Endometriosis Awareness

Here's the most clear, concise and easy to understand video on Endometriosis I have seen yet. In my opinion, after watching this video you will know all the important points about this disease and its most effective form of surgical treatment. Patrick Yeung, MD on Endometriosis

“Never doubt that a small group of thoughtful, committed people can change the world.  Indeed, it is the only thing that ever has.” -Margaret Mead The part of "My Story" that I'm most interested in sharing will be my long over-due and upcoming treatment for Endo. I've been in touch with The Center for Endometriosis Care (aka the CEC) in Atlanta, GA. and world-renowned surgeon, Dr. K Sinervo. The path that brought me here was a slow one. It took my about 8 years of my own research to find out there's something more than the highly ineffective run-of-the-mill treatment for Endo, and it's actually accessible to me. Stay tuned.

Endometriosis Research Center   The following is an advance copy of the speech Nancy was slated to give at an advocacy event in Washington, DC in 2014. Unfortunately, Nancy will be unable to present in person, but we thank her for generously allowing us to nonetheless share her important words with the world. "When I was diagnosed in 1969, I had pain and one hospitalization after another for 17 years - without a diagnosis.  I did, however, experience multiple scoldings about pelvic exams ‘not really hurting’ as I tried to exit the exam table with the ratcheted speculum still in place and some psychological dismissal because after all, it’s ‘just her period.’ Today, 44 years later, instead of prompt diagnosis and prompt treatment, we see diagnostic delays averaging 9 years.  Nine years of pain, psychological dismissal, and disregard of severe pelvic pain.  We have not come very far at all. Making things worse - some are advocati...

Today, let's hear from  THIS LADY on what she has to say personally and professionally. I would describe her as an icon of Endo awareness! Pardon some typos, as this was copied (with permission) straight from a Facebook posting. Endometriosis Research Center Suppressive Therapy Notes - by Nancy Petersen, RN Ret. 3-16-14 on Sunday, March 16, 2014 at 2:53pm One of the things we have not talked about is medical care the benefits others financially with little hope of helping us. There are legitimate reasons to do a hysterectomy, you have heard me say that before: heavy uncontrolled bleeding, carcinoma in situ not responding or cancerous cells on d&c, severe adenomyosis unresponsive to period suppression, and perhaps other issues related to the uterus. But taking the uterus alone or with tubes and ovaries does not treat endometriosis. There are reasons to do suppressive therapy in women who do not want to give up their uterus but have a very painful one. ...

 I'm pleased to come across several articles like this one , where caring men who stand by their wife or loved one with Endometriosis give their perspective. This husband makes a good point when he says it's hard for his wife to be frank and up front with people about the symptoms she's dealing with. I'm in that same boat. I always downplay what I'm actually going through. I have no desire to tell my casual friends that the reason I'm evasive about making plans with them is because I'm expecting my period around that time and I'll be dysfunctional for 3 days. Or when I call in to cancel an appointment or plans with a friend and vaguely allude to the fact I'm just not feeling the best or "I really can't make it today". It's not because I'm shrugging you off or I don't care. I just can't. I know if I'm sitting with you over lunch, feeling fine, I could be doubled over in pain the very next minute and wondering how I...

Today I would like to share this personal story about Endo that was expressed with such understanding and accuracy. As someone who suffers with Endo, it got my attention. I guarantee it will also get your attention even if you know nothing about Endo, or if you know someone who has it. This is what awareness is all about. Read on. Ed Keates ‪ #‎ Endometriosis‬ ! Chances are, you’ve heard of it. You may even know someone that has or had it. I could explain medically, what it is, or how it gets there, but you would stop reading. Instead, I have some home truths about Endo and it’s affects. The most common reaction to it being mentioned by most people, mainly women, is, “Oh, I have a friend that’s had that. She’s alright now though.” My wife has suffered with Endometriosis for over 10 years and I’m afraid she’s not “Alright now.” “Oh, can’t they do something for her, something to control the pain?” No it’s incurable. “There’s really nothing they can do?” No. Endome...

Here's an article that touches on treatment of endo. There's a huge difference between standard treatment and effective treatment. I'm hoping that effective treatment lies within my near future. I was relieved to find a good description of endo pain, in words that I think will help people 'get' it. The key phrase here is that "Endometriosis pain is on par with acute appendicitis ." Appendicitis, ok? It's like, 'Lay me on a stretcher and carry me out of here' kind of pain. Please read the article for more information on treatment approaches. Endometriosis pain is on par with acute appendicitis.  Patients develop peritoneal signs and symptoms, (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, anxiety etc etc) something every medical student and nursing student has been well educated to look for in patients.  But in endo patients we can somehow say, “oh it’s just her period”.  If you think about ...

Here's an overview from the Cleveland Clinic , which will shed light on some details of the disease. A few points to highlight are that we don't know the true cause of Endo but there are several differing theories and there is no known cure. Endo is one of the top three causes of infertility, and 30-40% of women who have Endo are also infertile. Endo and its subsequent pain may or may not go away after Menopause.

Something that really needs to improve with this disease, is timely diagnosis. Something is wrong when it takes 8-10 years before a woman can finally be told what's actually "wrong" and be officially diagnosed. This is exactly what I experienced! I'll talk more about effective treatment in another post. Timely diagnosis and effective treatment are what's needed to restore our best quality of life and preserve fertility. http://infertility.about.com/b/2014/03/03/endometriosis-awareness-month.htm March is Endometriosis Awareness Month in the United States, and various weeks in March are designated for endometriosis awareness all around the world. There are many diseases and causes which have "awareness" days, weeks, or months. In my opinion, endometriosis desperately needs this time period, when people make a special effort to reach out and educate people about this disease. Why? Because endometriosis is often misdiagnosed or simply over looked....

Listen to this great audio description by Dr. Ken Sinervo Dr. Ken Sinervo, M.D., MSc, ACGE, FRCSC Dr. Ken Sinervo, M.D., MSc, ACGE, FRCSC is the Medical Director of the Center for Endometriosis Care in Atlanta, Georgia. The recipient of such awards as the Dr. Fred Douglas Memorial Award for Outstanding Achievement in Medicine and the University of Western Ontario Department of Obstetrics & Gynecology Research Day Award, Dr. Sinervo is a pioneer in laparoscopic excision (LAPEX), which he has developed alongside Dr. Albee. Dr. Sinervo is recognized by patients and colleagues for improving the lives of his patients and making waves by offering and developing the latest in cutting-edge care when it comes to treating endometriosis.

An announcement from Dr Camran Nezhat ENDOMETRIOSIS: A PAINFUL, DEBILITATING, AND COMMON DISEASE Updated January 30 2014 Want to make a difference in the lives of more than 200 million women with endometriosis? Then please join us for the first ever Worldwide Endo March. This event will take place in more than 53 cities around the world, including Washington, D.C. on March 13, 2014. Though you often don’t hear much about it in the news, endometriosis is common; an estimated 1 in 8 women and girls are affected and suffer from mild to severe pain as a result of the disease. Unfortunately, endometriosis often goes undiagnosed for 6-10 years from the initial symptoms because the pain may be mistaken for normal menstrual cramping, and it can mimic other diseases. As a result, preteens and teenagers have particularly high rates of misdiagnosis. You may be aware that endometriosis can damage the uterus, ovaries, and fallopian tubes. But did you know the foll...

support awareness   Endometriosis Awareness 2014 Endometriosis Awareness takes place across the globe during the month of March with a mission to raise awareness of “the invisible disease”, which affects an estimated 176 million women. Endometriosis  can have a devastating  effect on quality of life  due to the painful symptoms; it is the biggest cause of  infertility  in women, and it  carries a huge personal and societal cost ! Awareness to highlight these issues – and to call for investment into research – is happening  within local communities, regionally, and nationally, and provides an opportunity to  raise funds for research  into better treatments!

endometriosis.org Is endometriosis all in your head? By Robert Albee Jr MD In this opinion piece I wish to address the psychological impact of undiagnosed endometriosis on young women. Dr Robert Albee, Center for Endometriosis Care When endometriosis is discussed amongst healthcare professionals, one of the most consistently overlooked related problems is the psychological impact of the disease on younger patients (particularly teenagers). It is true in my experience that all of humanity is generally compassionate towards young people with disease or injury; yet, this is not true of many of the young women who are disabled by pain from endometriosis . The harsh reality is that unless they have a parent or a healthcare professional who believes in them and stays on course determined to understand the reason for the pain, these young women often face dramatic changes in their lives once the symptoms of endometriosis become severe. Why is there a diagnostic d...