10 Years in The Making: This is What it Feels Like Living With Endometriosis

I’ve been complaining of pain for a while. Honestly, though, it’s hard to put into words exactly how I feel and I think that’s the problem.

Because I don’t know where to begin. Because for the past few months, I didn’t know what was wrong with me.

I knew something wasn’t right. I mean it’s not normal to feel sick all the time. But after visiting multiple doctors —all telling me I was fine, why wouldn’t I believe them?

I mean, they’re the ones with a medical degree, right? It’s just this thing is really hard to figure out.

Did you know 10 years is the average length of time it takes to receive a diagnosis? That 1 in 10 women are affected by this chronic illness mainly during their reproductive years (ages 15 to 49)? That 68 percent of women are initially misdiagnosed with another disorder? That 82 percent of women are, at times, unable to carry out day-to-day activities? Oh, did you also know that 50 percent of those with endometriosis also experience infertility? I didn’t —most likely since no one wants to openly discuss this shit.

I remember googling my symptoms.

Each click led me closer to the truth (or closer to my death lol since per Wikipedia I died three days ago; you know how it goes). My truth. Something I didn’t understand until I started advocating for myself. Like I said, for a while now I’ve been really sick. I just didn’t know. I didn’t know how or why until now. Until I realized that I had a bunch of hormonal deficiencies. Until I bothered my team of doctors long enough for someone to actually take me seriously. I’m a hypochondriac so it’s all in my head, right? Wrong. I’m not crazy.

It’s just when you google it, these sites fail to mention all of the signs and symptoms.

They really only say painful periods, which for the record I’ve had my entire life. Except, they leave out the debilitating migraines, brain fog, and mood swings. No one talks about the severe anxiety, fatigue, and insomnia. No one brings up night sweats, blood clots, or nausea. How about chest pain, shortness of breath, rapid heartbeat and dizziness. I bet you didn’t know that knee pain, back pain, certain food intolerances, and vitamin deficiencies are also associated with endometriosis.

Oh, and if you’re peeing a lot, there’s a reason for that too. But I’m a diabetic so my sugar must be high. Nope. Even when I’m in range, I have to pee like every five minutes. I have to pee so much that it’s starting to affect my quality of life. And don’t get me started on the hormonal acne I’ve been dealing with, which is actually how this whole thing started —at least when I put my foot down and made a vow to see specialist after specialist until someone told me what was up. Until I got a transvaginal ultrasound that I was given to merely calm my nerves since it was all in my head.

The doctor literally told me that I was feeling like shit because I’m anorexic.

“I know your type,” she says. But you don’t. “I see girls like you come in all the time and it’s always the same thing. You’re not eating enough so you’re tired and that’s why you feel the way you do. But to put your mind at ease, I’ll give you an ultrasound just to prove there’s nothing wrong down there.” Except, in this case, she was wrong and I was fucking right. Patients shouldn’t know more than their doctors. I don’t blame her though. Because yeah —physicians are trained to deal with thousands of conditions.

It’s just, they don’t always immediately recognize the symptoms of endometriosis because they overlap with other disorders. Plus, like I’ve already established, it’s hard to articulate or even pinpoint the pain I feel, so it’s not really a surprise that doctors can’t either. That said, a few pokes and prods later and there it was. They found multiple cysts on my left and right ovaries —another key symptom of this incurable disease.

From there, I was sent to a specialist.

Make it three. Long story short (I’ll get into the specifics in another blog post), I had my answer. Endometriosis, which for the record is a painful disorder where tissue that normally lines the uterus grows outside instead. In short, what’s outside down there should be inside and no one knows why. It’s not my fault either. I was told since I didn’t get my period until I was 18, I had what’s called retrograde menstruation.

Basically, when you have a period, some of the endometrium (womb lining) flows backward, out through the fallopian tubes and into the abdomen. This tissue then implants itself on organs in the pelvis and grows, which is where endometriosis comes in. It most commonly involves your ovaries, fallopian tubes as well as the tissue that lines your pelvis; rarely, does it spread beyond. The weirdest part is that displaced endometrial tissue continues to act as it normally would. It thickens, breaks down and bleeds with each menstrual cycle. So it appears to be business as usual.

But because the displaced tissue has no way to exit your body, it becomes trapped.

When endometriosis involves the ovaries, like in my case, cysts called endometriomas form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions —abnormal bands of fibrous tissue that cause pelvic tissues and organs to stick to each other. I remember being grossed out. Overwhelmed. After I stopped ugly crying, I realized I was relieved. Finally. Vindication. Confirmation. I am believed. It’s just after the initial shock wore off I realized I have yet another chronic condition.

I can’t. But I have no choice. So I go home. I have to call my family. I have to tell them. Let me say, they were anything but relieved. Arriving instead —long blank stares. Sadness. Questions. A lot of questions. Too many questions. How are you? How are you now? How are you doing? You look good. Are you better? You’re not better? Why aren’t you better? Are you feeling better? When will you be better? You look well. You don’t look sick. Tell me again, why can’t you eat that? What is the plan? Do you have a plan?

What will you do? Make sure you do it. Are you going to do it? I don’t think you’ll do it. Please do it. Have you tried yoga? Have you considered meditation? Have you tried not eating dairy? How about nutrition? Medication is bad for the body and you’re an addict. All those chemicals. You can’t take that. What are you going to take instead? Can you have babies? Are you infertile? You should have a baby. You should start having babies. Why aren’t you having babies? Are you better? We can’t wait for you to feel better —to get back to normal.

“We just want you normal.”

But normal changes. Normal once was early mornings and staying busy. It was completed to-do lists. Events. People and things. Normal was the absence of feeling. Of not hurting. Nothing bleeding. Normal was going about your day without stopping. Stopping to think about it. Not stopping to wonder how you do it. Normal is now aching. A deep aching pain. Always. Sunken eyes. Grey skin. Swelling. Bleeding. Blood that is red, then brown, black. Thick. Heavy. Everywhere. And then clots, thick, fleshy and grey.

Normal is now tiredness. Exhaustion. It’s being slow. It’s feeling slow. Withdrawn. Feeling sick. I am sick. I’m in the toilet. In the bath. In the sink at a party. At a relative’s house. Always keeping it secret. Feeling sunken. Feeling small. Thinking about it. Thinking about pain. Always thinking about my body. Your body. Assessing every twinge, every tug, every pull, every ache. Waiting. Holding your breath and counting. Waiting for it to stop. To get worse. To come back again.

It’s exhausting. And it’s all hidden behind clothes. Not seen. Not talked about. Embarrassing.

But it’s not —at least it shouldn’t be. Except, it is according to society. I get it though. The nature of this disease and the shit we deal with is considered “TMI.” Essentially, we’re supposed to filter what we’re experiencing because it’s unpleasant? Not anymore and definitely not here. But in order for the conversation to begin, you have to understand what it is we’re talking about and just how much it affects everything. So this is what it’s like living with endometriosis (at least for me).

1. It’s Way More Than Merely a Painful Period.

Discomfort and mild pain during menstruation are fairly normal. But being bedridden for three days because your cramps are so excruciating you can’t do anything except lay still with a heating pad is not. Doctors call this dysmenorrhea; and unfortunately for me, I know this very well. It literally feels like someone is chainsawing my insides. I mean, a normal period doesn’t have you doubled over, crying —sick to your stomach from pain. A normal period doesn’t affect your other organs. It’s not supposed to hit you harder than the flu. It shouldn’t cause you to miss work.

But it does. Because it’s canceled plans and lost friendships.

Because a normal period doesn’t completely take over your life. That’s the thing though —I was never normal. Thank GOD my boyfriend doesn’t hold anything I say during this time over my head. Because I can get mean. PMS is real, people. It’s like why am I being such a bitch and why do I hate everyone and everything? Why am I crying? Why am I eating everything in sight? Then, I start bleeding and it all makes sense. Except, the type of pain I’m describing here isn’t just once a month (although heightened during menstruation), it’s nearly every day.

2. The Lower Half of Me Hurts Most of The Time.

It’s like my body hates me. As if being a type one diabetic isn’t enough. Ugh. My pain radiates. It starts off quiet, low in my abdomen. Then it gets louder, more sharp, more twisting, pulling —until it’s completely taken over. It feels like someone has ahold of my insides and they’re slowly wrapping them in barbed wire (like you’d wrap a Christmas tree in lights). It’s the worst type of pain I’ve experienced. And it gets worse depending on what I eat.

In fact, I’ve always wondered why I feel like shit after consuming a large meal. I never understood how people could go back to work or have fun because all I want to do is curl up in the fetal position and not move. So today, I try to avoid dairy and gluten (gluten intolerance is fucking real, people) at all costs. I play the tape. Yeah, it may taste good going down but it’s not worth it. Plus, chances are I’ll wake up with a few extra pimples (because this shit causes acne). So yeah, it’s annoying but hormones are worse.

3. Hormones Really Are a B*tch.

Excuse my French, but I never realized how much hormones control and effect just about everything inside of us —even how we act and choose to behave on the outside. I mean, I didn’t willingly want to start hysterically crying at the check-out line in Bloomingdales a few weeks ago. But that’s the thing about endometriosis. Mood swings. They’re real too, people. I find myself getting really angry over nothing. Like blood boiling, hand in fist pissed.

The thing is, as we age, most of us will experience some type of hormonal deficiency —specifically, a drop in progesterone levels. Progesterone is a sex hormone mainly produced in the ovaries following ovulation each month. It helps to regulate your cycle and gets your uterus ready for pregnancy. It also complements some effects of estrogen, another female hormone and it works with testosterone, the precursor for adrenal hormones. But it also acts as a mood stabilizer.

So if you have low levels of progesterone, like me, you can expect:

Menstrual irregularities
PMS
Acne
Brittle nails
Dry cracked skin
Fatigue
Night sweats
Hot flashes
Foggy thinking
Sugar cravings
Migraines
Joint pain
Allergy-like symptoms
Infertility

Because when you don’t have enough progesterone, estrogen becomes the dominant hormone, which may cause symptoms like the ones above as well as depression, anxiety, and you guessed it —mood swings. I was living with all of these damn signs and yet, I was deemed fine? No. I wasn’t. I should also add that progesterone is important during childbearing years. If you don’t have enough, you may have trouble getting or staying pregnant.

4. I’ve Made Peace with The Fact That I Most Likely Can’t Have Kids —At Least Not the Natural Way.

In medical terms, after one of your ovaries releases an egg, your progesterone levels are supposed to rise. If yours doesn’t, your uterus won’t be thick enough to receive the fertilized egg. If it’s not thick enough, the egg won’t implant properly. As a result, you won’t be able to get pregnant. Now personally, as a woman, this is really fucking sad. But it’s not a deal breaker. I say that because far too many of us are given the impression that endometriosis invariably means infertility, which is not always the case.

Plus, there’s something called adoption or surrogacy. So I’ll cross that bridge as it comes.

Because I don’t know for sure yet either way. Unfortunately, though, ladies with this condition will have a significantly lower chance of getting pregnant. According to the American Society for Reproductive Medicine, endometriosis can be found in up to 50 percent of infertile women and those with endometriosis typically deal with infertility about 50 percent of the time. So yeah, the odds aren’t in my favor but you won’t see me stop.

5. Until Then Though, It’s Safe to Say, I’ll Probably Gain Some Weight.

I’m sure those who know me are thinking, “This is a good thing, Macey.” It’s just, I’m scared. I have this irrational fear of gaining weight. There. I said it. I know. I know. I’m skinny —probably too skinny. And I’ve never been fat a day in my life. I like it like that. I like being thin. At the same time, I don’t because most days, I feel like shit. What’s the point of looking good if you don’t feel good too? So yeah, I’m well aware that I could use a few extra pounds, which I should be able to do more easily now that I’m on birth control, a hormonal therapy for girls like me.

I should add this isn’t my first time on it. It’s just, I was told because of this gene mutation I have (more on that later) that taking it would accelerate my chances of breast and ovarian cancer that much more. Because birth control pills have side effects, including an increased risk for certain cancers. Except, one of my new specialists found one that’s safe for me and all my shit. And let me say, I’m so excited. I’ve been on it for nearly a month and already, I feel the difference. It really is working.

Now, this hormonal treatment I’m on won’t “cure” endometriosis because there isn’t one.

But it’s supposed to help manage my pain by controlling my periods. Hormonal therapy, a.k.a. oral contraceptives are actually used for many reasons other than preventing pregnancy. Remember a few minutes ago, when I told you about progesterone deficiencies, its symptoms, and estrogen? Well, the pills I take contain those exact hormones (similar to the ones normally produced by my ovaries). So all of those awful things I’ve been dealing with are primarily gone. I have no words. And I mean that, in the best way.

My pimples are drying up. My skin isn’t cracking. I’m not as tired as I used to be. I haven’t woken up sweating in weeks. I’m still craving sugar (hey, I’m only human) but my cognitive skills are sharper and my joint pain is way down. I haven’t had a period yet (since starting birth control) but I’m supposed to any day now and besides wanting to eat the entire kitchen, I don’t want to kill anyone.

My blood isn’t boiling and I don’t feel the need to have a bitch fit either. In fact, I feel even better now that it’s out there. I mean, all of this shit has been swirling in my head on a loop. But I’m done keeping it locked up. I’m done with the embarrassment. Because the fact remains, I’m 1 in 10. So yeah, you may not be able to see it, but I feel it. My pain is real and I’m not crazy.

My point here is, endometriosis is tricky on its own —even before you open your mouth.

I mean, this disease only affects women, it takes nearly a decade to properly diagnosis, and even then it usually gets mistaken for something else. It’s just when it comes to our health, we have to fight hard to be taken seriously. Oh, and if we want to be heard, well —we have to scream. But if we aren’t willing to talk openly amongst one another then how the hell are we going to be heard in the doctor’s office, the emergency room or anywhere for that matter?

And you know what? It’s alright if you cry along the way. You’re allowed to freak out. You’re allowed to go crazy —just don’t give up. Because your pain is real but so is hope. And if you’re in a dark place today, that’s OK. Even if you can’t get out of bed or leave the house, that’s OK too. Because every day is a battle. Some days, you’ll demolish everything in your path. While others, you’ll hold on for dear life. Either way, you’re a fucking warrior.