Endometriosis Blog: Letters And Petition Sent To Oprah And The View To Create Awareness & Understanding About Endometriosis

Below is the letter I sent to Oprah. Since there is a character limit on emails to Oprah & since there is no option to include the petition as an email attachment, I snail mailed it.

A similar letter was sent to The View .

PLEASE KEEP ADDING SIGNATURES TO THE PETITION!!! I AM SUBMITTING NAMES NOW IN AN EFFORT TO GET A FEATURE ON ENDOMETRIOSIS TO AIR AS SOON AS POSSIBLE BUT THIS DOES NOT MEAN WE CAN'T CONTINUE TO ADD NAMES TO:

Create Endometriosis Awareness & Understanding Petition

Here's my letter to Oprah:

Dear Oprah,

For 26 of my 39 years, I have suffered symptoms of an illness called endometriosis. I have had 7 abdominal surgeries since 1992.

This illness affects an estimated 5.5 MILLION women in North America and 89 MILLION women worldwide.

The definitive way to diagnose a patient with endometriosis is to perform a surgical procedure called a laparoscopy. I had endometriosis for 10 years before I was finally diagnosed at the age of 23. Sadly, this type of lag between onset of symptoms and diagnosis is VERY common.

I was diagnosed in 1992 with endometriosis. I have participated in endometriosis support groups for 16 years. These have been immensely helpful sources of information, support, and resources. Through endometriosis support groups I have met so many strong, caring, empathetic, wonderful women.

Over the years, I have heard so many heartbreaking AND heartwarming stories from women with endometriosis. The heartbreaking stories have covered the impact endometriosis can have on women’s relationships, overall quality of life, career choices, fertility, self-esteem, and overall physical health. The heartwarming stories have covered the many ways endometriosis patients support each other, the ways family and friends show their love and support to patients, and the tales of doctors who respect their patients enough to take their symptoms seriously.

I recently started an online petition to create awareness and understanding of endometriosis. In the short time since I started this petition, women AND men from around the world have signed it. As of now, we have signatures from the U.S., the UK, Puerto Rico, Canada, Australia, and South Africa. I felt it important to write you now (versus waiting for more signatures to be added) because there has been a great deal of press lately for the two women from Dancing with the Stars who have been diagnosed with endometriosis: Lacey Schwimmer and Julianne Hough. These women were diagnosed within days of each other and many media outlets have reported about their diagnoses of endometriosis.

Unfortunately, some of what has been reported in the media about endometriosis (in relation to these two women) has been confusing or even misleading to the public. For example, multiple media outlets report that Lacey Schwimmer received a diagnosis of endometriosis. However, there is no mention of her having had a laparoscopy. In fact, she has not missed a single week performing on the show. Laparoscopy remains the only method for a definitive diagnosis of endometriosis. Julianne Hough’s laparoscopy took place the day AFTER she announced on Dancing with the Stars that she has endometriosis (and that she’d be having her appendix removed during the next day’s surgery). There are no media reports to indicate that she had had a previous laparoscopy. In fact, she was interviewed as saying that she’d had symptoms for the 5 years leading up to her recent surgery. So it would appear that her diagnosis was given PRIOR to the laparoscopic surgery she just had.

While there may well be more ‘behind the scenes’ to Ms. Schwimmer’s and Ms. Hough’s stories that might clear this confusion up, the fact right now is that the general public is hearing that these two women have been diagnosed with endometriosis WITHOUT THE BENEFIT OF HAVING THE LAPAROSCOPIC SURGERY THAT, TO DATE, IS THE ONLY DEFINITIVE MEANS OF DIAGNOSING THE CONDITION.

After hearing multiple media reports about the diagnoses of endometriosis for both women from Dancing with the Stars and hearing the mixed message that the public is receiving, I decided it was important to speak out about the FACTS on endometriosis.

That is why I started an awareness petition and that is why I’m sending you the link to this online petition sooner rather than later. I think it’s crucial to correct the record about endometriosis as soon as possible -- WHILE ENDOMETRIOSIS IS STILL BEING TALKED ABOUT IN THE MEDIA in the wake of the two Dancing with the Stars women’s diagnoses.

PLEASE see the link below to the online petition to “Create Awareness & Understanding About Endometriosis”. It contains 110 signatures & 49 comments to date:

Create Endometriosis Awareness & Understanding Petition

The comments on this petition are eye-opening, educational, heartbreaking, and compelling. At the same time that many of the petition comments break my heart, it is so wonderful to see not just endo patients speaking up but mothers, fathers, sisters, husbands, mothers-in-law, grandmothers, etc!!

It is hard to single any petition comments out because they are ALL so important and valuable. However, one remark that stood out to me and tied together just about all of the other comments was this:

***** “Knowledge is power” *****

One endometriosis patient wrote me pleading that I make sure this petition gets into the hands of someone who can help create awareness and understanding of endometriosis. I feel a responsibility to get this message out to the public.

All who have left comments on the petition seemed to echo this previous statement… that we need to get the petition into the hands of someone with the power and/or ability to help educate the public about endometriosis and to help not-yet-diagnosed endometriosis patients to seek out appropriate medical attention for this serious illness.

I ask your assistance in getting the FACTS about this illness disseminated to the public. If you would be so kind as to consider airing a segment on the topic of endometriosis, we would greatly appreciate it!

This illness affects up to 89 MILLION women. Yet, many women suffer in silence due to factors such as:

* Inability to find a doctor skilled in diagnosing & treating endometriosis

* Misunderstanding or lack of awareness about endometriosis and the symptoms associated with it

I have seen marriages that were strained by endometriosis (many resulting in divorce with endometriosis being a factor that led up to it) and I have met dozens of women who experience infertility and/or terrible pain. I have met women who are unable to follow their chosen career path due to the severity of their symptoms. (This by no means implies that endometriosis patients are not capable and hard-working!! In fact… many endometriosis patients I know personally, of those still physically able to work outside the home, have a tendency to overcompensate for their illness by being very high achievers and being exceptionally productive in the workplace).

Please see my blog on endometriosis and other chronic illnesses:

Jeanne's Endo Blog

Please consider airing a story on the facts about endometriosis. Creating awareness and understanding of this illness is SO important to SO many women and their loved ones!!!

Sincerely,

Please keep spreading the word about endometriosis. Please sign the petition if you have not already done so. Please encourage your loved ones to sign too (anyone wishing to create awareness & education about endometriosis is welcome to sign). The better we spread the word, the more signatures we'll get. If necessary, I can re-submit requests for endometriosis airtime in the future and I'll use the growing online petition when I do so!

Thank you!!

Related link (that contains many other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.