As a healthcare practitioner who has devoted my life to helping diagnose and treat women with endometriosis and pelvic pain, I see the real-life pain and suffering caused by this disease. The magnitude of the pain and suffering and the ensuing impact on quality of life can be almost incomprehensible.
The first worldwide study on the societal impact of endometriosis was presented recently at the 26th annual meeting of the European Society of Human Reproduction and Embryology. This study found a significant loss of productivity of over 11 hours per woman per week. It is estimated that 176 million women around the world have endometriosis. The study recruited 1418 women from 10 countries. Significant findings included an average delay in diagnosis of 7 years; the severity (stage) of endometriosis did not correlate with the severity of symptoms; as symptoms became more severe the women’s quality of life was reduced; pain was the leading factor in the 38% greater loss of work productivity of women with endometriosis compared to women without endometriosis; and non-work related activities were also significantly impaired by the painful symptoms of endometriosis.
This comprehensive study highlights the magnitude of the number of women affected with pelvic pain and endometriosis, the severity of personal suffering and its significant societal impact. There is a real need for an increased awareness of endometriosis and pelvic pain. Large numbers of women are suffering from this devastating disease, and they need and deserve effective health care and treatment.
For more information, visit the World Endometriosis Research Foundation website.
Hello everyone. I was so taken back when i actualy read what was on this website. For once since ive been diagnosed with endometreosis, there is other people out there with what i have to deal with. Long story short i was 17 when i had my first son. After i had him over a period of a year, i had developed endometreosis. It took them almost 10 months to figure out what my pain is, after countless trips to the ER i became heavily addicted to pain meds. because no one could tell me anything!!! I feel better like i almost have hope that i can get somewhere other thank hooked on something with this horrible disease, that no one knows anything about.
My name is Samantha I’m 27; I have endometriosis. I have had it for 5 years. A lot of people don’t understand what it’s like to live with it. The fear, the pain, the sadness. Thank you for letting the world know
I went through the same thing..omg until the last time, I was rushed into sugery. its scary very scary..
My Name is Lauren. I am 21, and was diagnosed with endometreosis when i was 18. I had had horrbile cramps every since i started my period at around the age of 15, and every Dr. I went to just kept saying i had bad periods, but i knew it had to be more, finally after searching for Dr.’s for years, I found a Dr. that diagnosed me. I have had numerous surgeries and over a 100 ER visits. Even after all my surgeries i still hurt so bad. This pain is so hard so describe because it hurts so bad. It’s hard for people to understand how much pain endometriosis can actually cause. It makes me depressed and interfers with my college, and work life. I wish there were a cure for it! I am so happy i found this blog!–people need to understand that this disease is more than “bad” cramps, and hopefully other women will learn from this blog!
I was diganosed only 3 years ago with endometrosis, I am 27, and have had severe pelvic pain since I was in the 7th grade or so when I first started my periods. I remember being held out of class to “rest” cause the pain was so bad. Finally 8 years ago I found a doc that after years of understanding but frustrating trial and errors, we did 3 surgeries and finally have gotten pregnant after being told it wont happen. Since having my son 6 months ago, the pain is worse then before. I have spend countless days in the ER for exchruating pain, just to be able to meds to get the pain back under control. I have to take percocet on a regular basis since that is the only thing that helps. I have been put on final notice for work due to attendance, if I have to call in one more time I loose my job. So I have to fight through the pain on a daily basis despite hardly being able to stand up straight. None of my manager understand they tell me to take a short term disability and rest so i will be better. they don’t get that it’s not like that. It’s been very frustrating.
It’s such a relief to read this. I get lectured on my attendance often. When I explain to my boss that the sickness comes with my period, she just looked at me and said, “No one misses that much work because of their period.”
This said to me AFTER I had surgery for my endometriosis. That really hurt me because my boss and I are friends. I come in to work even though I have a hard time even sitting up. The pain is so awful. I’m either nauseas, constipated, or have diarrhea. I just want to cry all the time. I miss so much in my life because of my endo.
I wish people would open their eyes and understand how much some of us suffer. We’re not “Faking it” and we’re not “making it up”.
I am so happy that someone is shedding light on this topics. I have to miss one to three days of work each month because of pain. My boss just doesn’t understand. He even insinuated I’m just not trying to get better. I feel I am doing everything I can to find an effective treatment for my endo, but some days, the pain is just too much and I cannot get out of bed or walk. I’m a manager for Target, and I am on my feet 10 hours a day (10 hour shifts, sometimes I get to sit briefly). This disease is hard on my body, not only the pain but the fatigue as well. We definitely need more awareness around the topic.
I too am happy to read that there are others who feel the same way. my nightmare keeps getting worse.Diagnosed at 36,done having children,had an ovarian cancer scare and while in a catholic hospital gyne refused to do total hysterectomy because I was still of”childbearing age” anyway diagnosed with “severe endometriosis” told to take advil, bad reaction to one lupron shot and told to go to a psychiatrist.Now at 38 uninsured working trying to work full time had laparoscpy after admitted for uncontrolled pain, endometriosis is everywhere wraped around colon,ureters small intestines, as well as a mass where fallopian tube and ovary should be “spaghetti strapped around my uterus”treatment plan- take 2 aleve 2 es tylenol and try to get blood levels stabalized in next two months for total hysterectomy because also severly anemic. Pain is constant 6/10. It sure feels like no one understands or cares.
We need more educated compassionate doctors to help us through this. After the last ten years of going to the doctor complaining of abdominal and lower back pain I finally have them suspecting endo. 6 yrs ago my tube ruptured from eptopic pregnancy. The doctor told me I was a mess inside and would need reconstructive surgery if I ever wanted children. Had a heck of a time since then trying to get another doctor to look inside. After too many closed doors I gave up. The symptoms became disabling but I was working from home so being a hermit was just something I accepted. I upon my own research reached the conclusion that I probably had endo. Now I have been laid off and lost my med insurance and am tired of being on my couch unable to function. Been to several doctors over the last year- and they can’t run the diagnostic tests with my non insured self, so I’m left completely defeated. I can’t work, I’m missing weddings, and live my life around the pain which is almost 24/7 at this point. The doctors send me home telling me to get insurance, but I get turned away for preexisting conditions even though I have never had the endo diagnosed. Only people that understand are those that have lived through this nightmare. We need more awareness and attention for this disease
After being diagnosed in October of 2008 at the age of 27, I had my 1st laproscopy the following January. After trying various other treatments (lupron shots, etc) I had to have a partial hysterectomy in Sept of 09. The pain returned just a few months later. In June of last yr I had my remaining ovary removed along with my appendix. As of 3 months ago the excruciating pain returned. Doctors don’t know what to do with me. My GYN doesn’t want to do another surgeries. My GI thinks it’s just my IBS (which a completely different kind of pain). I feel like people are think I’m faking my pain to get attention. It’s so nice to read these stories and realize I am not alone! Fortunately, I have a somewhat understanding boss, but I still come into work when I’m doubled over in pain. If I only went when I wasn’t hurting, I’d never be there.
It feels good to read others understand the feeling. I miss work and get the third degree as if i’m fabricating the severity of pain.
Its funny, I’m sitting at work with tears in my eyes and the pelvic pressure is so bad when i bend down i get nauseous. Because I’m 23 most of my co workers think I’m making all of this up. My boss told me not to come “looking sick” but we only get 4 days a year, my FMLA has been used up during the first surgery and I’m stuck.
I totally understand this. I was diagnosed at age 21 through a lap after years of being told I just had bad periods, but I always knew that there was more to it. I missed so many days of school that my mom would have to fill out forms that said I was on vacation so I could have enough off days to make it through periods. No one would put me on birth control because I was “so young” so it wasn’t until college that I was put on birth control and I finally had some relief but the pain came back more intense than ever. It wasn’t until I passed out at work from the severe pain that my doctor finally took me seriously enough to do a lap and sure enough I wasn’t just a “whiner”, I had endometriosis. After my surgery I was pain free for 8 months and it was amazing. After college though the pain came back during my full time job… I missed so many days and my boss was understanding, but I lived in constant stress and fear of being fired for something I couldn’t control. I was terrified to be caught in public with a bad episode. Eventually I knew my boss was ready to fire me, so my career path changed and I became a substitute teacher so I could control my own schedule. I essentially became a hermit, terrified to leave the house. No pain meds were ever offered to me… motrin did nothing and I was only told to do that. Luckily I’ve been able to change my life completely and I now make my living with my own business that I work from home to do. It is a huge relief, but I went to college for something completely different and here I am… changing my whole career plans in order to deal with endometriosis pain. I feel defeated sometimes, but I also know I’m lucky that I’ve been able to push through this and figure something out for myself so I don’t go broke.