Top 10 Facts Every Woman Should Know About Endometriosis
1.) Period pain is NOT normal.
2.) This disease affects women all across the world regardless of race, class or socioeconomic status.
3.) Endo can start very young. Many of our members report that they have had symptoms since their very first period.
4.) Endo is primarily an imbalance in the immune and endocrine (hormone) systems. The presence of lesions in the pelvis is the tip of the iceberg.
5.) Endo is not completely cured by surgery alone. The underlying environment throughout the whole body must be addressed in order for the woman’s health to be truly improved and to hopefully avoid other health problems related to endo.
6.) Endo is not cured by pregnancy. Some women do have relief of symptoms during or after a pregnancy, but others have worsening. A woman should never be pressured into having a baby as a “treatment” for a medical condition.
7.) Environmental toxicity plays a critical role in the development of endo. The EA discovered in its original research that dioxin can lead to the disease. Dioxins are found in pesticides and contaminated food grown with pesticides. (Eat organic―see the Environmental Working Group’s site, www.ewg.org for the “Dirty Dozen” most contaminated foods.)
8.) Many other health conditions are found at higher rates in women with endo: irritable bowel syndrome, migraines, allergies, intestinal dysbiosis, hypothyroidism. Plus a higher risk for numerous cancers, autoimmune diseases (such as MS, lupus, etc.) and heart disease.
9.) Diet and lifestyle changes do make a difference. While medications and surgeries are important options for women suffering with endo, it’s important to do what you can. Take your health into your own hands with the choices you make every day.
10.) The Endometriosis Association is working hard to make REAL CHANGE in the medical world so that women and girls with endo can have the very best care and treatment options available to them!
Want respect? Speak up!
YOU hold the key to ending the scandalous treatment so many millions are subjected to worldwide.
Even if you are stuck at home during this pandemic you can take action against this disdainful treatment with a straightforward letter, as a former patient, to healthcare providers who were dismissive. No anger please—it just makes people defensive. Write something like, I came to you with these symptoms and you told me they were normal (or whatever). Since then I was diagnosed with endometriosis—I lost a job because of it, husband or partner walked out due to pain with sex and/or constant sickness, have been unable to have a child, (or however it affected you). Without anger, ask the physician(s) to please not tell girls and women what you were told. They can learn more at the website of the Alliance for Endometriosis —allianceforendo.com.
And let those who listened and helped you know also. Thank them and they’ll tune into endo even more.
Taking this action will be psychologically healing for you and that physician may become more attuned to endometriosis. Please share a copy of your letter with us (a cc on the bottom of the letter or email has even more impact). Do NOT do this in person or on the phone – it doesn’t allow the recipient the opportunity to calmly consider the contents before reacting.
Your donations and voice make a difference—fighting back, asserting your dignity, validates to yourself and others that you do indeed deserve R-E-S-P-E-C-T. And you make a difference for others, too—you may save that frightened teen girl from being treated badly when she most needs help. You may save a woman like our member N., who had been treated so badly by doctors that she refused to seek medical attention even as a cyst was enlarging inside her. She died from the ovarian cancer.
Now is the time to stand up for ourselves! Write your letter today.
Example Letter #1
Dear Dr. N.:
You may not remember me, but my name is G.R. and I was your patient back in 2016. At the time, I was experiencing excruciating pain in my pelvic area that was misdiagnosed as chronic constipation. I came to you with these symptoms and you prescribed me medications based on your diagnosis of chronic constipation. The medicine did not work and the last appointment I had with you, you stated you didn’t know what else it could be and would refer me to a surgeon. I felt defeated after this appointment and felt like I would have to live with that pain for the rest of my life.
I didn’t hear back from you. However, since then, I was diagnosed with endometriosis. I had to have four surgeries that literally changed my life…. Please do not tell little girls and women that you do not know what else to do. Please refer them to a Gynecologist or a specialist that is familiar with endometriosis. You can also tell them to contact the Endometriosis Association at endo@EndometriosisAssn.org for more information.
cc: Mary Lou Ballweg, President/Executive Director
Endometriosis Association International Headquarters
Example Letter #2
Dear Dr. Savior,
Thank you for greeting me with a non-judgmental approach that I will never forget. Thank you for greeting me with knowledge that others before you did not possess. Thank you for answering my call, thank you for giving me the tears that came out of relief; relief that I may finally be free from this pain.”
Editor’s note: Kristin’s letter, along with letters to Dr. Dismissive, Dr. Uninformed, and Dr. Healer, appeared in “Tight Lipped Zine Vol. 1. Order the Tight Lipped Zine.
Example Letter #3
I am writing to bring attention to the treatment I received from you when I was a patient of yours in 2016.
During the months that I sought your help, I suffered from an assortment of endometriosis symptoms that caused me great pain and mental anguish. My first appointment with you was on August 2, 2016. On September 28, after a variety of tests, we moved forward with a laparoscopic procedure. It was during that procedure when you found stage one endometriosis and removed it via ablation. From there, we began Zoladex injections. Soon thereafter, I started experiencing terrible side effects. I stayed bloated, constipated, tired, and suffered from severe depression, which are Zoladex side effects.
I was suffering so badly; my mom came to stay with me. In fact, she came with me to my February 3, 2017 appointment with you where I sobbed to you in your office as I described all the symptoms I was suffering from. You wrote me a prescription for water pills for the bloating and told me to look into seeing a psychiatrist. During another visit, you suggested I “go out there and get pregnant” to get rid of the symptoms. Mind you, I was single and that is not an endometriosis solution.
Anyway, I felt completely ignored, dismissed, and humiliated by your dismissive behavior toward my suffering and plight. So much so that I never came back to see you and began to give up. I thought if my own doctor isn’t going to listen, take me seriously, and really help me then no one will.
A few months went by and I was a complete mess. My endometriosis symptoms came right back – bleeding, cramping, bloating, migraines, backaches, spotting; the constipation, lack of energy and tiredness, and severe depression were still there, but much worse. Thankfully, I never gave up on myself and sought out someone with endometriosis experience. Dr. B. was thoughtful and professional toward me, listened to my symptoms and reviewed the medical records. We decided to move forward with another laparoscopic procedure. On August 16, 2017, almost a year since my surgery with you, my second laparoscopic procedure was performed. This time, Dr. B. found stage four endometriosis and removed it via excision. He also helped me with a post-surgery plan to help me keep the endometriosis at bay.
Since then, I have joined many endometriosis support groups, become an Ambassador for the Endometriosis Association, and become active in endometriosis education.
I had a hysterectomy in August 2020 and work with a holistic doctor to take vitamins and herbs to manage my symptoms, not hormones or other medicines because they mess with me mentally and physically. Regardless of the hysterectomy, endometriosis can come back.
The goal of my letter to you is to be heard and acknowledged, but my letter also coincides with March, which is Endometriosis Awareness Month. I wanted to use this month to make you aware of how you made me feel. I hope that since I saw you, you have softened and treated women with endometriosis better than you treated me. This illness is not a joke. It affects every aspect of our lives and we look to you for help. Please take it seriously.
cc: Endometriosis Association International Headquarters
Editor’s note: Lindsey said writing this letter took a weight off her.