'Jeanne's Endo Blog': Stacy's Endometriosis Story - Preview of the CureTogether Book "Endometriosis Heroes"

My dear friend Stacy wrote the following piece for inclusion in a book CureTogether will be releasing shortly called "Endometriosis Heroes". Here is her story, written just a few days ago...

I have endometriosis and I can't tell you how much I appreciate seeing information about it. My hope is that someone will see themselves in my story and be able to get a diagnosis much sooner than I was.

From the time that my menstrual cycle started I was in horrible pain each month. I remember in junior high school having to run out of classrooms because my heavy flow would soak through a tampon and a pad before class was over and teachers would not let us use the bathroom midway through class. The pain seemed to be worse when it was hot out and I would lay on the floor of the basement for hours at a time because it was just too painful to move. Because my cramping also came with diarrhea I had a number of tests on my upper and lower GI system. When the doctors didn't find anything they told my parents I was a hypochondriac. No one considered that I may have gynecological issues.

During college I finally purchased health insurance and began the journey of finding out what was wrong. Eventually I had laparoscopic surgery and was diagnosed with endo. I saw more than a dozen doctors during this time. I was in pain and scared. I got married just before my diagnosis and as my health deteriorated so did my marriage. My husband felt "duped" by marrying a healthy, energetic person who was now debilitated by pain. I tried everything: having nerves in my presacral area severed, acupuncture, massage, biofeedback, physical therapy etc. Eventually my marriage ended and I feel it was a direct result of the endo.

I am now happily remarried and mom of a precious little girl and I still struggle with endo. My period started today and to say that I am petrified of the pain I will be feeling over the next three days (despite narcotics) is not an exaggeration. I was able to give birth to my daughter without pain medication because labor actually hurt less than my monthly period. I pray that my little girl will not grow up to have endo and that research will save future generations from this pain. I find it very sad that my great grandmother and I have dealt with the same disease and that there was not much more that could be done for me in comparison to what was done for her when she was my age.

My advice to someone with endo is this: find a doctor you can trust who respects you, follow every path you can to manage your pain, focus on the positives in your life and be thankful you have been blessed with the gift of life.

Thank you for sharing your story, Stacy!! Sharing our stories helps educate the public and make fellow patients feel less alone!

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

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

'Jeanne's Endo Blog': My Letter To Mariela Azcuy of Meredith Corporation...

This is a letter I emailed to Mariela Azcuy yesterday. It was a follow-up letter regarding our letter-writing campaign to Meredith Corp. requesting media print coverage for endometriosis FACTS. Please keep writing to Mariela Azcuy!

Ms. Azcuy,

Today is Day 2 of Endometriosis Awareness Month. We are very busy!

I would like to take a moment to express my deep gratitude to you for passing along our pleas for coverage of endometriosis facts in national print media! Your emails back to me and others (I know you had written back to __________, for example) give us hope and let us know that our letters are being routed to your editorial staff. Your kindness in taking the time to acknowledge our efforts and requests for factual coverage of endometriosis gives us hope!

As Endometriosis Awareness Month kicks into full gear, I am continuing to publish “sample letters” on my blog to inspire more endometriosis patients to come forward with their stories. I’m not sure how many letters you have received about endometriosis coverage besides mine, ____________ and __________'s but those are the ones I’ve been copied in on.

Endometriosis affects more people than AIDS or cancer! (Source: The Ohio State University Medical Center website):

Statistics: Gynecological Health at a Glance

The above statistic shocked me. You’d never know endometriosis affects more people than AIDS or cancer by reading what is currently available in the mainstream media.

With 89 million women and girls affected, endometriosis deserves media attention presented in a factual manner. Too often, myths about endometriosis are disseminated in the media… causing confusion to the public and for patients. After reading the More magazine article, “Ill in a day’s work”, by Donna Jackson Nakazawa... I am extremely excited at the potential for such a high quality article to be printed about endometriosis. So are my fellow endometriosis bloggers. We just loved that article on chronic illness!

Women and girls with endometriosis deserve for their illness to have basic awareness and understanding. So often, the general public has neither and the media can help with this problem immensely.

Our petition for endometriosis awareness has been picking up steam and has more signatures than when I sent it previously. If you take a peek at the heartbreaking comments on it, pleading for awareness and media coverage of this devastating disease, you start to get a glimpse at the profound impact endometriosis has on patients AND their loved ones. We now have 247 signatures and counting.

Sign our endometriosis awareness petition here!

You had indicated that More magazine’s target audience is women ages 40 and up. Having recently turned 40, I could very easily write a piece to appeal to this demographic. It would be my honor and privilege to do so and More would have a free article.

You had indicated that Ladies’ Home Journal would be looking more for stories on prevention and wellness. Having lived with endometriosis for 27 years and talked with hundreds of endometriosis patients, having participated in local endometriosis support groups since 1992, having started an endometriosis support group in my area in 2001, and having written my blog since 2008, I could easily write an article with a prevention and wellness angle. While it may not be possible to prevent endometriosis from expressing itself in those genetically predisposed to it, I could certainly write tips for early intervention, early diagnosis, and aggressive management of the disease with the goal of preventing things like loss of fertility or quality of life. By taking charge early on and learning to advocate for themselves about endometriosis, by finding the right doctors to manage the disease, and by learning about the wide variety of options available above and beyond Traditional Western Medicine (“drugs and surgery”), women have the power to manage their symptoms more proactively than if they passively wait for their doctors to make their healthcare decisions for them. I could write an article about prevention in the sense of “preventing symptoms from escalating out of control as easily”. As far as wellness, there are countless ways I could approach writing about endometriosis with a wellness angle to the article. Again, I would be extremely honored to write such an article and Ladies’ Home Journal would have a free piece to print.

If I sound fixated and passionate about endometriosis, it’s because I am. After 27 years with endometriosis and after hearing countless heartbreaking stories from other women who have been misdiagnosed, under treated, have had a delayed diagnosis (average diagnosis is 9.9 years after onset of symptoms), and have been treated like (or even told!) by doctors that their symptoms were in their heads, women are understandably frustrated that this illness does not get factual media coverage.

Endometriosis affects more people than AIDS and cancer! Shouldn’t we be hearing more about it in the media? The societal taboos associated with an illness that involves (for some endometriosis patients) menstruation problems seems to be part of the problem. My philosophy is that if mainstream media magazines can have detailed articles about testicular cancer and prostate cancer, why should the topic of endometriosis be taboo? This is a serious medical condition.

Breaking these societal taboos is key to getting endometriosis facts out to a public that desperately needs information. Sadly, too many gynecologists are not highly skilled at recognizing and removing endometriosis. This leaves women shuffling from doctor to doctor in search of relief and answers.

We appreciate your ongoing help in routing our letters to the editorial staff at Meredith Corporation. I will continue asking my readers to contact you with their requests for endometriosis coverage. The 89 million women and girls with endometriosis deserve their voices to be heard.

Thank you so much for all of your support and assistance!

Best regards,


Related link:

Sunday, March 1, 2009 'Jeanne's Endo Blog': Sample Letter To The Media From "My Journey With Endometriosis"

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

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

'Jeanne's Endo Blog': Prevention Magazine Reference - Is It Endometriosis Or Is It Irritable Bowel Syndrome?

My friend Stacy, who has endometriosis, emailed me a blurb today from Prevention magazine. Be sure to read the hyperlink on endometriosis, which even talks about dioxins in food. (Just click on endometriosis and then click endometriosis again on the next screen).

Surprise Cramp Culprit -
IBS and Endometriosis: How to differentiate symptoms

While the article may be short, it's nice to see endometriosis in the media! This simple, brief article could be a helpful step to a woman reading it... to seek medical attention that gets at the true cause of her symptoms.

By clicking endometriosis hyperlinks from the article above, I found this:

Vitamins Ease Endometriosis
Could vitamins E and C be natural fertility boosters?

Here's some info on irritable bowel syndrome (IBS):

Irritable Bowel Syndrome

Thank you, Stacy, for emailing me the link.

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!!!!

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

'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,
____________

-----------------------------------------------------------------------------------

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.

'Jeanne's Endo Blog': "What Is Endometriosis Anyway?" Let's Ask Melissa Ralston Of 'Endometriosis: Facing The Battle Head-On'

What is endometriosis anyway? I'll let Melissa Ralston explain.

See her blog post about it:

Endometriosis: Have You Heard Of It?

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

'Jeanne's Endo Blog' Honors Alicia Of 'Yaya Stuff'. Hear Her Brave Story Of Endometriosis-Induced Infertility...

It is Endometriosis Awareness Month!!!

The following is a direct re-print, with permission, of a post written by Alicia (aka Yaya) of Yaya Stuff. She posted it today on her blog and I asked her if I could share it here as well. Alicia is a true friend in every sense of the word. I met her through my local endometriosis support group. I am very fortunate to have such a wise, sweet, caring friend as Alicia.

Endometriosis is one of the most common causes of infertility. Alicia knows all about this devastating combination: endometriosis and infertility. Alicia's candid writing style and open manner help many, many infertile readers on her blog and I'm honored that she has given me permission to re-print the following blog post. For more info on Alicia's journey with infertility and adoption, see her blog Yaya Stuff.

Alicia's Post:

Infertility.

Young Momma from Perfect Pen and I were emailing and she asked some questions (I encourage questions! Knowledge is power! ;) And I decided to turn my response into a blog post because there is some important information that I thought other readers could learn from it.

Below is my response email:

_________________

That's why we aren't doing infant adoption-I could not stand having a baby for a month and then having the birth mom take it back. I would lose it. Completely lose it. We're getting very excited for the mundane process to be over so that we can get our child! Right now we are looking into a 10 year old girl. The problem with any of the kids we would potentially adopt is that they will have emotional issues (rightfully so), but honestly, I think we are strong enough to handle that, and have the background to handle that. It just takes a lot of patience and persistance. Having waited 6 and a half years now for a child, we are well versed in patience and persistance. Fertility treatments....yup....not fun. I've semi-moved-on already from the bio-baby idea. I would love a bio baby. But, I'm so over all these hormones and crap making me big and fat and moody.

I've told my husband I'll do one more. One more pregnancy, whether it be successful, or another miscarriage, that's all I can handle and then I need to move on from bio-kids. It's been a rough road. It's hard having friends and family start trying for kids after us, and now have a few kids under their belt, while we still just want our first. It's hard going to parties and get togethers where conversations revolve around people's kids and we sit there in silence. It's hard seeing all these "mommy clubs" and knowing that I want nothing more then to be a part of them, but I just can't seem to be. Have you ever wanted something more than life itself? Something so much that you would literally give your arm for it? That's how I've felt for 6 and a half years. So when friends and family around us suddenly say 'We're gonna start trying for a baby!' and *boom* the next month they are pregnant, it aches. When they are able to tell everyone about their pregnancy from the very beginning and experience the joys of being pregnant, without fear that they'll lose their baby, I'm jealous. I want that. I will never experience a joyful pregnancy. It will always be filled with fear that loss is just around the corner. I can never get my hopes up.

I guess the hardest part of this road is that people just don't understand. They don't know what to say, so they say nothing. Friends and family don't know how to show support, so they ignore our pain and losses. We feel so alone in our struggle most of the time. Sure, we're happy and live a wonderful life, but there is always this part of us missing. There is this ache we have that will not go away. If you know someone with infertility or infant loss, be there for them. Let them talk about their babies. Let them talk about what they are missing out on. We can tell when you feel uncomfortable, so that's why we stop talking about it. Be unconditionally there for them. After a loss they will want distance. Don't take this personally. They need to heal.If you announce your newest pregnancy or birth, they might need distance again. We ARE happy for you, but we are also aching for what we don't have.

_______________

It's a hard job being friends and family to Infertiles, or those who have experienced Infant Loss. But we need you there. Without you there for us in the hard times and to distract us on bad days and to laugh with us on good days, we'd have no one.

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

'Jeanne's Endo Blog': Ways To Help Spread Awareness About Our Petition And Media Campaign For Endometriosis Awareness

It is March 1, 2009.

That means that it's Endometriosis Awareness Month!!!

If you have not watched my new VIDEOS, please check them out. They are located in the right sidebar. You can't miss them!

WE ARE BUSY!!! Many endometriosis bloggers are banding together to promote this awareness month!

Are you looking for a quick and easy way to support our ongoing efforts to create or increase endometriosis awareness and understanding?

Are you too tired to spend very much time doing so?

I have a couple of ideas that you might like to do to help increase awareness of endometriosis:

1) Having the petition listed here on my blog is fine but we'd reach a lot more people if the link was posted elsewhere too. If you have a blog, would you consider linking to the endometriosis awareness petition? Anyone who supports the endometriosis cause is welcome to sign it. In addition to hundreds of endometriosis patients, it already has patients' grandparents, spouses, parents, aunts, siblings, etc... in addition to patients themselves. The more names we get, the better our odds for media coverage!

Here (below) is the link that will take you to the petition. If it looks like something you'd like to post a link to on your blog, just copy the URL from that screen to use as the link. That way people will be able to access the petition right from your site!

Create Endometriosis Awareness & Understanding

2) If you're on twitter, Facebook, or any social networking site... please post information about Endometriosis Awareness Month whenever you get a chance.

On twitter, please mark any endometriosis-related tweets with this symbol at the end of the message:

#endo

This is catching on and sorts all of our endo tweets nicely!!

Also...

If you're interested in posting one of my banners on your site, please feel free.

Help yourself! There is a vertical banner and a horizontal one...

3) If you think your readers might benefit from any of the info presented on this site, please consider grabbing one of the following banner graphics and installing it on your site with a linkback to my blog. I would greatly appreciate it!

My friend Alicia (aka Yaya) honored me by posting my banners on her site and I very much appreciate it!

4) For anyone who hasn't written to Mariela Azcuy of Meredith Publishing Corp., it's not too late to do so. See previous posts for details.

This Endometriosis Awareness Month is kicking off strong with multiple endometriosis bloggers teaming up to create endometriosis awareness on all sorts of projects! It is very exciting!

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