Friday, May 31, 2013


Recently, I heard Dr. Tamer Seckin, co-founder of the EFA and a leading world expert in endometriosis surgery, describe endometriosis as a disease in which the patient feels as though she is constantly being tortured.   I thought that was quite an accurate description of a disease that has plagued me since I was 14 years old. Chronic pain and fatigue, excessive bleeding and swelling, diarrhea and bladder issues are just some of the many symptoms that I and so many other women in the endometriosis community face on a daily basis.
Unfortunately, the general public is largely unaware that this disease exists, never mind the tremendous impact it has on our lives.  So we are often dismissed as constantly sick for no good reason, weak and even hypochondriacs. No one can see the way our organs are fused together or how adhesions are often pulling our insides in a way that can make even standing up extraordinarily painful.  As wives, daughters, mothers, friends, co-workers, and students we are expected to live up to our societal responsibilities and roles as we endure the physical and emotional side effects of this debilitating disease.  We often choose to suffer in silence and carry the burden of this disease alone, because honestly, it is a hard and often awkward disease to explain, “You see, it all started when the lining of my uterus somehow escaped my uterine cavity…”  But we know we are not hypochondriacs. We are simply amazing.

Endometriosis patients are some of the strongest, most determined and most resilient women I have ever met. We are ENDOSTRONG.  What does ENDOSTRONG mean?  ENDOSTRONG means listening to our bodies when we need to take a sick day or even medical leave because the disease is too overwhelming. ENDOSTRONG means choosing another doctor because we are not getting the medical treatments we need. ENDOSTRONG means bravely facing our 3rd, 4th, or in my case, 5th endometriosis related surgery with no guarantee of relief, only a hope and a prayer that it will work.  ENDOSTRONG means accepting the lifestyle limitations endometriosis can bring and accepting the help of those around us when things get bad.  ENDOSTRONG means addressing the emotional impact of this isolating disease whether it’s seeing a therapist or joining a support group.  ENDOSTRONG means taking the time to take care of ourselves even though we as women have been taught from an early age to put our needs last.  ENDOSTRONG also means helping to take care of each other by forming a supportive community and sharing our stories and experiences. ENDOSTRONG also means raising public awareness and banding together to find a cure.

Who is ENDOSTRONG?  The nurse, who despite her pain, gets out of bed and works the night shift taking care of critically ill patients is ENDOSTRONG.  The young professional who passes her tax exam shortly after recovering from surgery is ENDOSTRONG.  The hopeful mother who is on her 5th IVF cycle after experiencing multiple losses is ENDOSTRONG.  The high school senior who despite missing her graduation because of her period manages to keep a positive outlook on life and have hope for the future is ENDOSTRONG. All of the women in third world countries who cope with this excruciating disease without any healthcare, medications or surgical relief are certainly ENDOSTRONG.  We all are the faces of endometriosis and together we are a force to be reckoned with.

I am proud to be a part of this community of women. We are survivors.  Every day we accomplish the ordinary while dealing with the extraordinary. It is an honor and a privilege to be working with the Endometriosis Foundation of America and, through these blogs, to be able to communicate with even more members of the endometriosis community. I hope we can start an endometriosis revolution and combine our extraordinary strength to raise money to find a cure for this disease while raising public awareness for our cause.   My dream is one day when my daughter is grown, 20 years from now, she will say, “Wow, I can’t believe when you were growing up so many people never even heard of endometriosis.  I am so glad they found a cure. ”

To help spread awareness and raise money for endometriosis research,  I have started a store on Zazzle where any proceeds I make from the sales will go directly to the Endometriosis Foundation of America. I was inspired by my friend,  Jen Rutner , who has been selling the #hope T-shirt for years now!  We have t-shirts, we have onesies, we have furbaby accessories and we also have ENDOSTRONG stickers specifically designed to fit onto Sharps containers for ENDOSTRONG women who are cycling. Please check the store out and let me know what you think!

You will also be able to find my official EFA blogs posted in the future at . But please note this is my personal website and posts on this site may or may not reflect the views, mission and beliefs of the EFA. 


  1. You just speak from my heart! Appreciate your accurate describtion of our disease! I've been fighting Endo since 20 years, I am now 46 and had 12 operations, numerous therapies and still fighting it. The worst thing for me is, the misunderstanding of this disease by family, friends and work. This is sometimes more destroying than the pain, People you love, who just don't believe you! Wish I could do more, to let doctors, people, co-workers and everybody else surrounding my life understand more about our disease. Trying to work on acceptance in Germany, but it is a long way to go! Maybe this is the purpose of our disease? I don't know, but really appreciate your letter here, makes me feel "normal" and not crazy :) Thank you so much and God bless you! Sincerley Katja

  2. Katja thank you so much for reading and for sharing your story with me, it helps me feel "normal". Sending you a lot of love as you fight this disease. Glad we have each other and can stick together.

  3. Wow. How inspiring! Thank you, yet again, for raising awareness about this disease and for educating people (me included) about what it's like to live with it. How cool that you are raising money too! Good for you.

  4. I am so glad I found this website. As I prepare for my second endo surgery this gives me hope. Sometimes I feel so alone and feel like no one understands my pain. You are an inspiration to me and many others!