Friday, March 4, 2011

My Plea to remove News Max Endometriosis Post

Yesterday Endometriosis Research Center posted a article written by News Max  about Endometriosis that really upset me.  

You can go and read the article and then come back and let me tell you why it upset me so much and tell you about all the things that they stated incorrectly. 

Go ahead I'll wait.... 

Endometriosis: Top 10 Treatment Centers

Ok now that you have gone an read the article you have an ideas of why I'm upset .

This was my first reaction. Quoted and Copied from Facebook:
Carrey Hoese Ok, who wrote this post? What an IDOT! First there is no cure, second Endro is not just located in the uterus and third you can't just pop what they call cysts, and where I'm from Lupron is used not progestin or danazol! UGG! What idiots! 
There were 34 comments on this one post alone.  Quite good response from one post.  The general concession was that they got their facts wrong and are mis representing the disease.  They have no idea what it is and the places they have listed in their article are infertility clinics.  Not Endommetriosis centers.  Yes infertility is one very awful thing that can happen but is not always the outcome of the disease.  And they also mention that if you do get pregnant that it will "cure" it.  Bull!  Endo never goes away, it is always present but can be controlled sometimes by Healthy eating, vitiams, Birth Control pills and such.  I have found that if I eat right, exercise and take my vitiams that I can control most of the pain.  But like I said this is what works for me.  What works for me might not work for anyone else.  

I am working on a post that explains my situation and want to be able to share it before the end of the month.  I have wrote other post about how Endomotriosis effect my life and if you would like to read them they are listed below.  

The Endometriosis Research Center  emailed News Max with corrections to their article but has yet to here anything back. Below I have posted the email and would like to share it with you so you can understand the real causes and symptoms and centers dedicated to Endometriosis.

Thanks for stopping by.  If you would like to help spread the word please visit Endometriosis Research Center and The Endometriosis Foundation of America on Facebook.  Stop by and "Like" them both.

And if you feel so inclinded you can tweet to get News Max to remove the post or fix their mistakes or put this in your Facebook Status:


I'm sending out a Plea....Newsmax Media Please remove your post about Endometriosis. It contains so many incorrect items. You have no idea how you are hurting the people affected by the Disease! Repost if you know and love someone that suffers from Endometriosis! Please help me get them to remove it.

My blog Posts:


To Whom It May Concern:

Thank you for including the Endometriosis Research Center among your list of "Top 10 Treatment Centers" in the article of same name.  However, like much else in your article, inclusion of our organization in your listing is factually inaccurate.  We are a 14-year old 501(c)3 tax-exempt, tax-deductible foundation for research facilitation, advocacy, support and education.  We are not a treatment center.

Likewise, several other points in your article beg correction if you wish to share factual information with your readers about the disease.  This officially being Endometriosis Awareness Month, it is imperative that society be given valid data.  Please correct the following inaccuracies:

- "This excessive growth can form cysts or interfere in the functioning of the uterus and associated organs."

Endometriosis is not "excessive growth".  It is invasive implants of ectopic, aberrant endometrium.  It seems you have confused endometriosis with endometrial hyperplasia – a very different disorder.

- "The symptoms of endometriosis are constipation, fatigue, pelvic pain, extreme pain in legs and thighs, excessive flow during menstruation, headache, and depression..."

Depression is not a symptom of endometriosis, but part of the sequela of living in chronic pain with a misunderstood - and often misreported - disease that has no cure.

Symptoms include those you mention, but it should be noted that it would be more appropriate to denote "extreme pelvic pain" vs. "extreme pain in the legs and thighs" - while the pain of endometriosis can indeed travel and refer, it is inaccurate to place the emphasis on pain in the legs.  As for "constipation" - you missed "diarrhea", very common in women and girls with the disease, as well as urinary difficulties - which you tie in incorrectly later in the article -  and painful intercourse/pain with sexual activity and infertility/pregnancy loss.  Those are hallmark symptoms and should have been included herein, vs. later mention.

-"[it] can eventually lead to urinary tract infection, irritable bowel syndrome, and infection of the uterus or infertility and sometimes both."

It is imperative that you edit your article accordingly as soon as possible or risk continuing to misinform your audience.  To be certain, endometriosis IS NOT, NOR IS ASSOCIATED WITH, AND DOES NOT LEAD TO, infection of any kind.  You may be confusing the urinary symptoms with interstitial cystitis, often present in women with the disease.  However, neither disorder is infectious.  Likewise, endometriosis is NOT endometritis – a true infection.  Please change your page to reflect factual information.

- "Treatment for endometriosis depends on the extent of the condition and associated symptoms. The most common treatment method is hormone medication with oral contraceptives or progestin or danazol. In advanced cases, surgery may be imperative."

In actuality - surgery is REQUIRED for a diagnosis and is more effective - even in the short term - as a treatment measure, when the implants are surgically removed.  Danazol is a decades-old treatment rarely used any longer as hormonal suppression, replaced over the last 15+ years with GnRH agonist therapies and others.  NO medical suppression is curative, regardless, and will only afford temporary relief (if at all).

- Endometriosis treatment centers provide medical as well as surgical treatments."

You are mistaken.  The specialty centers calling themselves “endometriosis treatment centers” – which are very few and far between - are *surgically* based.  Some offer complementary care as part of their surgical excision technique (i.e. recommending certain supplements, diet/nutrition measures, acupuncture, pain management, etc.), but they DO NOT offer medical suppression (Dr. Redwine, Dr. Cook, Drs. Albee/Sinervo, Dr. Seckin, etc.). This is what sets them apart from the ob/gyn generalists across the country who routinely use superficial surgical approaches and hormonal therapy in their patients – which only, ultimately, lead to untreated disease and recurrent pain and symptoms.  They are operative in nature, with the goal being to remove all disease from all locations in hopes of long-term relief for their patients.

Likewise –

- "Since endometriosis can cause infertility, endometriosis treatment centers provide fertility treatment aimed at reducing or curing endometriosis and facilitating fertilization...Another important treatment provided at treatment centers is invitro fertilization."

You are again confusing the true endometriosis treatment centers with infertility/reproductive endocrinology centers.  Again - those treatment centers which do exist do NOT facilitate IVF/ART/etc., and none offer 100% cure rates. You are also misleading your readers into assuming because they may have endometriosis, assisted reproductive technology will be required.  This is not the case whatsoever.

- "In many case of endometriosis, the symptoms disappear after pregnancy and in some cases the symptoms completely cease to exist."

This is completely inaccurate.  Pregnancy, menopause and hysterectomy as cures are century-old myths propagated by the misinformed.

As for your 10 listed treatment centers, you have largely failed to include actual endometriosis treatment centers, opting instead to offer a list mostly comprised of IVF centers and reproductive endocrinologists.  While reproductive endocrinologists are indeed very adept and helpful in the infertility setting, most are not endometriosis experts and do not address the disease – they address the symptom of infertility.  This is not the same as treating the disease.  Very few of those you have listed are actual centers for endometriosis-specific care, and you have made some glaring omissions from your roster.  Similarly, as noted above, we, in particular, are not a treatment center at all.

Your assistance in getting these glaring errors corrected for the good of your readers and to further avoid the spread of misinformation - which already exists in abundance - on endometriosis is greatly appreciated.  176 million women and girls struggle with the disease around the world; society suffers a near $22 billion impact annually as a result of associated costs.  It is far from an insignificant disorder which is easily cured or treated.  Please help promote fact-based, accurate information to make a positive difference.

Thank you,
Endometriosis Research Center


  1. Good for you for taking a stand and requesting accurate information from our media.

  2. Thank you! Its something that I am very close to and there is so much misunderstanding about Endo in the first place. People need to know the truth.