The Experience of Endometriosis

Note: if there are terms you are not familiar with, see the Glossary on this site.

Telling our stories helps end stigma and ignorance. Please share your story with others with endo, family, and doctors during Endo Awareness Month. Here’s a small sample from our inbox—

ENDO=PAIN

“The pain is unpredictable, and it took me years to realize that some of the sudden pains I experienced are linked to endometriosis. As much as the pain can be sudden, it also can be strong and sharp to the point that I am unable to walk or breathe. I would also like to say that the endo pain is very different from all other types of pain. It feels very ‘organic’ and is the strongest pain I have ever experienced. It is also much more distressing and depressing than any other pain as it feels deeper inside. And you never know when it will end or what intensity it will reach.” —Aude, UK

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“Doctors need to know that simply changing birth control pills and pain relievers is not enough. Patients feel like doctors are not taking the time to actually listen to them and seek a permanent solution. I personally feel that my doctor is just simply telling me what he needs to in order to get me to leave or satisfy me for the moment. Since being diagnosed with endo, I have been on countless birth control pills and several pain killers. Nothing has helped! I had laparoscopic surgery and started to have symptoms of pelvic and back pain, migraines, and general misery within six months after surgery.
I have seen several doctors and been sent through the same run-around every time with six or seven different hormones, all of which have terrible side effects. I feel like my life is no longer my own. Doctors need to know that this is the most frustrating, infuriating, and saddening disease because there is no hope that anything will relieve the pain and ongoing drama. I have yet to have children and fear I will be unable to do so. This is so serious, and I feel that it’s something that most doctors brush off.” —Alethe, CA

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“Women and girls should not have to live with pain for years like I have. I have been through countless procedures and medications to control it. I have had a baby and the pain came back stronger than before having a baby. I finally want someone to listen to me and not try to put me on more drugs.” —Amy, MI

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“The pain is crippling; it can make you faint. It makes you nauseous and very weak. You can’t walk or do anything.”
—Sharda, France

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“I would like doctors to know that the horrible pain continues AFTER total hysterectomies; at least mine has continued. My pain is just exhausting. I am currently under the care of a pain doctor and take methadone daily for my pain.” —Stacey, MI

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“It is truly unbearable. Imagine throwing up, chills, fever, and lying on your bathroom floor in pain. It is real, and it is awful. Childbirth was easier.” —Crystal, VT

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“I have had several endometriomas [endometriosis cysts of the ovary] rupture and thought I was dying. It feels like someone has taken a baseball bat and beaten you until you fall down. Then they jump up and down on your belly until you pass out. You can feel the mass bleeding inside you.”—Sharon, KY

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“Your email put a much needed smile on my face. Thank you. I have spent the last few months going from one terribly unhelpful doctor to the next. I have been in terrible pain, bloated to the point where I had to buy stretch and maternity pants, and have had back problems so severe I can hardly walk and sit. Bad doctors keep telling me things such as drink tea and take baths. I finally found a good doctor, who looked through my charts and my report from my first lap. While I was told that all adhesions were taken care of during my lap that was not the case. My endo was also more severe than that doctor had led on. My new doctor was pretty horrified that nothing had been done until now. I have been glued to The Endometriosis Sourcebook [one of the EA’s books]. It has been such an informative and important text for me. I am so grateful to have the support and knowledge of the Endometriosis Association as I have learned more from you wonderful ladies than all of my doctors combined.” —Jill, OK

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“It is so intensely painful that had I a loaded gun, I would use it to end my life…It has completely interfered with my life and my sense of self. And the frustrating thing is that nothing helps ‒ not surgery, not pain medication, NOTHING.”—Elaine, DC

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(Note: if you are feeling hopeless or like ending your life CALL US (1(800)992-3636) or the National Suicide Prevention Lifeline (1(800) 273-8255) or Canada Suicide Prevention Service (1(833)456-4566). Members can call our Crisis Call Listeners.)

ENDO AND OUR FAMILIES

“As a former sufferer of “killer cramps” each month; and the mother of a daughter diagnosed with endometriosis, interstitial cystitis, several allergies and asthma; and grandmother of a 4 year old girl who already has allergies, I want this horrible condition beaten! Thank you for all you do.”―Joan, WI

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“Both of my daughters have endo. Knowledge is a powerful tool, and you have provided us with valuable facts that help us deal with the disease.” ―Nancy, IL

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“I wanted to send you some pictures of my little miracle. She is such a joy and might not be here had it not been for the Association. I owe it to her to keep getting the word out and fighting for less pollution and a cleaner earth!”
(Note: for the environmental links to endo see the Endometriosis Association books.) ―Molly, IL

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“At 15 years of age my daughter started having excruciating pain and nausea so extreme it prevented her from attending a normal school. She was admitted to the hospital at which point laparoscopic surgery discovered endometriosis. Now 5 months later the pain and nausea are returning with a vengeance. …My daughter has dreams of making a difference in the world and making it a better place.” ―Mike, FL

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“I’ve had endo my whole life and I’m 37. Even after tons of dr. appts., I have had to figure it out for myself and still can’t get any good advice. I think my daughters may be at risk—one of them started her period at 8 yrs. old like me. Please help.” ―Anonymous

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“I suffered greatly from endo and didn’t find out until it was almost too late. Now I am watching my 15 yr old do the same. I tried to tell her primary care practitioner but they didn’t listen… 4 days ago she begged me to help just rip it all out… Our whole family was rocked by this illness. I need guidance…my baby needs help.” ―Nicole, TX

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“Please, please, please, focus on helping the thousands of women suffering excruciating pain 24/7! Women who have had multiple excision surgeries, including hysterectomy and appendectomy, but STILL suffer horrendously… Those who have been ABANDONDED by doctors, telling them that it’s impossible for them to still be in so much pain! My 40 year old daughter is one of these thousands suffering, with no help in sight!!” ―Anonymous (posted on endo news discussion)

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“Dear Mary Lou & the Endo Association, I wanted to send a donation to again show my love and appreciation for all of you. You are my heroes… Every time I look at my daughter, my only child, and watch her children grow up, it makes me burst with love and gratitude that they are here because of your dedication, research, and self-less time spent on finding a cure.” ―Linda, IA

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“I feel that my quality of life is zero right now. I have a really hard time doing anything. I’m 49 years old. I can’t even enjoy my 13-month-old grandchild without suffering afterwards. I correspond with others with endo and I feel so sorry for them. I have recommended your site and your books to them. God bless and thank you for all you do for the endo sufferers of the world.”—Debbie, NC

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“Hello ‒ I am a mom who has had severe endometriosis…Now I have a 17-year old daughter who has very bad cramps both with her cycle and in between cycles…It took many doctors for anyone to even believe me about my endo and if she’s starting to have symptoms, I am looking for a knowledgeable person to treat her.” —Sarah, WI

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“My 16-year-old daughter has been battling with endo for the past 1 ½ years or so…Her pain is severe. I’ve had her at the ER about 3 times for pain shots and her prescription meds are barely working. She can’t go to school, she can’t do anything. It never stops. I am so tired of watching her suffer so much.”—Beth, CA

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FIGHTING ENDO

“Women’s health care is so often overlooked and minimalized by professionals unless major financial profits can be reaped. Please continue your tremendous efforts.”―Anonymous

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“Hello, I am 21 years old …. I have been struggling with the extreme mood swings that drive away boyfriends, fatigue to the point that I can’t even hold up a part-time job, not to mention the pain that feels like God himself is punishing me, on top of all that I get to wonder if I’ll ever have children … When I ovulated for the first time, I was 13, I missed soccer pics due to being in the E.R. awaiting surgery …. When I was 17, I finally had enough people telling me to just “deal with the cramps” (that sent me to the hospital for morphine, after taking T3s and losing my jobs) so I went to anyone who would listen. Doctor after doctor, M.D., D.C., N.D., you name it I went to them. I took street drugs, legal drugs, natural drugs, anything to keep me awake and pain free…. I would really like to be the person I am supposed to be but can’t due to this horrible fatigue and uncontrollable mood swings. Please, can you help me?”―D., ON

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“As I read the initial paragraphs [of a Washington Post article] I thought ‘reads like a case of endo, but surely it’s not still baffling doctors.’ There are ads on daytime TV. Yet sure enough, that’s what the diagnosis was… Enough. Enough pain and suffering and denigrating the very real medical condition. Thanks for your continuing leadership!”
—Pam, CA

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“People don’t take it seriously. It’s all this stigma but it’s ruining my life.” Rachel, WA

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“Thank you for everything the Association is doing to help women. During some of my darkest periods it was material from the Endometriosis Association that comforted me and gave me hope when no one else could. I’ve also relied on the material to defend my decisions and gain confidence that I do in fact know my body better than anyone else, especially better than those who may claim that I’m crazy.” ―Mags, ON

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“I suffer from endometriosis. It has impacted my life significantly. I lost two jobs, was kicked out of school, and considered ending my life. I’m passionate about raising awareness for this debilitating disease…”―Monica, FL

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(Note: if you are feeling hopeless or like ending your life CALL US (1(800)992-3636) or the National Suicide Prevention Lifeline (1(800) 273-8255) or Canada Suicide Prevention Service (1(833)456-4566). Members can call our Crisis Call Listeners.)

“My health is holding up…it will be 2 years in January since my last surgery, the longest I have been able to go since I was diagnosed. Nutrition, supplements and being very conscious of products I put on my body have all helped…all things I learned from EA—thank you!” ―Michelle, AZ

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“Dear Mary Lou, EA saved my life literally. I love you, love EA and all those working tirelessly to keep momentum in pushing to cure this disease… We are both indebted to you for your impact on me and on us as a couple impacted by endo.” ―Dorothy, ME

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“I called the gyno that did my surgery… I explained that the pain I’ve been having after surgery is still there… He was SO dismissive and rude! His first ‘thought’ was that I was having withdrawals from the painkillers… His second idea was that I’m ‘imagining’ the pain… apparently I missed it so much my brain is making it up? His last offering of great wisdom was that at 30 years old, one week post-op I’ve developed celiac…” ―Melissa, OR

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“Like many women, endometriosis is ruining my life. I have suffered with this horrid disease since I was in my early twenties. I had another laparoscopy surgery at age 53 and still am suffering… I have never been so low in my life, I lost my job, my independence and my mental health. Thank you for being there.” ―Marianne, NY

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“I cannot, cannot, cannot thank you enough for your help. There is no way. No words can express my deep heartfelt gratitude…After years of appointments with a zillion doctors and getting treated poorly (to say the least), your recommended doctors knew EXACTLY what was wrong with me.”―Deanna, MA

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