battling massive abdominal and pelvic pain, horrible headaches, nausea, and intense dizziness. I was out of commission when I really couldn’t afford to be. Somehow, with the help of understanding professors and teaching assistants, I managed to take my exams and finish the semester with a solid GPA. I worked my ass of but even so I’m still not really sure how it all worked out in the end.
Once I returned home I finally had my surgery, where they removed said endometrioma and formally diagnosed me with endometriosis, which is a condition where tissue similar to the tissue that normally grows inside the uterus (the endometrium) actually grows outside of the uterine cavity. It can grow on the uterus, intestines, leg nerves, appendix, rectum, and abdominal wall, just to name a few places. These tissue implants fluctuate with a woman’s hormones and result in full body inflammation – and pain. After my surgery I knew that all my problems wouldn’t be solved, so I began doing as much research as I could on this pervasive disease. My surgeon removed as much endometriosis as he could but the odds were not in my favor – it would come back and I would be in intense pain again, it was just a matter of when.
I made changes to my already limited vegan diet in the hopes that consuming fewer inflammatory foods would lessen the pain in my already super inflamed body. This meant no to gluten, yes to more organic produce, and being mindful of my processed sugar, soy, and caffeine intake. My standard diet before endometriosis didn’t include any dairy products, red meat, or alcohol, so I didn’t have to worry about eliminating them. I was already very much focused on not eating too many processed foods and fried foods but even so, the whole gluten thing was a big adjustment. I had no idea if it was even going to do anything for my pain levels, but figured there was no harm in trying it out. For the first three months I didn’t notice any difference – I was still in pain and figured that I needed another surgery. My surgeon, however, thought that another surgery was pointless. Instead he strongly recommended putting me on a dangerous drug that would send me into a menopausal state. You see, I had been doing my own research on endometriosis treatment for years, and the second he recommended Lupron a huge red flag popped up. NO. I told him absolutely not, which signaled the end of our relationship.
So there I was, dealing with a lot of pain and feelings of being misunderstood even by my own doctor. I took matters into my own hands and immersed myself in more research in order to find a new surgeon who approached the disease like I did. I read that the surgery I had performed on me back in 2013 wasn’t proven effective for eliminating endometriosis – it just continued to grow back like nothing had ever happened. I knew this, and I thought that was just the nature of the disease. However, I quickly learned that there was another way to do surgery, called laparoscopic excision, that was getting great results in removing endometriosis lesions permanently. If this sounds too good to be true, then it’s because it kind of is: there are only a handful of doctors who know how to perform excision surgery correctly.
Now I can rant about this for a longggg time, and I can go into a frustrated diatribe maligning the current state of our healthcare system, the ridiculousness of our insurance companies, and the raw end of the deal that most women receive when it comes to their health and how women with endometriosis aren’t taken seriously by many doctors. Maybe I will post a critical breakdown of all of these points someday but today’s not that day. Instead, all I will say is that it was a long journey that brought me to my current doctor, Dr. Mackenzie. The journey was punctuated by many stops and starts, a lot of pain-induced crying sessions, and finally, a surgery date for a laparoscopic excision surgery.
That surgery was one month ago. I feel incredibly lucky that I was able to have the surgery at all, and incredibly grateful that the wonderful Dr. Mackenzie is now in my life. For three and a half hours he carefully removed all of the endometriosis in my body, which is no easy task. There was a lot of endometriosis, which is both depressing to think about and a huge relief that my pain was very real and very warranted. This disease has a way of playing with your head sometimes, because you don’t really know the truth about what is going on inside your body. You feel pain, but you have no way of knowing what is actually going on. Only surgery can reveal what organs are affected, what parts of the body are fused together where they aren’t supposed to be, and what nerves are involved. A couple of years ago I went to my former doctor CONVINCED that I had another ovarian cyst, because I had all the symptoms. When he told me that the ultrasound didn’t reveal anything, it was like a slap in the face. I had zero control over my own body and I couldn’t even attempt to understand what was going on inside me. Somewhere along the way you begin to question your pain and say to yourself “hey, maybe I’m overreacting, maybe it isn’t that big of a deal” because you can’t actually see anything that’s wrong. So while the physical pain can be long-lasting, the emotional pain of endometriosis leaves far more scars.
So I’m healing. My immediate recovery from the surgery was quick and surprisingly low on the pain scale. Before my surgery, I asked Dr. Mackenzie if any of his patients recovered without the use of heavy duty painkillers. He laughed and told me that I would be the first. My bottle of Dilaudid pills remains untouched in my medicine cabinet today. By choosing to recover without painkillers (only the occasional Tylenol) I was attempting to take back control of my body. I wanted to feel the pain and work through it myself. It was as much mental as it was physical, and I think it contributed to my short recovery time. I wish that I could end this story now, with a proclamation that I am living pain-free and putting all of this behind me, but I can’t. My body is still fighting to feel “normal,” whatever that is anymore. I have to build my strength back up, because even just walking around Boston for the afternoon exhausts me and leaves me in bed with my heating pad. My hips are in a great deal of pain, which will hopefully be helped by a pelvic floor physical therapist at some point. Now that I no longer have any endometriosis in my body (which is what my doctor tells me), I have to figure out what other health issues I have going on, and where the rest of my pain is coming from. Some days I feel let down, disappointed that I am not feeling AMAZING! HEALED! HEALTHY! But I’m trying to keep my eyes on the prize – this surgery was 100% necessary, it was a positive thing, and I am one step closer to feeling AMAZING! HEALED! HEALTHY! But I still have a ways to go.
So I will continue to pay close attention to the signs that my body gives me, in the hopes that I can regain just a little bit of control. I’ll continue to watch what food I put in my body (because the whole gluten-free thing actually helped a lot once I got past the first few months), and I’ll focus on keeping not just my body, but my mind, healthy and positive. Endometriosis will always be a big part of my identity, even when it (hopefully) doesn’t continue to grow back. I am forever changed by this disease, in both positive and negative ways, and I am still coming to terms with that. I am a work in progress and I strive to be a healthier, happier human being every single day. So if I can offer you one little preachy morsel of advice it is this:
Don’t take your health or your happiness for granted. Appreciate every day that you feel good and don’t beat yourself up on the days where you feel less than stellar. You are whole, even when you don’t feel that way, and you have the power to pull yourself through the doubt and the insecurity and the anger and the heartbreak. You have all of the strength you need, you just might need a little help finding it sometimes.
If you want to learn more about endometriosis, visit the Endometriosis Foundation of America and check out the recent documentary Endo What? from director Shannon Cohn. And, most importantly, if you are dealing with endometriosis, talk about it with other people. Share your stories, build support, and encourage other women to start a dialogue. This disease isn’t talked about enough because it’s seen as an awkward, embarrassing, “women’s issue” and the only way to change this is by talking about it and educating other people.