I’m lying on an emergency room bed, writhing in agony, screaming in pain, as though my insides are being torn to shreds. I curl up my body, protecting myself from the evil inner force that resides within me, stabbing me, shocking my organs. My mind is frantic, confused, and manic. Lights and sounds mix together around me and I close my eyes to minimize the sensory overload. The white sheets under me feel scratchy and irksome, I can’t deal with any added discomfort. Searing pain bubbles within me, threatening to boil over, and when it does, I let out a scream from the very depths of my soul.
I hear a voice and attempt agonizingly to open my eyes. A woman in a white coat stands in front of me, arms crossed in a stance that conveys a mixture of disdain and apathy.
“Rachel,” she demands, her voice both indifferent and annoyed, “want to tell me why you’re here?”
Is she joking? I wonder to myself while trying to gather my coherent thoughts, does she not see I’m in excruciating pain?
“Pain…” I manage to say, the word more a miserable moan than an answer. “I need meds…”
“I’ll decide what you need,” she replies nastily. “You’ve been here way too many times, asking for medicine each time. You don’t need meds, Rachel, you need to go to rehab. You’re an addict.”
I can’t control my tears any longer and I let them flow freely as I sob uncontrollably. Didn’t she see my chart? Doesn’t she see that I have endometriosis? Does she know how painful it is?
“I have endometriosis,” I muster, “I take normal pain meds every day but they are not working today. The pain is worse than usual!”
And then my senses can’t take the pain any longer, and I scream out desperately once more. All thoughts abscond from my brain, all I can think of is dying to get rid of the pain. The doctor looks at me like I am a dirty piece of clothing on the floor. She purses her lips and then spits out, “I suppose I can give you some Motrin or Tylenol.”
I am so desperate at this point I agree to her pointless suggestion. My head knows the meds will not help, but my body is starving for relief. Needless to say, thirty minutes later the Motrin has left me right where I was before I took it: in paralyzing pain.
A nurse comes into my cubicle a throws a glance at my miserable form. “You’re being discharged!” she sings, as though she is freeing me from jail. Her smile is grotesquely wide as she hands me a pen to sign my name on the discharge papers. I want to explode at her, to hurl words in her face that describe my agony, and wipe that inane grin right off her face. But I don’t. Instead, I meekly take the pen, wait for a moment in which my body is able to stop shaking, and then sign the papers.
“Wheelchair will be here in a minute!” she croons, then leaves me alone with my emotions.
I fold my beaten-up body into the wheelchair feeling completely empty and numb despite the pain. I am so shocked at the experience I just had. I left my heart, soul, and voice in that emergency room, trying my hardest to explain the agony I was in. I laid in front of a doctor trembling with pain, and she in turn called me an addict and sent me away. She didn’t bother to understand what I was going through and didn’t test me to see what drugs I had in my body. Instead, she took my trust, ruthlessly pummeled it, and carelessly threw it away. I leave feeling nothing more than a desire to give up and let it all go. Tonight, I have become one more casualty in the fight for us with endometriosis to be heard.
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This article was posted originally in February 2014.
I have been dragged across the emergency floor screaming and crying in agonizing pain. I have been handed pamphlets on drug abuse because I begged for the only drug that worked. 1 mg of dilaudid. I have been kicked out of the ER after being screamed at as a “disruption”because of my crying and moaning. I have just been diagnosed with endometriosis. I cannot believe how far back Women’s rights are in medicine…
OMG, I feel so bad that Doctors treat people with such a like of compassion. I’m not sure if I have endo, but I have strange cycles, a large ovarian cyst and what I’ve been told is IBS. Living in a small Canadian town, I’ve hit a wall with my pain and am waiting to see a gynaecologist. I’ve had 4 ER visits in the last month each time being sent home and feeling like I’m crazy because the Dr’s feel a cyst shouldn’t hurt.
Also, does any get dizzy, nauseous /flu like symtoms while standing/trying to perform everyday duties? And does anyone else have strong pressure in lower pelvis,vaginal,rectum area like beginning stages of child birth? Any answers would be greatly appreciated! As my drs look at me like “no other person in the world has those symptoms, I’ve never heard anyone experiencing that!!”
I experience exactly the same. Came here looking for similar experiences!
Yes I feel your pain I’ve been having this happen to me on and off for the past 6 months. I never und understood what it could be. I’ve been to the Urgent Care and then they told me I had colitis and gave me a muscle relaxer, so I just went about my way. Now this last time it’s gotten way worse. I just went back to urgent care with horrible lower back pain, I had no energy I could barely stand. I fell asleep in the waiting room. So they tested my urine results nornal. Then she comes back says I pulled a muscle in my back, I said so every month for 2weeks I pulled a muscle in my back. Whatever, she gave me again muscle relaxer like whatever I’m done I just wanna go home and lay down. I work a very hard job I drive a fork lift, at Amazon I count inventory all day and lift heavy boxes, I’m about to lose my job because I’ve missed so much work like atleast one week a month. I’m debating today to go to the ER. I woke up last night with a migraine from HELL. My poor boyfriend doesn’t know what to do. I know the ER won’t help but I’m thinking maybe it will get me a faster appointment into a gynocologist. As of right now I don’t have one, I’m looking for a new one everyone I call says 3 months or longer for new patients.
Yes the pain is real, even after my surgery I thought the bleeding was a blessing to stop. Few years later I’m hit with a horrible pain that made me feel that I was giving birth, it hurt so bad I wasn’t able to walk, my facing was going pale. Walking made me dizzy and my vision starts getting blurry. That was the worst pain I’ve ever felt. I wasn’t able to drive no more at the time because I felt I was going to give birth driving my car.
Other incident, the pain was not as bad as the first time, but this time walking felt painful. Picture yourself walking after giving birth, you know how difficult that was already, every step you take you can feel the pain from your abdomen and the after math stitches. My pain for some reason is always on my left side, I would describe the pain as big or bigger than my whole hand stretching out. I don’t even want to move and rest in bed all day.
I’m 51 and for the first time since my early twenties I’m in good health. Endometriosis is torture. There is no other way to discribe it. The physical pain alone is torture but it doesn’t stop there… It had a negative effect on every aspect of my life: relationships, employment, health care are just a few. It effected my self esteem in deeply negative ways. It robbed me of the power to control myself and my life. Endometriosis is torture. But now it’s over. I only have so many inches left on my ruler of life and I’m going to live them to the fullest. To everyone who suffers this torture please know that my loving good thoughts are with you and one day you will be free too.
I’m 20. I’ve been in pain for 9 years. Gotten surgery twice. I need advice
I have been in excruciating pain for so many years. It started when I had my first period at 9 years old. Along with dealing with the pain, I also had to endure the torment at school and ridicule from all the other girls that didn’t understand, as I used the bathroom to much (changing pads) and spending way to much time at home (being sick at home for 5+ days during period time) I was seen as an outcast, no one wanted to be my friend or stick up for me. In fact my grade 5 teacher used to call me stupid among other names and refuse to show me what i missed during my time off and then tested me on it (obviously i failed those sections). My Mother would never believe me that a teacher would say such horrible things to a child..of course this teacher abuse issue wasn’t dealt with until year end when she couldn’t take my daily tears upon coming home. So at this point all I can do is just muddle through life with no friends because no one understood that my insides felt like they were being pulled out through my belly button. High School I was able to make a couple of bus friends…others waiting for the city bus. My mother was not my friend, was overbearing, over protective and never listening to how I felt. It wasn’t until high school when I saw a DR office open up in the plaza beside us – i begged and cried for help without my mother knowing…so this one lady took pity on me and began trying to help me find out what was wrong. It was at 13/14 years old that I started taking birth control pills which i was on for 10+ years among strong pain killers…finally I made it to university but no family doctor up there so I was in and out of emergency clinics and emergency rooms at the hospital. Finally after I left university and found refuge living with my Aunt..oh my aunt ..what a great woman…i love her so much she is like my mother. She took me at 20 years old after listening to everything and seeing my pain, to a gynaecologist and we decided to do my first laparoscopy – and she found ENDO…yay 🙁 so she lasered what she could see off and sewed me back up leaving me still with birth control pills and strong pain medication of perokocet. I had about 6 months of every day pain relief but it was starting to come back and then my periods were getting worse so my second surgery happened 1.5 years after my first one. This time she sent me down to Toronto East General Hospital to see her collogue who has more cases of this than her..so he does the surgery + more meds then a 3rd surgery..at this point he has no idea what to do beacuse my pain is so bad i am going to need a 4th surgery so he sends to Sunnybrook Hospital to see more of a specialist in this field…she just has more cases than him but wasn’t really a specialist but she did the surgery anyways. in between all of these surgeries I had tried, depo provera shot, lupron shot, visanne pills among other meds.. I am now 30 years old turning 31 and am not able to work any more because my pain was so bad I couldn’t make it too work (having to pull over and call ambulances multiples times) so my GP said to stay home and not work. I now am training my own service dog his name is Jasper (Chocolate labrador) he helps me every day to get my medicine bag where ever it is in the house, water from the fridge. He also helps me turn off or on the lights, pushes open doors and is learning to go get help for me if i was out of the house and fell into a pain bubble as i call it among a ton of other things.
Everytime we Endo Girls see the Doctors, everytime we get too sick and have too much pain have need to go to the Emergency room we are abused. we are abused mentally most of all but physically aswell because we are in pain they want to push on it, which leaves us in even more pain. They tell us we are drug addicts, they are rude to us and refuse to understand or listen. All i can say is once you are undercontrol nicely expralin to the doctors you have endometriosis and that you cannot see it on imaging devices as xray and ultrasound. Explain to them because they are uneducated…you are helping the next woman behind you. I do my best every time to explain if they are willing to listen but if you have a bad experience, each and every time i encourage you to call the hospital and complain..after you have complained several times you should notice them dealing with you differently..but you have to do your part. It is totally unfair and sucks but stand up for yourself – when the pain has subsided.
I advise you to do the best you can if you need the emergency room. Get a medical bracelet made up with your information on it. this is what mine says (below) this helps to show them that it is more serious condition..check with your doctor.
Front:
Name
Medical symbol
I have Endometriosis
I.C.E Name and number (ICE – In Case of Emergency)
Back:
Severe nerve, back & abdominal pain
Allergic To: _____
Medical Assist. Service Dog – do not separate from Jennifer
Jasper
I am not very techy but It would be wonderful to set up some kind of instant messaging / bloging / emailing back and forth on a website so when we are sad we can make friends with another Endo woman and we can try to support each other as we know what the other is going through. I would love to make new friends 🙂
On a positive note I do not like being unemployed so I have started my own business because I am amazing with animals. I do In Home Vacation Sitting while people are on …vacation! 🙂 their pets get to stay home with their regular schedule and not in a kennel + they get to be around my dog Jasper so they get free training at the same time!! YAY http://www.pawsitiveprinciples.webs.com – everyone has a talent somewhere so make sure you use it!!! You can do it! I know you can. To whomever is reading this I love you and send computer hugs!
Hi Jennifer,
I am a Canadian woman with endo–we have a wonderful support page on Facebook at https://www.facebook.com/groups/TheEndoNetwork/. We have about 1200 women across Canada with endo in the group. We also have an in person support group on Toronto on the second Thursday of every month (next meeting, Thursday March 10, from 7-9 pm at 720 Bathurst St) if you would like to meet some individuals with endo in person.
It’s lovely that you have a service dog to help you!
Best,
Philippa
ER too many tines to count, yes we’re looked at as drug addicts with no apparent cause for this pain! After 6 yrs of enduring this pain(JUST as u described, your insides being ripped out through belly button!) I was FINALLY diagnosed. Not eating many days because I just couldn’t (or couldn’t hold it down), severe weight loss, and constant nausea. With a fire in my belly I begged for help! Not ONE Dr had considered my low pelvic pain endometriosis? Dismissed as complications due to my Celiac, IBS, constipation, colon cancer at one point, or we’ll continue to monitor you for appendicitis. WTF?! I’m so saddened yet glad to read these stories and not feel so alone. Will surgery finally end the pain? It appears from these stories, no. I wish the best of luck to all that suffer!!
After years of dealing with terrible periods, I noticed my first real endo pain at 18 years old. I was told it was cramps and to take ibuprofen by every person around me. A year later, the pain has become absolutely immobilizing. I physically can hardly get out of bed. I’ve done ultrasounds, I’ve done birth control, I’ve done the pain meds, but none of my doctors are trying to do the surgery. They keep telling me they’re going to look for something else. I’ve spent so much money and time complaining to numerous doctors, but they all seem to think I’m crazy. I know I’m still young and I see that you dealt with the pain for over ten years, I just don’t feel like I could handle that. I’m going on a year with all the symptoms but I don’t think I can handle this debilitating pain for much longer.
Reading all your stories makes me so D### angry. I’d get…” all your tests are normally, you sure there isn’t something going on at home my hubby used to sit there with me but he got tired of hearing” here is your discharge papers, all tests were completely normal I’d yell..”.is 190/170 normal is heart rate 190 (or more) NORMAL???”I think you’re in here to get high” I’d say…whatever u send me home with (probably 5/500, take 1 every 6 hours) I have something way stronger in my purse.Kerp your d $$$ crappy vico dint hey don’t touch my pain.Ig get scripts tossed back at me, dirty looks, called an addict to a new Dr I had because I , of course got sent home with 5/500 & I was used to taking 2 of the 10-325 Norco (same thing but diff names and mine was stronger. I’ve gotten kicked out of an ER bed.i said no..do not take out this IV until I see Dr again. They called security. I ripped my iv out and of course blood was ummm..pouring out.My OBGYN told me to go there& have him paged.I was freaking LIVID. Next day I had to go again. Had fever 14th . wouldn’t break. Bleeding, vomiting, it was horrible. I was admitted to SAME hospital for a week.Too much blood loss&some blood tests were way too low.It was only 4 days post op. I believe I’ve had this since 13…when I started. I’m SICK of schooling Drs.They think we’re dumb because we’re just “no body” to thrm.I also got sat down by my mom, hubby, my oldest daughter who was 18 then and 2 sisters. Saying drug rehab or hubby takes kids out of state now and you’ll be lucky if u see them before they are grown (they are 5& 6) I Had a surgery by an expert in months from then.Drug counselor said. .that’s what drug addicts say when I said” There is a HUGE difference between addict and dependant” I told them I’d go home and my suicide note would be all about my mom and husband. And my kids are my reason for breathing. My air I breathe.id blame them. She said they are from different drs. I said no s###. BUT look at the address. (same place) I took 4 a day. My mom cried and said ” have u watched intervention” yes” but mom I don’t take 25 at a time. I take 1 or 2. All my stuff was packed. Mom spread horrible lies to him (I was a prostitute, I f-ed for food..OMG….ARE U SERIOUS. Well my expert in Denton went OFF on my husband. If I had cancer (which I may..bladder) it’d be OK because they know more about it. I asked where she read about it. Get this…..WIKIPEDIA. HAHAHA. OK….
Hi…I’m so just at how you were treated by the doctors and your family members.I have endo for twenty years and many operations in on tramacet daily..visanne tablets…morphine at times. ..antidepressants and anxiety meds.this disease have ruined my life.i lray that you fknd peacr and understanding from kthers but if you ever need a friend i am here.my name is Roxanne and I can relate to it all.take care fellow sufferer. Almost no one understands us 🙁
I had endo my whole life and ended with a complete hystorectomy at the age of 46 since my mother died from ovarian cancer at the age of 53..my question is about my daughter in law who has had endo and finally got pregnant at the age of 32 with my wonderful 8 year old grand daughter..but she was on methadone and has been on it the entire 9 years since even having no periods..is she addicted…one side effect of methadone is no periods, bad teeth..she had to have them all out at 40..she then started drinking and wrecked their car and that has caused thousands of dollars and she claims that she had to get off methadone slowly or she would die..they had to drive 100 miles round trip once a week to get the meds..she acts totally weird the first couple days and is in bed the rest of the week til she gets her next fix??
I’ve had nasty ER visits too. I had adhesions suffocate my appendix – when it first started, my doctor told me to go to the ER the next time I got a fever and pain spike so they could do tests to determine what was wrong. So, I did as my doctor asked – couldn’t walk the day I went in, the nurse acted like getting me a wheelchair was too much hassle, then she took me to a room covered in blood so I “could see what a real emergency looked like.” My husband called and got me in with Dr. Sinervo after that – he was the one who discovered that my appendix was dead.
My neurologist tells me to go to the ER with my migraine pain too, especially when I’m vomiting, so I can be rehydrated. I laughed when he said that – the ER doesn’t handle stuff like that well and I wish doctors would realize that.
I am going to take a photo of my insides & imprint it on a T-shirt.
It will say
“This Disease Grows inside of me, even if you don’t See it.”
People don’t believe what they can’t see.
No one better treat me like that because I won’t put up with it.
So sorry this happened to you, but I’m not surprised.
I was treated horribly in the ER by a nurse who was a ball of sunshine when I’d sprained my shoulder another time. She forced me to do a “vaginal culture” which involved scraping my insides until I cried…all while yelling at me to “be still!” At least I got some codeine out of it, but her attitude made it clear she thought I was faking.
So-called medical “professionals” need to get some empathy. It’s important to rule out drug seekers, but not at the expense of those in legitimate pain. Better to give drugs to one junkie than to let one patient suffer in agony.
I think we should organize a campaign where us, as patients, on the days we are not in excruciating pain, should go to the same ERs with printed information to pass on to all ER personnel, explaining what Endometriosis is, what Endometriosis is not, simple facts like:
1-There’s no cure for Endometriosis,
2-The only treatment is excision surgery and pain management,
3-The number of suicides due to Endometriosis Pain and Misunderstanding,
4-A list of symptoms,
5-Clarification that Pregnancy, Hysterectomy and or Menopause does not cure Endometriosis,
Etc.
I would even include the side effects of drugs used to treat Endometriosis such as Lupron, which can also bring an otherwise “healthy” patient to the ER.
Also we may include some horror stories of Endo patients mistreated, bullied and dismissed at ERs because of misinformed Nurses and Doctors.
May be we could get virtually together to develop such printed material for accuracy and to keep it consistent.
We may include quotes from renowned excision surgeons and the different Endometriosis Foundations for additional information.
I bet we can make it happen if we get organized!
Please email me if you are interested in being part of this project.
Big yellow hug to all my EndoSisters!
I know how you feel I am 22 years old an been turned away the same way from an emergency Room it makes me sick they wonder why I refuse to see doctors anymore . I’m on pain pills every day refuse to take them due to being labeled a drug addict.
I’m do sorry you were treated like a drug addict at the ER!!! That’s disgusting. I’m in so much pain right now and I’m thinking about whether I should go to the ER. I think I would want to lunch that nurse for treating me that way. There is so much ineptness with nurses and doctors it’s hard to believe in any of them!
You are not alone! I’m 22, I was diagnosed with Crohn’s disease a little over a year ago, and have a diagnostic laparoscopy coming up for likely endometriosis. I have frequent cysts and bursts already. In the past year and a half I’ve been to the hospital so many times because of excruciating pain. I’ve been called a liar and an addict before. I don’t understand how you can be trained in medicine and not understand that chronic pain isn’t something that gets better. Or even that you can get used to. Most doctors are lucky enough to not have experienced the things they treat. But it makes it harder for them to understand. The worst part is that I don’t need to feel ashamed of myself when asking for help in addition to hurting.
Siobhan S- I’m so sorry to hear that you are struggling! As I’m sure you’ve seen from my writings, I, too suffered horrifically for a VERY long time. Then about year and a half ago I found a facebook support group for endo called Nancy’s Nook. Nancy is a retired nurse who suffered with endo for many, many years. She worked very closely with Dr Redwine–one of the leading specialists on endometriosis. Nancy knows everything there is to know about endo and aside from getting good support in her group, you will get an enormous amount of info on endo. It was there that I learned that most of the info out in the world about endo is completely wrong, and most doctors, even gyn’s know basically nothing about the realities of endo. It was also there that I learned about endo “specialists”– a handful of surgeons around the US who basically devote their lives to learning about endo and changing women’s lives by doing excision surgery on their endo– the ONLY way to remove endo successfully. The most important thing that I learned there was this: Most doctors are unable to recognize all of the ways endo can look and almost always, unless they are one of the specialists (found in a list on Nancy’s Nook) chances are that they did not remove all of your endo and that it why you are still in pain. Until 6 weeks ago, I had had 4 excision surgeries (including a hysterectomy because my gyn told me that a hysterectomy would cure endo–TOTALLY NOT TRUE)and none of them helped my pain. After finding Nancy’s Nook I found the CEC- Center for Endometriosis Care in Atlanta, GA and 5 weeks ago Dr. Sinvervo from the CEC performed my surgery. Honey, for the first time in at least 10 years, I am pelvic pain free! All thanks to Nancy’s Nook and the CEC! I tell you this very long reply to encourage you to join Nancy’s Nook, learn about the specialists, and regain your life back!! You CAN get lifelong pain relief if you do it!!! Good luck honey!!
Thanks for posts ladies. I am a long time endo sufferer and after 2 surgerys later it has returned with vengeance. Thankfully my doctor’s are very nice and supportive.i have become acustomed to the horrific pain I feel daily feeling I cannot go another day fighting this. What I find so difficult is the emotional pain. I hate myself more with every pain that comes. I cannot look at myself in the mirror some days because of the loathing that comes from feeling (less than) a woman. My partner is amazing and tells me I am beautiful everyday. Im fighting this as hard as I can but I just don’t think I can take anymore. .does anyone else feel like this?
I was blessed enough to be diagnosed with Endo at age 18, but my unbearable periods started at age 10, I had a great understanding Dr then, until I didn’t when I no longer had insurance, then started the ER visits because I couldn’t afford a doctor. Then, the ER docs stopped helping me, I turned to heroin.. It took away the pain, instantly, and after months of use, my cycles stopped, I felt no physical pain, just paralyzing anxiety and guilt… So, I turned to methadone and stopped the street drugs.. Again virtually pain free for about 3 years… Then I had a baby girl, dependent on methadone and cps said I couldn’t have my baby unless I stopped methadone and went to rehab, and so i did… It wasn’t long before I was in agony, the counselor at rehab took me to the ER and. Picked me up, she knew I was given narcotics and didn’t even lecture me, she could see the pain dripping off of me… The nurse at rehab said I couldn’t have my prescription of Norco even for 2 days, through the worst of it, she told me to do SIT-UPS!!! She said she had Endo too and sit UPS worked just fine for her. So I did go to rehab and I am vigilant to not drink alcohol or take mind altering substances, but there are times, tgd pain is soooo bad that narcotics are the only thing that can bring relief. I’m starting to be in pain every day… My husband says “here we go…” whenever I advise him I may need to visit the ER, makes me feel so awful… I’m rambling, but basically rehab was good for me, but now that I’m no longer on methadone… I’m physically in so much pain so often….
This just happened to me. I fell down – I’m three weeks post excision lap – and the pain was really bad. Screaming bad. I go to the ER, get some Aleeve and a scolding. Thanks, being treated like a child always helps my pain!
My name is Amy and I have suffered from Endo for years now although it was only diagnosed by accident while removing a cyst. I can remember feeling overjoyed that there was finally an answer to my pain. I had been to see many doctors in the previous years and after about 4 years I was beginning to think I was crazy. I have had countless trips to the ER and after awhile I felt like everyone knew me there and was always embarrassed to go but there were times the pain was so bad I couldn’t take it. I unfortunately know exactly what you mean when they treat you like a drug addict.I have had a hysterectomy and 3 other surgeries in the past year. I am at the point where I don’t want to get up in the morning I just want it all to go away. I hope you know you are not alone in this awful battle. I sincerely hope you are doing better!
Thank you so much Ruthie! The same to you!!
Thanks for sharing your story and your pain. It is important for people to realize the tremendous impact of such diseases…. Wishing you strength and comfort… 🙂
Rosemary, I am sorry to hear that you have been in the same situation! I agree this needs to be stopped–the question is HOW???
This is an outrage and all too often the norm! I am so sorry to hear you suffering and I have felt that pain all too often. I have given up on the ER as they don’t understand and you leave feeling worse then when you started. It is bad enough to be stabbed by the relentless pain but to then be dismissed with no relief is unthinkable. I have hear the same accusations and then been told I need rehab. It has to STOP!!!