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3/01/2009

'Jeanne's Endo Blog': Sample Letter To The Media From "My Journey With Endometriosis"

My Journey With Endometriosis is one of my favorite blogs. When I asked readers to contact Mariela Azcuy, Senior Associate Director of PR for Meredith Corporation (see related links at the bottom of this post for much more information), I was copied in on the following fantastic letter! With permission, I am reprinting this letter here as a "sample letter". Some of you may recall seeing a previous "sample letter" posted on my blog. (That one was written by Endochick).

These sample letters are well-suited for contacting others in the media besides Ms. Azcuy as well. These letters are being shared to inspire you to write in with your own story and your own personalized request for coverage of endometriosis facts in the media.

This particular letter was sent to Ms. Azcuy and I was copied. It is a fantastic glimpse inside the tumultuous world of one endometriosis patient. Let's hope the media is listening. (I should note here that Ms. Azcuy was kind enough to acknowledge that she did receive this letter. We appreciate Ms. Azcuy's assistance in getting our requests to the editorial staff and health writers at Meredith Corp.)




Dear Ms. Azcuy,

My name is _______, I’m 28, and I am living with stage IV endometriosis. I read a copy of the article from More magazine, which was forwarded to me by Jeanne from Jeanne's Endo; and, I just wanted to write to express my interest in endometriosis being covered in a more factual manner than it has recently in main stream media.

My case is a little different from most that suffer. The time to diagnosis is something around an average of 9 YEARS. I cannot imagine having suffered that long without answers! My disease actually presented itself in GI manifestations (a few months after coming off birth control for the first time in 9 years), making it pretty tricky to pinpoint a cause. I was bounced from appointment to appointment and medication after medication. After a few months of the back and forth, I was sent for a CT scan because it was suspected that I had appendicitis. At this point I was very ill... I lost about 20 lbs in a month or two because of my pain and contrast GI symptoms. I also noticed during this time that my monthly cycle was also becoming unbearable.

My CT, luckily, showed a large cyst on my right ovary, and some colitis. I say luckily because endometriosis does not usually show up on a scan. But, because I had a cyst…I was finally headed in the right direction. Less than a month, and three ER visits later, I had my first laparoscopy. My case was so bad that when they put the scope in to examine my abdomen, all they could see was one giant mass-all my organs were sticking together. They attempted to get what they could while I was in surgery, but, unfortunately a lot of the colon adhesions had to be left behind for safety reasons.

After diagnosis I was ready for treatment. But, I soon discovered…there was no real treatment for this disease. I took a medication called Lupron Depot which put me into a medically induced menopause. Believe you me... at 28, that was pretty traumatic. I knew the drug would only be a temporary fix, and, I took a big risk taking it. SO many women have had some seriously ill effects from this drug…but, I needed relief. Also, I wanted a chance to conceive.

My husband and I had been trying for some months prior to my diagnosis. After surgery, I learned that we had a high likelihood of having a difficult time conceiving. We sought experience from a reproductive endocrinologist (RE) after I was done with the Lupron. We have been trying now for almost 2 years with no success, even now with some fertility drug assistance.

In 4 weeks now I am facing my 2nd surgery in 13 months. I have another cyst on the same ovary (called an endometrioma, and, unfortunately their nature is to grow back... no one knows how fast or furious). It is now 6 CM, and, the time has come to remove it. I have a team of two specialists this time around-an RE and a GI surgeon. The goal of this surgery is to get as much of this cyst with as little of my ovary as possible, and, to hopefully clean my colon adhesions without having to have a resection. After this surgery, my husband and I will be going through IVF.

When I got married 3 years ago, I never imagined the “In sickness” part of the vows would happen so quickly. It has been a very stressful time for us in our early married years. But, we have overcome the trials and tribulations, and, I know we will come out of this better, stronger people. I know some people are not as lucky as I am to have such a wonderfully caring and devoted husband. I know endometriosis can ruin lives and marriages.

I am reminded constantly of my battle with endometriosis. My most severe symptom, still, is constant nausea. I’ve learned to cope finally, but, it’s been difficult. And, some days are easier than others.

Endometriosis is such a misunderstood illness. I must say, before my diagnosis, I thought it was a pain disorder. It is so much more about pain. It’s physical and emotional pain. It’s the pain of knowing that I may one day not be able to have my own children…to look into the eyes of a child and know it’s mine. It’s the pain of wondering if I am going to have to have surgery every year... or, wondering when it’s going to come down to a hysterectomy (even though this is not a recommended treatment). It’s the pain of wondering, what’s next in this “saga” of a disease.

I am hoping that you would consider doing an article on endometriosis for a future publication with the intent of getting the facts about the disease widely distributed. It is my hope that one day, young women may not have to go several years without having a name to call their illness, and won't have to go to several different doctors and being made to feel that what they are experiencing is "in their head" before they find hope for relief. It is my hope that there would be a call for more research and more intense study in the medical field. I would invite you to help in making this a reality.

Best Regards,

____________

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Thank you to My Journey With Endometriosis for giving me permission to share this letter in an effort to inspire others to write in requesting endometriosis coverage. Her positive attitude despite such adversity is inspirational!!

Here is Ms. Azcuy's contact information if you wish to request mainstream print media attention for endometriosis facts:

Mariela Azcuy
Senior Associate Director of PR
Ladies' Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017
212.551.6955

mariela.azcuy@meredith.com


Related links:

Link 1 (VIDEO):

VIDEO: Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

Link 2:

Friday, February 20, 2009 "Jeanne's Endo Blog": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

Link 3:

Monday, February 23, 2009 "Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!


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

2 comments:

Yaya said...

What a great sample letter! Thank you for sharing!

Jeanne said...

Alicia,

Isn't her letter wonderful? It is so helpful when people share their personal stories like this because it inspires others to do the same and because it makes fellow patients who read the stories feel less alone. She really wrote a terrific letter to Mariela Azcuy.

Let's find some additional media contacts so that we can put these excellent sample letters to use for contacting all sorts of media reps! Rather than re-invent the wheel, we can use the same letters we sent to Mariela and send them to others.

You never know! One of these contacts might just read our letters and decide to do a feature on endometriosis facts. Wouldn't that be great?!?

She did an awesome job! This is a wonderful "sample letter" to inspire others to step up and share their stories in an effort to help themselves and others. That's a beautiful thing!

Jeanne

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