Wednesday, August 21, 2013

For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?

I've tried for a long time to find a way to explain how endometriosis physically feels, to someone who doesn't have it.

It's not a question that I receive often, but since we harp so much on the fact that it's different than cramps, I feel that us endo-girls kind of owe the rest of you an explanation as to what it does feel like, you know?

Many women with endometriosis associate their pain with the term "flare up." I think most times, this is referring to the severe pain. Not the daily pain that many women deal with, but the times when it gets really bad. The Emergency Room times. The Percocet times. The how-the-hell-am-I-supposed-to-get-out-of-this-bed times.

I posed the question to an endometriosis Facebook group and received some helpful and honest answers. Keeping in mind that every woman is different, some may find several or all of these to be true in their case, some may not relate to any of them. But these were the most common answers.



What does an Endometriosis flare-up feel like?

It feels like someone is grabbing your insides and twisting them as tightly as they can. Like the "rug burns" that children give each other on the playground by twisting the skin on their arms, but inside of your pelvis and abdomen.

Like recurring, nonstop, appendicitis. Many women with endometriosis are actually misdiagnosed with appendicitis! I never had it, but I've been checked for it via ultrasound multiple times in the ER when I've gone in with endo pain. I heard from several ladies who have experienced both and said that endometriosis is similar or worse. Even one whose "appendix almost ruptured due to [her] high pain tolerance from endo." Yikes, girl!

Like a dull knife making quick jabs into your abdomen repetitively for days.

It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Like pushing on a sprain or digging your thumb into a fresh, deep bruise.

It feels like the worst food poisoning you can imagine. Your muscles are tight, you're nauseous, dizzy, and there is an uncontrollable, sharp, pain in your stomach.

Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there's a lingering pain from the burn.

There are many opinions about comparing endometriosis to labor pains, by the women who are lucky enough to experience both. (Endo is one of the leading causes of female infertility) More often than not, I hear that the pain is similar, but some mamas argue that endo is worse. I heard from two mothers :

            "When I had my daughter, early labor and transition labor felt identical to endo pain." 

            "I had very long and difficult labor with my first born (almost 10 lbs).... 
            Giving birth without epidural twice, I can say that for me endo is 
            much, much worse than giving birth without epidural."


It's throbbing. Aching. Ringing in your ears. An entire body feeling overheated, but in need of heat at the same time.

It is a relentless pain. Sharp and then dull. It teases with previews of what is to come, then magnifies your pain to points you didn't know a person could tolerate until you had no other option.

I'm sure words can only do it so much justice.

We black out. We faint. We vomit. The room spins. For hours on end. For days in a row. And it leaves only to come back again. And we know it will be back again. Every time, we know.

And that's why endometriosis feels like hell. Sometimes, it feels like wasting life away. Sometimes it feels like failure. Like jealousy. Bitter, isolated, and misunderstood.

Sometimes the physical pain is the least painful part, actually.

For many women with endo, and in my particular case, daily life consists of a dull discomfort. Exhaustion, nausea, aching muscles, twinges of pain in the abdomen - like a dark reminder not to get too comfortable.

And for other women, there's none of this. Just because the pain isn't as regular or as severe as other girls may describe it, doesn't mean it isn't endo. It very well could be. It's really important to remember that everyone's symptoms are different.

And yeah, okay.
I guess maybe sometimes it does feel like cramps.
But we call those our "good days".  ;)

54 comments:

  1. I remember someone describing Crohn's pain as trying to digest a saw. Sounds like endo, sadly, is similar. I hope you're still doing well and off the pain meds!

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    1. Yikes, that sounds awful! But I'm sure that's an accurate way to describe it! Thinking of you! :)

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  2. Well this is just terrible! I know someone from my job who has endometriosis. And I hadn't heard of it before her, but it sounds terrible. I knew it was bad, but didn't realize how terrible the pain is! Thanks for describing how bad the pain is! You are a trooper!

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    1. Thank you for reading! I'm glad to put a little perspective on the pain your coworker may have been going through! I appreciate your willingness to learn about something new. :) Take care!

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  3. Stay strong Kelle! It's nice that girls with endo have you as a voice. I'm learning a lot about it myself.

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    1. Thank you for reading! I'm glad you are able to learn something new. :)

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  4. Nice I also share with you something hope this helpful for you cupuncture is a branch of traditional Chinese medicine that involves inserting fine needles at selected points on the skin to balance the body's energy (chi), thereby treating and preventing disease. It's used to treat a wide range of common ailments, relieve pain and promote general health. Acupuncture is thought to trigger the release of endorphins in the brain. These chemicals affect various body systems, reduce pain and make you feel good. Traditionally, it's believed that acupuncture removes blockages and promotes the flow of energy along the meridians, improving the functioning of the internal organs. Acupuncture has been shown to alleviate ailments including asthma, headaches, menstrual and digestive problems, high blood pressure and pain. It's also increasingly used in obstetrics and has been found to reduce morning sickness and ease labour. Check it out thanks.
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  5. I appreciate these posts, they make me feel like I can be a more understanding friend & human being to others in situations I cannot relate to. Great post!

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    1. Thanks so much for always reading them! It means the world when people who don't struggle from it are ready and willing to learn about it. Thank you again!

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  6. I've never even heard of Endometriosis! But now I'm def going to do some research just to educate myself.

    I know what awful, get-me-to-the-ER pain feels like though- so I'm SO sorry you have to go through this. <3 I have kidney stones, obviously not the same thing, but oh I know pain! Stay strong pretty lady! <3

    x Sara from tinysugarbee.blogspot.com

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    1. Oh no, kidney stones are definitely not fun! Hope you are feeling well too! Thank you for reading!

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  7. And here I thought regular cramps were bad! I'm so sorry you and many other girls with endometriosis have to endure that level of pain. Wishing you comfort, strength, and lots of happiness!

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    1. Thank you for the well wishes! And don't get me wrong, regular cramps totally suck, too! I completely sympathize with any form of womanly pain hahaha not fun, ever!

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  8. I thought this was a really great wat to discribe endo. When i was dignoised someone described it as labor pain. I say it's hurts worse than being hit by a car - and have recently switched it to "there is a car in my stomach". The only thing I would add is just because we experience pain that may be "worse" than cramps doesn't mean we don't understand what cramps are... in the sense that we don't lack empathy for women who have their period. Just don't try to compare the two because they aren't the same.

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    1. Exactly! I'm so glad you found it relatable! Thanks for sharing your thoughts, I completely agree!

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    2. I always described the feeling (before being diagnosed) like a knife continuous being stabbed into me. All of mydocs described me as wuss because of it! My ex complained that nothing hurts worse than being kicked in the balls. I joked (kinda) I would gladly trade that in for my nonstop pain.

      Cramps definitely are not fun, however- although some girls with Endo don't have consistently painful or long periods, serious period pain is not normal! I started when I was 12 and have debilitating periods. Its so important for women to not minimize or hyperbolize the pain. Young girls need to be taught the signs to help them!

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    3. Reading the comment your ex made reminded me of what my male GYN told me when I was first diagnosed. I was trying to figure out a way to explain what I was going through to my boyfriend of two years, and at the time we were only 19 years old. A lot for a guy that age to deal with. My doc ( who is a male ) said from what he has seen from women who have endo, the closest comparison for a guy is being repeatedly being kicked/kneed in the groin as hard as possible for days on end. He said he did not know how us women can deal with it....then added guys are wusses and would be in the ER non stop if they had to go through something like that.

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  9. I find it incredibly inspiring and brave that you speak out about this issue so candidly. You're truly bringing light to an illness that I had no idea existed. I think it takes a lot of strength to endure this kind of pain and still manage to smile and live your life the way that you do. I'm truly inspired. I had no idea the severity of endo so I thank you for explaining it in such detail. I want to walk through your brain one day and maybe pick up a piece of the strength that you have exuded throughout your Endo pieces as well as your life.

    And if I haven't said it before, I'm so sorry that you have to go through this but I applaud how you're not letting it define the kind of person you want to be in life. That's incredibly beautiful in my opinion.

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    1. Wow, you just made my day. Thank you so much for being so kind and thoughtful! I appreciate your sweet words more than you know. Thank you for your open-mindedness, willingness to learn, and generous compliments. You are wonderful. Thank you, thank you, a million times.

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  10. I read you often. I'm in the hospital as I type this waiting to be seen for endo pain. I'm sure ill get the normal test ultrasounds etc. Only to be told they can't find anything. We've been trying to get preggo for 4 years now. Miscarried last summer. Today wwas my give up day. I don't think I can take anymore. I am tired of this pain ruling my life. As you said reminding me to not get to comfy.

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  11. I read you often. I'm in the hospital as I type this waiting to be seen for endo pain. I'm sure ill get the normal test ultrasounds etc. Only to be told they can't find anything. We've been trying to get preggo for 4 years now. Miscarried last summer. Today wwas my give up day. I don't think I can take anymore. I am tired of this pain ruling my life. As you said reminding me to not get to comfy.

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  12. I'm really impressed that you have the bravery to come out and talk frankly about this. I also think that endometriosis is an oft misunderstood condition, so shedding some light onto it in an informal way is very valuable.
    It's really interesting how many patients I saw on my Obs & Gynae compared the flare-ups to childbirth - allegedly the most painful thing a human can go through!
    I guess I'm trying to say... hang in there!

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  13. I just came across this post and can say that I can relate to almost all of those descriptions. It is the worst pain that I have ever experienced. There have been many nights I've laid in bed knowing there is absolutely no way I will be able to sleep and I just think to myself when am I going to pass out because there is no way my body can possibly tolerate anymore pain. We have been trying to get pregnant for 2 1/2 years and I certainly hope someday I am able to compare it against labor! Thanks for the post! I think its great for people who don't suffer from it to get a glimpse into what we deal with and maybe help them understand why it takes over our daily lives so often!

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  14. I can totally relate to all of those explanations! I just had my third surgery to remove adhesions. I was first "officially" diagnosed at 19 although I had had symptoms since 16. I was fortunate enough to have a son before my endo got worse (unfortunately I was only 17). I'm now 24 and already know that I will need a hysterectomy when I turn 30 because of adhesions they can't touch without causing too much damage. my coworkers see me on my manageable days and say things like "how does it feel? . . . Oo , I have bad cramps with my periods, I must have endo too!" or "you look fine to me, it must not be that bad" I want to laugh at them but know the increased pressure of laughing will just hurt more.


    Thank you so much for posting this! I hope you have more "good days" than "bad" :-)

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  15. I wish I could post this at my work as my coworkers often say I'm being "a baby" "everyone gets cramps get over it". I feel so isolated with this.

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    1. You are not alone. It is difficult for those who have not experienced it to fully understand and comprehend. I like this feed, because it is a start to understanding. Just remember what a strong woman you are to deal with this and still do your best to have a normal life. God forbid, if any of the people who tell you to " get over it" ever have to deal with something so painful (physical and emotional). But if they do, I am sure that they will start to see you as not "a baby" but as SUPERWOMAN!

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  16. Thank you SO much for sharing this. I'm definitely going to share, if you don't mind. I also have a blog, called www.bravehealing24.blogspot.com
    Thank you for helping to get the word out there about what endo is really like. Big hugs to all my endo sisters out there <3

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  17. Thank you for this post, I'll definitely be sharing this with my friends and family who don't get it. There were even a few tears as I read through and remembered all the worst times I went through - especially pre-diagnosis when I would only get an hour of sleep a night curled up on the floor! I'm 4 months post-lap and (very luckily) pain-free at the moment through a combination of diet and mirena, but if ever I slip off the diet I get reminded all too quickly why I'm on it.

    I hope you find something that brings you relief like I did!

    Ami
    xx

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  18. Thank you! it is so good to know I'm not alone, and it is a great resource to share with the people in my life who have no way of knowing what I'm going through.

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  19. I was misdiagnoses with chronic appendicitis before I got my endo diagnosis. (Pre-lap.)

    The meditation I use to create temporary pain relief: I envision pulling the chef's knife out of my belly. Over and over again, because there's an infinite number of chef's knives in there.

    The description I use for men who don't get it: Imagine that a big guy named Guido kicks you in the balls. Then, a random amount of time later (could be a week, could be an hour, could be five minutes), Guido kicks you in the balls again. Guido follows you wherever you go. He never, ever tells you exactly when he's going to kick you again, but you know he's going to, and there's no way you can stop him. You can take painkillers or other drugs to diminish the pain, but Guido is ALWAYS there.

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  20. I live with a girl who has/is suffering with ENDO and I somewhat know what she goes through,countless trips to the ER and 5 surgeries over the past 3 1/2 yrs. As a guy, I know I will never have ENDO but, I also know what a woman goes through. THX for sharing that info, I will post it on my wall so other people can understand better what this is about.

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    1. Thank you for your willingness to learn and to help inform others!

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  21. Good work…unique site and interesting too for more details something like visit pain management doctors jacksonville fl get more informations.

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  22. God bless you hun and best of luck to all in our journey for a cure.

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  23. Hi! Fellow endo sister Angela showed this article on facebook, and I put it over on my endo website with direct link back to you. I also added you to my blog roll.
    http://www.livingwithendometriosis.org/2014/04/03/what-does-endometriosis-pain-feel-like/

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  24. Thank you for getting this out there... Currently going through a flare up, its back less than a year after my last extensive surgery to remove adhesions and dissect organs that had been tethered together... It currently feels like my leg may fall off and man I dread a cough or even a short walk to get a glass of water.... Not easy when you can't take pain pills that knock you out and you have to be alert to take care of your kids. Too bad most people are not understanding of the often debilitating pain. :(

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  25. Thank you for getting this out there... Currently going through a flare up, its back less than a year after my last extensive surgery to remove adhesions and dissect organs that had been tethered together... It currently feels like my leg may fall off and man I dread a cough or even a short walk to get a glass of water.... Not easy when you can't take pain pills that knock you out and you have to be alert to take care of your kids. Too bad most people are not understanding of the often debilitating pain. :(

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  26. I loved reading this because it is a hard feeling to describe. And all of the given examples are completely right but still not right on at the same time. I love the "scale" the doctors ask you what your pain is and its like it has it's own scale.. I was lucky to have my daughter veryyy young before the endo made my fertility essentially disappear and I agree that it is way worse then labor.. Its indescribable. But I love that so many people without the condition read this and commented because somedays it seems as if nobody understands or even cares. Thanks for helping spread the word :)

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    1. I actually made up a pain scale for my family and my boyfriend. I labeled each number with a descriptive ranking - "Still able to work but can't stand up straight, taking 5mgs of painkillers" etc. haha it's been surprisingly helpful but still somehow ends up being slightly inaccurate at times. There's just no real consistent way to gauge the pain, is there?

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  27. My daughter has endo she is 25 she is due an opp on the 2 of may to remove a cyst from one of her overies we will not know the outcome until they open her up. She has been in so much pain. We all hope she can still go on to have a child or children.

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  28. My daughter has endo she is 25 she is due an opp on the 2 of may to remove a cyst from one of her overies we will not know the outcome until they open her up. She has been in so much pain. We all hope she can still go on to have a child or children.

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  29. I was diagnosed 2 years after having my 2nd son. I had heard about it in the movies never in real life till then. I was one of the " lucky" ones. I never had menstrual cramps, I couldn't relate to my friends when they were doubled over in pain. The pain literally took my breath away. My c-section pain wasn't even that bad all the time.They said I had endo it as the very really stages so taking a birth control would help and slow down the process. So was put on nuvaring. I get laparoscopies doneevery 2 years or so. Unless I'm pregnant or breastfeeding cause then I'm not menstrating. I have maintained it well this is my 4 pregnancy due in September 2014. 3 boys hoping this is a girl. I am so glad my Dr caught it so early that I was able to have a handle on it the best I can. I know there are women that have it 100 times worse than ,my sister in law is one and I pray every day for her to have a lot more " good days".

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  30. I was diagnosed 2 years after having my 2nd son. I had heard about it in the movies never in real life till then. I was one of the " lucky" ones. I never had menstrual cramps, I couldn't relate to my friends when they were doubled over in pain. The pain literally took my breath away. My c-section pain wasn't even that bad all the time.They said I had endo it as the very really stages so taking a birth control would help and slow down the process. So was put on nuvaring. I get laparoscopies doneevery 2 years or so. Unless I'm pregnant or breastfeeding cause then I'm not menstrating. I have maintained it well this is my 4 pregnancy due in September 2014. 3 boys hoping this is a girl. I am so glad my Dr caught it so early that I was able to have a handle on it the best I can. I know there are women that have it 100 times worse than ,my sister in law is one and I pray every day for her to have a lot more " good days".

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  31. Endo pain is definitely hard to describe because it doesn't feel like any pain I have felt elsewhere ever before. I often describe the rectal pain that i get from my endo as if I am sitting on a sword. The pressure from the sword is constant, pushing up from my rectum through my vagina, into my lower left pelvic area and then back into my left lower back and rear left upper thigh. It is a searing pain, not hot temperature searing, but an electrical searing. That is how I described it when I was in the ER a few months ago; the nurse cringed and got the chills. I have also compared it to this: you know that horrible feeling one gets when they hear nails running down a chalkboard? That as pain is how endo feels.

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  32. Wow thank you for acurately bringing the physical symptoms to light,now some may understand how it also mentally fatigues us & lessens our expectations & quality of life as well.(and of those around us & love us unconditionally)this website is most appreciated!

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  33. Wow thank you for acurately bringing the physical symptoms to light,now some may understand how it also mentally fatigues us & lessens our expectations & quality of life as well.(and of those around us & love us unconditionally)this website is most appreciated!

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  34. If i go to the ER for endometriosis what will they do for me?

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    1. For me, they usually give me morphine and then do some tests - bloodwork, internal and external ultrasounds… Most times they are checking for appendicitis or ovarian cysts, but for the actual endo there isn't much they can do other than drug you up, unfortunately. But if the pain is bad enough, sometimes that's what you need!

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  35. Thank you for sharing your information with all of us, it was a vivid description. My daughter was recently diagnosed after 2 years of being misdiagnosed and it's extremely upsetting at how people accuse her of faking her illness. She is working with a Naturopathic Dr. and being treated with Chinese herbal medicine at this time. I truly hope that you are doing better and that somehow you are completely healed in the very near future.

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    1. People can be so cruel without even realizing it. I have found that naturopathic doctors seem much more genuinely concerned for and interested in their patients well being, than MDs who just throw pills at you after chatting with you for 30 seconds! Praying that the herbs and the naturopathic guidance will help your daughter! I know what a crucial role my mom plays in caring for me during my flare ups, so you must be a very strong person too! You will both be in my thoughts!

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  36. Thank you for shedding a light on what many of us go through. Even though difficult, I was blessed with 2 beautiful children. I have had endometriosis for 21 years. I had a flare up yesterday and it was the worse that I have ever experienced. I know my family doesn't understand what I go through. It's sad, but they think I exaggerate my period cramps. I sent this article to my husband and teenage daughter so they can hear from someone else with the same problem. Thank you again!

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  37. Thank you for writing this! I was just diagnosed with endometriosis last month after having a sudden onset of symptoms in April that had previously remained dormant for 8 years. Unfortunately, I am having a flare up; first one since the laparoscopy. My husband is beside himself trying to understand what I'm feeling so he knows how to help me. I directed him here to read this because you so wonderfully put into words what a flare up is like. He became emotional as he read and everything started to click in his mind. Thank you again, and I'll keep you in my prayers!

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  38. Hi my name is crystal chorney, I have pelvic congestion syndrome and endometriosis, it feels like a school bus is running over me most days, it scares me that there isn't a cure. But I am blessed with my 5 year old and a understanding family, (most days)

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