“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!
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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.
Katie is a Colorado-native, BYU graduated, and most importantly, wife to one and mother to three beautiful boys. She is passionate about sharing her experiences with others – especially about pregnancy, breastfeeding, cooking, and crafts. She is currently training to be a Certified Lactation Educator. She loves spending time with her family and helping others find joy in family life.
I was diagnosed years ago but was told by my dr that I suffered from endro early on most likely when I got my first period,,,I have four beautiful children however I also lost four pregnancies 😢….I would also be bedridden due to the pain that felt like someone was stabbing me repeatedly and every time to date that I urinate or go #2 my insides feel as though they are going to fall out! I recently had an ultrasound that showed my ovaries are covered in cysts , I have kidney stones and a growth in my uterus, which now I need a biopsy done…Endrometriosis is a progressive disease that seems to have no cure in site,,sure you can have all your insides removed but that just opens up for more problems with other parts of the body (from what others have posted on other sites ) so really we are suffering until when?! I’m so beyond stressed most days and to top it off I my husband is sick himself, I get scared for our children, what if I can’t raise them and I know my husband can’t due to his condition, I’m the source of our income and support for my family…I may have vented, the struggle is so real for all women who suffer endo..
I am so sorry Kim. My heart goes out to you – it’s such a terrible disease that takes so much from us 🙁
TENS unit where? On your abdomen?
I’m almost excited to try this!!!
Okay, I’m not excited for my next bout of pain, but when it does come, I’m interested in trying the TENS…
Yes! On my abdomen 🙂
Isy Dickinson says
Hi ladies…reading this makes me so emotional…it brings flash back to when i was i so much in pain and distress….all of thos symptomes..i had them for years..destroying my life….i had 2 ops and still full of it…attached everywhere to the point where i can’t have anymore operations without putting different organs at high risks…1 gyneco told me:”the best thing i can wish for you is an early menopause”…i am 45. I take birth comtrol in continue and i was so lucky and blessed to have a son 12 years ago…lost my second one at early stage of pregnancy…
I am ‘well’ since a while…but went through depression and weight gain….worried about how i am going to know when i will be in menopause as i am so terrified to stop my pill……so scared of the pains…those pains….
I was lucky enough to be taken seriously by a female GP when I told her I thought I had ovarian cysts. A diagnosis of severe endometriosis causing ovarian cysts came reasonably fast. I’m awaiting surgery and taking birth control in the meantime. The birth control pills have definitely reduced symptoms while I’m waiting for surgery
I was wondering, what can you do to get a doctor to take you seriously? Haha, I got sciatica only during ovulation and my period, but apparently it’s a muscle?? And my IBS patterns follow my period as well…and my periods are now 20-22 days apart.
Ugh, this is the worst, and I HATE that it’s so hard to get doctors to take your issues seriously. I think a lot of them just see so many people in pain that they think everyone is making it up. Which is terrible. I think taking detailed notes about your pain and when it happens can help. But also just asking around to find a doctor who does take Endo seriously. Nancy’s Nook has some great suggestions!
I went to an obgyn because I have horrible period cramps and cyst on my ovaries. I was looking for help in fertility because I only have 1 kid that’s 11 and I want more children. I looked up endometriosis pain and I know that’s what I have. My Dr. blew me off gave me birth control for my cyst that worked but I stopped taking it because it was expensive. Long story short once I stopped the pain came back worse. And now even when I go to the restroom it hurts right in my uterus. Even just laying down I’m in so much pain. Feels like my insides are twisting.
I am so sorry, Jasmine! It’s so hard when your doctor blows you off. Definitely join Nancy’s Nook on Facebook and see if you can find a better provider near you.
In the very early stages of your endometriosis, was your pelvic pain regular (for each of your menstrual cycles) or was irregular and then the pain became regular and increased with time? Thanks for sharing your precious story.🙂
I would definitely say it increased with time for sure.
I have been going to Dr after Dr and just getting dismissed as having “bad cramps” because I have had a baby. So they doubt that anything is actually wrong with me. It is the most frustrating thing in the world, knowing something is wrong with you but having Drs tell you no and not even checking for it! I live in upstate New York so I am currently looking for yet ANOTHER Dr that will hopefully listen to me about what is going on.
I hope you can find some answers <3
Diane Smith says
I am 68 years old. I had uterus removed because of this horrible disease when I was in my thirties. I was in so much pain I thought about driving off the side of the road on my way home from work. I would start my period in the middle of the night and would wake up and almost had to crawl to bathroom to get in a hot tub of water and cry. The worst thing of all my husband did not understand the pain. He actually was so mad at me that he would not help me with anything. He fixed me nothing to eat no coffee nothing. I could not stay in bed. I went to the kitchen to fix me coffee and my stitches broke and I bled on the floor. Had to go to doctor and he gave me shoots for 2 days. I cried then too. I could go on and on but, I think having the hysterectomy was the best thing I ever done. Free of the pain now.
Chelsea Johnson says
This sounds so miserable, and I’m glad you were able to have surgery last year! Thanks for sharing for other people can get the help they need, too!
Katherine Kopasz says
I have also been diagnosed with endometriosis. I also in Colorado and was wondering who your doctor was?
Thank you so much for your help!
Hi, Katie! I saw Dr. Brian Nelson in Longmont 🙂 Please let me know if you have any other questions!
He saved me too!! Omg is he a life savor!the second I read “Colorado” and “doctor who finally believed me” I just knew it had to be him!!