Helping women with chronic illnesses

"Jeanne’s Endo Blog" Thanks Laurie From "A Chronic Dose" For Helping Us Increase Endometriosis Awareness!

Thank you to Laurie Edwards for helping us spread the word about endometriosis here:

Happenings from Around the Medical Blogosphere

With so many of us working together to create awareness, we really are making the most of Endometriosis Awareness Month!


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March 12, 2009   2 Comments

‘Jeanne’s Endo Blog": Thank You To Sonja Of The "Don’t Scare Easy" Blog!

Let’s hear it for Sonja of Don’t Scare Easy! She posted the endometriosis petition link on her blog.

Thank you, Sonja!!

Will you be next?

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March 12, 2009   2 Comments

"Jeanne’s Endo Blog": Endometriosis Is More Common Than AIDS & More Common Than Cancer! Harnessing The Power Of Twitter For Endometriosis Awareness..

Normally I step aside of “Mom or Mommy groups”. I’m well aware that too many endometriosis patients (or other infertility patients) are unable to become mothers and I am very sensitive to this. However, I decided to break my own rules about this for the endo cause. I saw an opportunity to join an online twitter community of over 5,000 women and realized that I’d be foolish not to join/request members’ help getting the word out about endometriosis simply because it is a club for moms. So I hope none of my readers will be offended that I’ve joined a “Mom Club”… because the thought I had in my head when joining this social networking group was that it would be a good place to network with women to HELP endo patients.

Maybe the group can help the twitter campaign we’re doing to promote endometriosis awareness? Maybe some of the members of the group might even retweet our endometriosis messages regarding blog posts, general awareness messages, or even sign our endometriosis awareness petition? Once I joined, I discovered that I could post a blog entry right from my TwitterMoms page. So that’s exactly what I just did.

In an effort to further harness the power of ever-expanding twitter, I joined this group that has 5,000+ members and posted a blog post on this social network… for the purpose of requesting members’ help with retweeting our endometriosis-related tweets. Here is an article about the TwitterMoms group: Redbook: What’s Buzzing on the Net: TwitterMoms.

My blog post on 5,000+ member TwitterMoms

Here is what I posted there:

March is Endometriosis Awareness Month!

Endometriosis affects 89 million women and girls worldwide.

Endometriosis is more common than AIDS and more common than cancer, per the Ohio State University Medical Center!

Source for above statement:

Ohio State University Medical Center

Twitter page: @jeanneendo

Sign here:

Endometriosis Awareness Petition

We currently have an aggressive twitter campaign to tweet endometriosis-related messages with a special hashtag at the end of the messages:


The #endo hashtag is now in the hashdictionary and it is being used daily by many twitter users.

Won’t you join us in supporting endometriosis awareness by simply retweeting #endo tweets??

By the way, anyone who’d like to post the endo awareness petition link is welcome to do so!! Help yourself (link above)… By simply posting this link, you can help with endometriosis awareness in just a few moments’ time!

In the end, I think I made the right decision to join this group because I am now doing further networking for the endo cause. I even found a very nice news writer in the group and exchanged messages with her regarding endometriosis in the media!

Let’s do whatever we can to get accurate information to the public. Inaccurate articles cannot stand unchallenged. We can’t allow myths about endometriosis to keep being spread. We need to keep speaking up about the facts regarding endometriosis.

Right now, sadly, the facts are not always pretty. We’re dealing with an illness that is more common than AIDS and more common than cancer. It affects 89 million women and girls. There is a massive delay from onset of symptoms to diagnosis for most patients (an average of 9.9 years of delay). Even doctors have been known to describe it is “poorly understood” and “mysterious”.

There is good news too! There is hope…

Awareness IS increasing (even in just the last few days that buzz is in the air), media reports are getting corrected, patients are speaking up more, research is being done (even if it’s not as much as we’d like), girls are getting diagnosed younger… So the news is not all bad and we all have the power to do our small part to make things better for ourselves, each other, those who have endo but are not yet diagnosed, and future endometriosis patients.

In mid-March, CureTogether will release its book “Endometriosis Heroes”. Now when is the last time you heard a new endometriosis book was being released? Pretty cool, huh?


P.S. Today is Friday… Twitter users, please don’t forget to participate in Follow Friday! Simply send a tweet with the twitter addresses of those you recommend following. I sent several #followfriday tweets out this morning. Here’s an example of one I sent…

I take that back! Wow! I just did a search on #followfriday tweets and after going back FIFTY screens I only got back to 24 minutes ago! I did my #followfriday tweets about 30 minutes ago and I’m too tired to keep searching! So if you have any questions about how to do #followfriday tweets, please just let me know. Can you imagine there are 50 screens full of tweets for #followfriday in just 24 minutes!!! That’s how big it is. I have had people find my blog after seeing it on #followfriday so I think we should take advantage of it.

By all accounts,
is a HUGE trend on twitter right now, generating lots of traffic. Let’s use it for endometriosis awareness! Plug your favorite endo bloggers. Plug a favorite endometriosis-related post. Send tweets to direct twitter users to endo info they might not see otherwise. Twitter has millions of users. Let’s get their attention!

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March 6, 2009   2 Comments

‘Jeanne’s Endo Blog’: Endochick’s Campaign To Get Julia Roy To Feature #endo On TweetWeek

The beginning portion of this blog post is reprinted with permission from Endochick

Are you on Twitter?

Have you heard of Julia Roy???

If you aren’t following @juliaroy on Twitter, here’s why you should be…

Endochick recently informed me that Julia Roy hosts a show called TweetWeek.

1) She is the host of the YouTube show Tweetweek. The February 18th Tweetweek has had 2,501 viewers. With her Tweetweeks, she goes through the popular hash tags and events covered on Twitter during the week.

2) She is the self-proclaimed “an entirely digital girl.”

3) She has, as of the writing of this post, 17,378 followers! This is a staggering number!

4) To raise money for Twestival’s Charity: Water, Julia Roy auctioned off an evening of drinks and dinner with herself. The final bid was $1,549.00!!!

5) If we can all follow her this month on Twitter, and then DM (direct message) her and politely ask her to cover the #endo hash tag for National Endometriosis Awareness Month, we may see this happen.

The more we use that #endo, the more popularity it’s going to gain this month! Keep encouraging other women you know to use it! The more awareness we can bring to this disease the better!

Here is the comment I posted to Endochick’s post:


Thank you so much for finding Julia Roy! As we discussed the other day, we should direct message her with requests to cover #endo on her show. The #endo twitter hashtag is really catching on and is now listed in the hashdictionary, thanks to Debby Bruck of Holistic Twitter.

If we spread the word to our endo sisters and enough people send messages to Julia Roy, we can make this happen. We have to get as many people as possible to message her, though, because she has LOTS of followers!

So we need to get the word out to other endo bloggers and endo patients AND ANYONE who supports the endo cause! Getting #endo featured on Julia Roy’s show could really be huge for increasing awareness. With all of these coordinated efforts, something is going to pay off! We all just need to be determined and persistent!

THANK YOU! Now let’s spread the word… email, Facebook, other endo blogs (comments), etc. We need help! We need more people messaging her. You and I have already sent her tweet messages… and we can do so again. However, we need others to join us.

In addition to following and direct messaging Julia Roy, there is another powerful twitter tool we need to be using:


According to Mr. Tweet, #followfriday is the biggest trend, by far, with twitter hashtags at this time.

Here’s the kicker. Few people seem to be following the “rules” and using #followfriday just on Fridays! In fact, since I installed TweetDeck, I see #followfriday tweets popping in all day, every day. Today, I saw a tweet where the woman (SerendipityJane) came out and acknowledged that she was purposely not following the Friday “rule”. So, I’m figuring, why should we be the one ones following the “rules” and waiting until Friday?

So I just sent this tweet and I’ll post it here as an example:

@SerendipityJane Jane inspired me to break rules. Here’s who I’d love ppl to follow: @endochick @momtojake @jeanneendo #endo #followfriday

@endochick is Endochick

@momtojake is Melissa Ralston

So if you have twitter, doing Follow Friday is very easy. Simply write a tweet listing the people you want others to follow. (The people you listed need to be on twitter and you listed them by their twitter name, as I did above). That’s it. That will direct traffic to those bloggers. Think of it like a “referral”.

OK. Let’s get twittering! Don’t forget to mark endometriosis-related tweets with #endo!



I just posted this comment on Endochick’s blog post about Julia Roy:


I just emailed Julia Roy and copied you on it!

Her email address is:

Her blog is:

I just posted a comment on her last Tweet Week post! There was no comment moderation… it posted immediately. So even if she doesn’t mention #endo on her next Tweet Week, we may get some decent visibility simply from readers of her blog looking at the comments!

Here was my email to Julia Roy:

Dear Julia,

I am one of the 89 million women and girls affected by endometriosis.

Endometriosis is more common than AIDS and cancer!!

(Source: Ohio State University Medical Center)

In late February, I posted my 2nd video. In it, I asked people to use this hashtag for all endometriosis-related tweets:


It has really caught on and many people are using it now.

March is Endometriosis Awareness Month. My fellow endo bloggers/patients and I desperately want to increase awareness about this serious illness!!

My endo started at age 13. Currently I’m 40. So I’ve been living with endometriosis for 27 years.

My friend and fellow blogger Endochick, of Endometriosis: The Silent Life Sentence was the one who told me about your show.

We would be ecstatic if you could feature this:


…on your Tweet Week show!

Endometriosis Awareness Petition

We have hundreds of signatures… many with heartbreaking comments…

Thank you SO much for considering featuring #endo on your show. Endometriosis affects SO many but does NOT receive the attention it needs and deserves! So many women and girls are suffering in silence.

Please help us educate the public and connect women to their fellow patients!

This is one of the messages we’ve been tweeting quite a bit: “MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!”

We appreciate your help!


Finally, here is what I posted on Julia Roy’s blog about our wish to have #endo featured on her Tweet Week:

Blog comment response to Tweet Week – Episode 13

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March 4, 2009   No Comments

‘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”


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March 4, 2009   2 Comments

‘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

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 &a
mp; 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

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March 1, 2009   2 Comments

‘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

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March 1, 2009   2 Comments

‘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:


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


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

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February 28, 2009   2 Comments

‘Jeanne’s Endo Blog’: March is National Endometriosis Awareness Month

I saw this link thanks to Sandy Robinson listing it on the Fighting Fatigue blog.

It’s so great to see endometriosis awareness increasing!!! This link gives the history on when National Endometriosis Awareness Month officially started being observed.

March is National Endometriosis Awareness Month
Endometriosis is a chronic condition that affects over 5.5 million women in the United States and Canada.

March is National Endometriosis Awareness Month

If you pull up the above link, you’ll see that you can comment to it (as I did there) and you can “share” it (as I just did by posting the link above on Facebook).

Let’s all work together to increase endometriosis awareness. Reading the link above, commenting, and linking it to Facebook probably took me all of 3 minutes total. Won’t you join me in sharing this link?

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February 27, 2009   19 Comments

"Jeanne’s Endo Blog" Thanks Melissa Ralston Of "Endometriosis: Facing The Battle Head-On"…

Thank you to Melissa Ralston for the shout-out about my endometriosis awareness petition and our efforts to attract media attention to the importance of getting endometriosis FACTS out to the public.

Here’s her post:

Raising Awareness: Media Campaign for Endometriosis Awareness Month (March)

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February 27, 2009   4 Comments