“What does endometriosis feel like?” This is a question many ask – and wonder if their pain might be being caused by Endometriosis. In this post, I share what my pain feels like – along with descriptions for other women as well.
I woke up this morning and discovered that March is Endometriosis Awareness Month.
Since my diagnosis, I have wanted to share a bit about my experience so I could hopefully help someone else.
Because honestly – if it hadn’t been for the Internet, I may not have gone down the path I did to discover I had Endometriosis.
Yes – sometimes Dr. Google and random Facebook groups full of non-medical professionals can be helpful.
After I had my Endometriosis surgery back in October, I got tons of questions from people.
The most common ones?
How did I know I had Endometriosis – and what does Endometriosis feel like.
In this post, hopefully I can answer both those questions!
Originally written in 2019. Updated in 2020.
Table of contents
What Does Endometriosis Pain Feel Like?
How to Explain Endometriosis Pain – My Version
Today, I want to talk about the latter, because I feel like Endometriosis pain is some of the most misunderstood and dismissed.
Endometriosis is a highly individual disease, and the symptoms can vary – including the pain.
Some women – even in their most advanced versions of the disease – don’t feel anything and don’t discover they have endometriosis until they are being treated for another problem (such as infertility).
But for the majority – the pain can be unbearable. It can cause you to miss school, work, or time with your family.
It can make you come across as a flake when you constantly have to cancel plans because you “feel sick” (because that’s the simplest way to explain it).
It can make you feel like you are dying.
And it can just get worse and worse – and without a diagnosis and proper treatment – you can feel like you are going crazy. You might just get to a point where you’ve accepted you will be in pain that is so misunderstood and misdiagnosed for the rest of your life.
Although it’s an incurable disease, I can’t tell you the relief I felt when I woke up from my surgery and was told they found endometriosis “everywhere that they found it.”
Because at least I had a name for what I was going through.
I most often would describe the pain I was in as someone putting a knife in my abdomen and twisting it around.
Forrest would occasionally point out that I’ve never actually had that happen to me (thank goodness), but I can’t imagine it would feel much worse.
I would often find myself doubling over in pain, having to lay on the couch for hours because standing was impossible.
The pain didn’t usually go away with laying down.
The pain would be so bad that I would get nauseated. I would often wonder if maybe I was pregnant because I would feel so sick.
Where is Endometriosis Pain?
It can actually be felt all over the body – while it’s most commonly centralized in the abdominal area, it’s not uncommon to have it other areas, such as :
- In the legs – it’s often misdiagnosed as sciatica pain
- Back – typically the lower back but can be all over
- Vaginal Pain
- Kidney Pain
- Pain with urination
Did you know that Endometriosis can cause pain in the legs?
Because mine did. Often misdiagnosed as sciatica pain, Endometriosis can cause similar pain.
Pain with Ovulation – Mittelschmerz
I would have some of my worst pain around the time of ovulation – this is often referred to as mittelschmerz. And it’s common with Endometriosis.
I couldn’t even function. I would describe it similar to early labor contractions, and I would often just feel like I was being punched in the gut. It would radiate to other parts of my body, and I would literally double over in pain.
During my period (and shortly before), I would be bedridden for a while. I couldn’t get up because the pain was excruciating.
How I finally got my diagnosis
The pain and symptoms got significantly worse when Oliver was about nine months old.
That’s when I started looking into doctors again – for a diagnosis other than IBS (which I do believe I actually have. However, it is one of the most common misdiagnoses for Endometriosis).
My sister asked me if I had looked into Endometriosis.
So I started Googling. And it all made sense with my symptoms.
However, the doctors I saw dismissed me. Said that I had children, so they doubted it was Endometriosis.
That even if I had it, they wouldn’t do anything but put me on birth control.
And then when I randomly asked in a local Facebook group for a recommendation of a doctor who understood Endometriosis, I finally found the path. A girl commented about a doctor about an hour away who was the best in Colorado. She invited me to join a Facebook group of women who struggled in a similar way.
It took months to get in to see him, but I immediately felt relief when he said, after listening to all my symptoms and doing a physical exam, “I believe your diagnosis is correct of Endometriosis.”
Endometriosis pain is real. It’s not just “bad cramps” and something you just have to deal with.
It’s not something you just need to suck up.
It’s a horrible, debilitating disease that affects 1 in 10 women.
And if you are having any of the similar
How Others Describe Endometriosis Pain
- Excruciating, and debilitating
- It feels like someone is scrapping inside my pelvis with a wire grill brush! Stabbing, throbbing, achy, shooting horrible pain
- Draining, horrible, sharp, dull, achey
- Sharp, dull, constant, like there is barbed wire wrapped around my body and I’m stuck in the middle of a cactus patch, and like there are knives and needles scrapping up and down my pelvic walls and vagina.
- There is no way to describe it. It’s like trying to explain what a hamburger tastes like.
- Twisting/Stabbing/ Pinching pains that make it impossible to move or walk when it hits. Curl up in a ball and cry.
- My pain is excruciating. I literally double over, laying in bed all day long. Tylenol, ibuprofen, and Advil…that’s a joke and doesn’t touch the pain at all. I even had one Dr. prescribe me Dilaudid, all that does is make me feel loopy. Doesn’t touch my pain either. It hurts all over…my abdomen, my back, my legs, even my arms hurt sometimes?! Just everywhere. The pain isn’t limited to my abdomen where you would it would be. I’ve recently tried “topicals” and that seems to be the only relief I can find.
Relieving Endometriosis Pain
There’s no endometriosis pain treatment that will work for everyone. Most women go through many different types of pain control methods to find something that works.
And for many – it’s only temporary relief.
For me, I found the most relief by using 800 mg of Ibuprofen 2x a day, a TENS device, and acupuncture. While none of those things helped long-term, they did bring short-term relief, which made a huge difference.
I wrote a post a few months ago about endometriosis pain relief that has other ideas that might help you.
Don’t suffer in silence! If you are experiencing anything similar to what is mentioned before – seek help (and seek it again and again until someone takes you seriously). Endometriosis is a miserable disease – but there are ways to manage it.