What does endometriosis feel like?
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What does endometriosis feel like?
What does endometriosis feel like? What does endometriosis pain feel like? Does endometriosis cause mood swings? Macey Bee answers these questions about endometriosis and more.
Before describing what does endometriosis feels like, I need to begin with the story of my endometriosis diagnosis. Before being diagnosed I had been complaining of pain for a while. However it was hard to put into words exactly how I felt, and I think that was and remains one of the problems I have when it comes to describing what does endometriosis feels like.
I knew something wasnβt right inside me. I mean, itβs not healthy to feel sick all the time. But after visiting multiple doctors βall telling me I was fine, why wouldnβt I believe them, even if I felt ill? They wouldnβtΒ gaslight me? Would they?
I mean, theyβre the ones with a medical degree, right? Itβs just this thing is tough to figure out.
I remember googling my symptoms
Each click led me closer to the truth (or closer to my death lol since per Wikipedia said I died three days ago; you know how it goes). My truth. Something I didnβt understand until I started advocating for myself.
Like I said, for a while now, Iβve been really sick. I just didnβt know. I didnβt 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.
Iβm a hypochondriac, so itβs all in my head, right? Wrong. Iβm not crazy.
Did you know ten 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 didnβt βmost likely since no one wants to openly discuss this shit.
Itβs just when you google βwhat does endometriosis feel likeβ you discover these sites fail to mention all of theΒ endometriosis signs and symptoms.
They really only say endometriosis feels like painful periods, which for the record Iβve had my entire life. Except, they leave out the debilitating migraines, brain fog, and mood swings. No one talks aboutΒ severe anxiety, fatigue, andΒ 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 didnβt know that knee pain, back pain, specific food intolerances, and vitamin deficiencies are also associated with endometriosis symptoms.
Oh, and if youβre peeing a lot, thereβs a reason for that too. ButΒ Iβm a diabetic, so my sugar must be high. Nope. Even when Iβm in range, I have to pee like every five minutes. I have to pee so much that itβs starting to affect my quality of life. And donβt get me started on the hormonal acne Iβve been dealing with, which is actually how this whole thing started βat 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.
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Read more:Β βMaybe you should lose weight?β How doctors gaslight women like me
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The doctor literally told me that I was feeling like shit because IβmΒ anorexic.
βI know your type,β she says. But you donβt. βI see girls like you come in all the time, and itβs always the same thing. Youβre not eating enough, so youβre tired, and thatβs why you feel the way you do. But to put your mind at ease, Iβll give you an ultrasound just to prove thereβs nothing wrong down there.β
Except, in this case, she was wrong, and I was fucking right. Patients shouldnβt know more than their doctors. I donβt blame her, though. Because yeah βphysicians are trained to deal with thousands of conditions.
Itβs just, they donβt always immediately recognize the endometriosis symptoms because they overlap with other disorders. Plus, like Iβve already established, itβs hard to articulate or even pinpoint the pain I feel, so itβs not really a surprise that doctors canβt either. That said, a few pokes and prods later and there it was. They found multiple endometrial cysts on my left and right ovaries βanother keyΒ endometriosisΒ symptom.
From there, I was sent to an endometriosis specialist.
Finally! An endometriosis diagnosis
Make it three. Long story short, I had my answer. Endometriosis, which for the record is a painful disorder where tissue that usually lines the uterus grows outside instead. In short, whatβs outside down there should be inside, and no one knows why. Itβs not my fault either. I was told since I didnβt get my period until I was 18, I had whatβs calledΒ 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. It becomes endometriosis.
When endometriosis involves the ovaries, like in my case, cysts called endometriomas form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions βabnormal 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 to be diagnosed with endometriosis. Finally. Vindication. Confirmation. I am believed. Itβs just after the initial shock wore off I realized I have yet anotherΒ chronic condition. Living with endometriosis would have to become my new norm.
Telling my family about my endometriosis diagnosis
I canβt. 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 βlong, 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? Youβre not better? Why arenβt you better? Are you feeling better? When will you be better? You look well. You donβt look sick. Tell me again, why canβt you eat that? What is the plan? What does endometriosis feel like? Do you have a plan for living with endometriosis?
What will you do? Make sure you do it. Are you going to do it? I donβt think youβll do it. Please do it.Β Have you tried yoga? Have you considered meditation? Have you tried not eating dairy? How about nutrition?
Medication is harmful to the body, and youβre an addict. All those chemicals. You canβt take that. What are you going to take instead? Can you have babies? DoesΒ endometriosis make youΒ infertile? You should have a baby. You should start having babies. Why arenβt you having babies? Are you better? We canβt wait for you to feel better βto get back to normal.
βWe just want you normal.β
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. This is what endometriosis feels like to me.
What does endometriosis feel like? It feels like my new normal. Normal is now tiredness. Exhaustion. Itβs feeling slow. Withdrawn. Feeling sick. I am sick. Iβm in the toilet. In the bath. In the sink at a party. At a relativeβs 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 my breath and counting. Waiting for it to stop. To get worse. To come back again. Normal is nowΒ living with endometriosis.
Itβs exhausting living with endometriosis. And itβs all hidden behind clothes. Not seen. Not talked about. Embarrassing.
But itβs not βat least it shouldnβt be. Except, it is according to society. I get it, though. The nature of this disease and the shit we deal with are considered βTMI.β Essentially, weβre supposed to filter what weβre experiencing because itβs unpleasant? Not anymore and definitely not here. For the conversation to begin, you have to understand what it is weβre talking about. Β And just how much endometriosis affects everything. So this is what itβs like living with endometriosis (at least for me).
What does endometriosis feel like?
1. Endometriosis is 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 canβt 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 doesnβt have you doubled over, crying βsick to your stomach from pain. A normal period doesnβt affect your other organs. Itβs not supposed to hit you harder than the flu. It shouldnβt cause you to miss work.
But it does. Because itβs canceled plans and lost friendships.
Because a normal period doesnβt completely take over your life. Thatβs the thing, though βI was never normal. Thank god my boyfriend doesnβt hold anything I say during this time over my head. Because I can get mean. PMS is real, people. Itβs like why am I 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 Iβm describing here isnβt just once a month (although heightened during menstruation), itβs nearly every day.
2. With endometriosisΒ the lower half of me hurts most of the time.
What does endometriosis feel like? It feels like my body hates me all the time. As if being aΒ type one diabeticΒ isnβt enough. Ugh. My pain radiates. It starts off quiet, low in my abdomen. Then it gets louder, more sharp, more twisting, pulling βuntil itβs completely taken over. It feels like someone has ahold of my insides, and theyβre slowly wrapping them in barbed wire (like youβd wrap a Christmas tree in lights). Itβs the worst type of pain Iβve experienced. And it gets worse depending on what I eat.
In fact, Iβve 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 itβs not worth it. Plus, chances are Iβll wake up with a few extra pimples (because this shit causes acne). So yeah, itβs annoying, but hormones are worse.
3. Hormones really are a bitch when you are living with endometriosis
I never realized how much hormones control and affect just about everything inside of us βeven how we act and choose to behave on the outside. I mean, I didnβt willingly want to start hysterically crying at the check-out line in Bloomingdales a few weeks ago. But thatβs the thing about endometriosis symptoms. Mood swings. Theyβre 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 βspecifically, 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 donβt have enough progesterone, estrogen becomes the dominant hormone, which may cause symptoms like the ones above as well asΒ depression, anxiety, and you guessed it βmood swings. I was living with all of these damn signs, and yet, I was deemed okay? No. I wasnβt. I should also add that progesterone is vital during the childbearing years. If you donβt have enough, you may have trouble getting or staying pregnant.
4. Iβve made peace with the fact that I most likely canβt have kids βat 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 doesnβt, your uterus wonβt be thick enough to receive the fertilized egg. If itβs not thick enough, the egg wonβt implant properly. As a result,Β you wonβt be able to get pregnant. Now personally, as a woman, this is really fucking sad. But itβs 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, thereβs something called adoption or surrogacy. So Iβll cross that bridge as it comes.
Because i donβt know for sure yet either way. Unfortunately, though, ladies with this condition will have a significantly lower chance of getting pregnant. According to theΒ 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 arenβt in my favor, but you wonβt see me stop.
5. Until then, though, itβs safe to say, Iβll probably gain some weight.
Iβm sure those who know me are thinking, βthis is a good thing, Macey.β Itβs just, Iβm scared. I have this irrational fear of gaining weight. There. I said it. I know. I know. Iβm skinny βprobably too skinny. And Iβve never been fat a day in my life. I like it like that. I like being thin. At the same time, I donβt because most days, I feel like shit. Whatβs the point of looking good if you donβt feel good too? So yeah, Iβm well aware that I could use a few extra pounds, which I should be able to do more easily now that Iβm on birth control, hormonal therapy for girls like me.
I should add this isnβt my first time on it. Itβs 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 diseases. Except, one of my new specialists found one thatβs safe for me and all my shit. And let me say, Iβm so excited. Iβve been on it for nearly a month, and already, I feel the difference. It really is working.
Hormonal treatment helps: but it isnβt a cure
Now, this hormonal treatment Iβm on wonβt βcureβ endometriosis because there isnβt one.
But itβs 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 Iβve 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 isnβt cracking. Iβm not as tired as I used to be. I havenβt woken up sweating in weeks. Iβm still craving sugar (hey, Iβm only human), but my cognitive skills are sharper, and my joint pain is way down. I havenβt had a period yet (since starting birth control), but Iβm supposed to any day now, and besides wanting to eat the entire kitchen, I donβt want to kill anyone.
My blood isnβt boiling, and I donβt feel the need to have a bitch fit either. In fact, I feel even better now that itβs out there. I mean, all of this shit has been swirling in my head on a loop. But Iβm done keeping it locked up. Iβm done with the embarrassment. Because the fact remains, Iβm 1 in 10. So yeah, you may not be able to see it, but I feel it. My pain is real, and Iβm not crazy.
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Read more:Β The skinny on βwomenβs healthβ
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My point here is, living with endometriosis is tricky β even before you open your mouth.
I mean, endometriosis only directly affects women, it takes nearly a decade to properly diagnose, and even then it usually gets mistaken for something else.Β Itβs 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 βwe have to scream. But if we arenβt willing to talk openly amongst one another, then how the hell are we going to be heard in the doctorβs office, the emergency room, or anywhere for that matter?
And you know what? Itβs alright if you cry along the way. Youβre allowed to freak out. Youβre allowed to go crazy βjust donβt give up. Because your pain is real, but so is hope. And if youβre in a dark place today, thatβs okay. Even if you canβt get out of bed or leave the house, thatβs okay too. Because every day is a battle. Some days, youβll demolish everything in your path. While others, youβll hold on for dear life. Either way, youβre a fucking warrior.
Never forget that.
Xoxo,
Macey bee

Macey Bee
Mental health issues are nothing to be ashamed of. Iβm a writer to the bones. Quotes and music are my life. Letβs change the world one word at a time.
Caption:
Did you know 10 years is the average length of time it takes to receive a diagnosis?