Hey friends! It's been two weeks since I first publicly told you about my endometriosis diagnosis. Today, I thought I'd share a bit more how having endo has reshaped my life.
I will warn you, if you're a bit squeemy talking about bodily functions, this is not for the faint of heart. Endometriosis completely sucks and a lot of the symptoms are gross. But I feel like it's important to share this knowledge. This journey has been very hard on me, and I wish that I'd gotten more information about it sooner. I never imagined a day where I'd be telling the world about my bodily functions here on my magical blog. But here we are. And I'm totally mortified, but I'm going to do it anyways because I think this is important... even if it helps only one other woman or girl know that she isn't alone.
Still here? Ok, let's dive in. I guess the first place to start is to answer the question, what is endometriosis? A quick Google search will tell you that it's a condition where tissue similar to the lining of the uterus grows outside of the uterus. It's usually found on the ovaries, fallopian tubes and other body parts in the pelvic region. It's a chronic disease that causes painful symptoms and can affect fertility. There is no known cause for it as of right now. There are ways to treat symptoms, but there is no cure.
There are a lot of endometriosis symptoms... and I can tell you from experience that many of them are pretty easy to explain away. (As in, my stomach pain/bowel issues are because of something I ate.) It's when you start to have most of them, or in my case ALL of them, that things finally begin to click. Obviously, symptoms can be different for everyone, but these are the things that I've personally experienced.
Let's start with the digestive issues- bloating, constipation, diarrhea, nausea, etc. I can't even begin to describe how awful this is. I've had severe stomach bloating, cramping and lots of stomach pain. Some form of "my tummy hurts" is probably the phrase that I've uttered the most over the past year and half. The cramps are fairly constant... and occasionally I'll experience a stabbing pain where it feels like I'm actually being stabbed in the stomach. Super fun... not.
There are days when my stomach is so bloated that it's sensitive to touch. It feels full and hard and I can't touch my stomach at all. The water hitting me in the shower hurts. My underwear and pants hurt. There are days when I daydream about laying in bed on my back completely naked with nothing touching my stomach... not even the sheets.
Lately, I've actually been wearing maternity bike shorts most days. I realized that all of my "normal" shorts hit the part of my stomach that can't be touched. I was so excited when I realized that maternity pants would sit higher up on my stomach. I quickly bought two pairs from Torrid to try out, and they've literally saved me from having endo flare ups daily. (I wanted to buy a few more pairs, but they sold out of my size before I could get them.) Wearing these has been a lifesaver though. I now know why I've been miserable the past few summers... because my shorts were hurting me.
Endometriosis has destroyed my digestive system. (I'll preface the rest of this part with the classic reminder that "everybody poops" before I share the rest of this mortifying information with you.) I've experienced both constipation and diarrhea. There was one Memorial Day weekend a few years ago that Eliot and I were at my parents' house and I was so constipated that I was quite literally praying to God to just let me fart. My stomach hurt so much that I felt like I would burst. Eliot had to continuously rub my lower back to try to help relieve the back pain. And I was laying in bed for hours massaging my stomach trying to work gas pains out. It was awful.
If that wasn't fun enough... the major digestive issue that I have experienced is that I have excruciating pain during bowel movements. There have been a few times when I've had my period that I've literally thought I was going to pass out from the pain. Picture yourself sitting on the toilet just trying to go #2 and you're in so much stomach pain that you think you'll die. It's felt like what I imaging giving birth would. I've almost had Eliot take me to the hospital a few times... it's definitely scary and not pleasant.
Then there's the bowel movements themselves. Even if they aren't awful and painful, they become irregular. If you're a person who usually goes once a day, endometriosis might make you go twice a day. Frequent bowel movements are normal for me now. Thankfully, I work from home so it isn't usually an issue. The past two weeks or so... I'm a three time a day girl. Again, not usually an issue. The issue becomes when you're trying to leave the house to have a life. Days we go out for Red Sox games or other day long activities get tricky. I'm literally trying to get up early enough to go poop before we leave. Then it's pretty much the first thing I do when we get home and by then I'm already in complete agony & pain. And I can't help it one bit.
There's also the nausea. This has definitely been hard to navigate. It comes up any time for any reason. I'm hungry and I haven't eaten enough... nausea. Eliot's lightly tapping his leg without realizing it... nausea. A few bumps in the road during a car ride... nausea. The smell of something random... nausea. Thankfully, none of these things have caused me to actually get sick... yet anyways. But I've basically gotten used to feeling nauseous most of the time. However, there have been a few times when I've had "food poisoning" when I've thrown up and looking back I think they've actually been endometriosis flare-ups... but I'll save that fun tidbit for another post.
So while we're already talking about bodily functions, let's dive into urination. Having endometriosis means that you might also have painful urination. There have been many times where I've felt like someone was literally digging their hands up under my belly as hard as they could when I'm simply going pee. (Side note: I actually dug my hands under Eliot's belly while trying to explain to him how it felt and he was yelling out in pain... so yes, it does hurt a lot.) It's definitely worse during my period. There have been a few times where I'm literally yelling out in pain while peeing. And sometimes it happens when I'm not on my period... so that's fun.
The latest and greatest thing is that I'm having frequent urination. My cyst is causing all kinds of chaos inside of me. I experience a fullness that makes me feel like I need to pee... even if I don't. I can't tell you the number of times I've 'had to pee' and barely anything comes out of me. It's incredibly annoying. I feel like I need to pee all the time now. And I catch myself going often if I'm out in public because I never know when I'm actually going to have to go. So now I just go all the time to be safe.
We're already talking about bodily fluids, so let's just keep rolling along into periods. I could probably write an entire post separately about having your menstrual cycle with endometriosis... but I won't do that to you (or myself... because who wants to write that?!?!). Let's just say that endometriosis is best known as causing painful periods... and let me tell you... there's a reason for that. You want to talk about absolute hell? That's it. The cramps are a million times worse. The menstrual flow is heavy... and blood clots are plenty. There have been times it's literally pouring out of me. I've thought I was going to over-bleed. And I've already mentioned my touch and go moments during urination and bowel movements. So I'll just leave it at that.
Let's move onto another awkward endometriosis symptom instead... the pelvic pain. There's pain, pressure, spasms. It's a whole host of fun. I've experienced weird things that I call vaginal muscle spasms. There have also been a few uncomfortable times when I'm just minding my own business and suddenly it feels like someone is literally stabbing me in the vagina. There's really no rhyme or reason... just stabbing pain.
But the pain that bothers me most is definitely the lower back pain. It's constant and unrelenting. It never goes away. I should give it a name... because it just lives there with me. It's gotten pretty bad recently. I actually could barely walk the other day because my back hurt so much. And there aren't stretches or exercises I could do to help right now... because giant cyst in my stomach. I can't do anything that might pop or agitate that- so it's pretty much as many back massages that Eliot can give me right now. There's also upper back pain, mostly near my shoulders and neck- but that doesn't feel like it's as much of a burden.
A weird endometriosis symptom that isn't common is rib pain, chest pain and shortness of breath. There are actually cases where endo can affect the diaphragm causing these problems. I'm pretty concerned about what they'll find when they do my surgery... because I have had rib pain, chest pain and shortness of breath.
Two other symptoms of endometriosis are painful sex and infertility. I'm not going to get into either one of those right now... because frankly I've already spilled enough personal details about my life. However, I will simply remind you that I've checked off all the endo symptom boxes, so I'll let you come to your own conclusions about that.
Finally, the symptom that's driving me crazy the most is the fatigue. Now that we know what's going on with me, I can see how badly I've declined these past few months. There have been been small hints ... me dozing off at a hockey game inside a busy arena, or nodding off on a short car ride. It used to be small things like that. Lately, it's been unbearable. I could go upstairs and nap at pretty much any given moment. And sometimes I do. My sleep schedule sucks... my poor body doesn't know what time it is anymore. I try to keep a normal schedule, but there really isn't a point to it. At this point, if I'm tired enough to need a nap, I just go take one. I know my body is fighting so hard that it needs the rest... so I just succumb to it.
And there you have it! These are the endometriosis symptoms that will help get you diagnosed... or at least heading in that direction. I would also like to remind everyone that they're not fleeting problems... I have a combination of these fun things happening daily. And I never know what each day is going to bring. That’s why endometriosis is a 'chronic illness'… because the symptoms of it are chronic. But for me, chronic has pushed the boundaries to constant. It’s constant pain, exhaustion and discomfort that I’m experiencing… because unfortunately we passed 'chronic' a long time ago.
And before you think we're done... nope! Because there’s more fun in store for anyone who has it. Obviously different people present with different symptoms. So this next section is symptoms that aren't specifically endo symptoms, but are things I'm currently experiencing. I'm learning new things about this every single day, and I've recently learned that these issues can happen to people with endometriosis.
First, we have brain fog. Yup, this is apparently a thing. Fun fact: you can actually get endo on your brain. I'm not saying I have that. But I have noticed that I'm more of a space cadet than usual. I've always had the capability of being a little bit overstimulated and flighty... kind of like a cute golden retriever. But lately, I feel like it's gotten worse. If I don't write something down, I will not remember it. Simple as that.
Next up is sciatic nerve pain and hip pain. I've had this for years... so I'm not sure if the endometriosis has anything to do with it or not. But I do know that my hip pain has gotten really bad lately. I guess we'll find out soon enough when I have my surgery.
A fun one that I'm currently having is severe heat sensitivity. The summer is already hot enough without this. I've always been more sensitive to heat than the average person... but add all of these other fun endometriosis symptoms and it's a real treat. Right now, I'm very much an indoor cat. When I do venture outside, I make sure to take extra care to stay hydrated and keep myself in the shade and cool spots as much as possible.
I think my favorite random symptom is the weirdness about hunger. (And I haven't seen anyone else in my endometriosis support group ask about it... so who knows how insane this is.) But I'm having a very hard time knowing if I'm hungry or not. I've always been someone who clearly knew when she needed food. Nowadays... it's not that easy. My usual appetite is gone and it's currently all over the map. Some days I barely eat. Other days I stuff myself. I've caught myself realizing too often that I've missed meal times. There are also times when I suddenly get very nauseous and there's no explanation for it... until I realize that I might be hungry. I never used to be someone who would stuff their face when they felt nauseous, but now that's my jam. Because hunger seems to be the #1 reason when I am feeling nauseous. I'll eat something, even if I'm not hungry, and a few minutes later I'll feel better. It's the weirdest thing.
Finally, I've saved what's probably the most infuriating symptom of endometriosis for last... what I've dubbed the Endo Mental Gymnastics. Clearly, it's not a real, tangible physical symptom. But if you have endometriosis, the mental gymnastics are definitely something that you'll experience in some form. And it also comes with a shiny free membership to Medical Gaslighting Anonymous!
But in all seriousness... this has been THE ABSOLUTE WORST. The mental strain that I have gone through over the years has been ridiculous. And it's only now that I know what's wrong with me that I can look back and see how terribly I've been treated in the past. Doctors will tell you that your symptoms are from all sorts of issues... and some girls are told that it's all in their heads. (Thankfully, that hasn't happened to me...) At my last pap smear, I had a nurse practitioner who basically told me that my messed up periods were because I was fat. (Fun Fact: When I told my surgeon that, he was so mortified that he almost fell out of his seat!) So for years now, I've quite literally blamed myself for the pain I've been experiencing... because I was fat and it was all my fault.
Endometriosis isn't anyone's fault. If you have it, you have it. There's nothing you did wrong to cause this. And I tell myself that all the time. It's awful and I wouldn't wish these symptoms and this pain on anyone. But I also know that I'm a fighter. For years I've been suffering in silence... and I think it's time to be free from the shackles. Sharing my diagnosis publicly hasn't been easy for me... but I think it's important to talk about it it authentically as part of my journey... even if it isn't very magical. 💛🎗🌻
