"Jeanne's Endo Blog": Endometriosis Associated With Periodontal Disease?

Wow! Check out this fascinating link regarding a new study that may provide clues regarding endometriosis and the immune system!

Endometriosis associated with periodontal disease

I found this article posted on twitter by:

libbyshope (Paul Cacciatore, Founder of Libby's H*O*P*E*: *Helping *Ovarian Cancer Survivors *Persevere Through *Education)

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

"Jeanne's Endo Blog" Thanks Twitter Guru 'steveweber' For Helping Us Promote Endometriosis Awareness!

I spent some time today catching up on twitter. I highly recommend TweetDeck, by the way. It's so much easier to manage tweets with it.

As I was getting caught up on twitter, I was messaging various people I encountered, asking them to sign our endometriosis petition.

It occurred to me that I hadn't asked steveweber to support our cause. For those of you who aren't familiar with him, he is what I call a "twitter guru". Check out his twitter page and you see 21,175! When I first installed TweetDeck, he was very helpful!

Thank you to steveweber for retweeting #endo messages!!

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

"Jeanne's Endo Blog" Thanks "Yaya Stuff" And "My Journey With Endometriosis"

Thank you to My journey with Endometriosis for posting the endometriosis awareness petition!!

Also, a belated but very heartfelt thank you to Alicia of Yaya Stuff for starting the petition-link-posting trend!

Will you be next to post it?

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

"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!

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": 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?

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

'Jeanne's Endo Blog': Let's Have One More Hand For Sandy Of Fighting Fatigue & IC Disease!

Is it my birthday?

You may have seen a couple of posts ago that Sandy of Fighting Fatigue kindly wrote an entire blog post promoting our:

Endometriosis Awareness Petition

Well, Sandy has also posted the endometriosis petition on her other blog:

IC Disease

I am a long time follower of Sandy's fantastic blogs. Having fibromyalgia and interstitial cystitis myself, I found her blogs early in my blogging days and promply added them both to my blogroll. Pssst! Go check out Sandy's great blogs!

I deeply appreciate Sandy's help in promoting the endometriosis petition on both of her blogs.

Oh, and did I mention that she's even plugging the petition on Facebook?

Thank you, Sandy!!!!

Related link:

Tuesday, March 10, 2009 'Jeanne's Endo Blog': Sandy From Fighting Fatigue Has The Endometriosis Awareness Month Spirit!!

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

'Jeanne's Endo Blog': Sandy From Fighting Fatigue Has The Endometriosis Awareness Month Spirit!!

Here is a huge THANK YOU to Sandy at Fighting Fatigue!!

Check out her post!

Sign Petition to Raise Awareness During National Endometriosis Awareness Month

It would warm my heart if we can get the petition posted like this on other blogs!! Please consider doing so to increase endometriosis awareness!

Now, if you're reading this post and you have not yet read my previous post,
Monday, March 9, 2009 (VIDEO) 'Jeanne's Endo Blog': Vlog #3 Endometriosis Awareness Month (Week One Recap) & Acupuncture Intro Video, please go check it out.

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

"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:

#endo

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?

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS

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, #followfriday 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!

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

'Jeanne's Endo Blog': Jeanne's Endometriosis Story For CureTogether's "Endometriosis Heroes" Book, Expected To Be Released Mid-March...

Yesterday you read Stacy's endometriosis story. It was a sneak peek at CureTogether's upcoming book "Endometriosis Heroes", scheduled to be released in Mid-March!

I have one more sneak preview of that same book. It is my endometriosis story and will also be included in the CureTogether book "Endometriosis Heroes".



This story isn't the easiest one I've ever written but I chose to write about it because I know many young girls out there are suffering! I'm hoping that sharing my story may help someone. With endometriosis, early diagnosis is important. This isn't a story you'd find in a medical textbook or medical journal. It's not a story a doctor would "forewarn" you about. It is, however, a true story. I've spoken with enough endo patients to know that similar things happen to others. While I was embarrassed at the time this story occurred, I now know that I have nothing to be embarrassed of! This is just one of the many ways endometriosis has affected me over the years. I went from age 13 to age 23 undiagnosed. This is a common time lag for endo diagnosis. There should NOT be such a lag! Endometriosis awareness matters!!

Here is my story...

My 7th grade field trip as an endometriosis patient:

It was the day we had been waiting for. It was the day for our end-of-year 7th grade class field trip to an amusement park! After months of studying hard and doing mountains of homework, this field trip was our reward. We’d been looking forward to it for months. I woke up excited and happy that the day had finally arrived. Instead of going to school all day, I was going to go on rides with my friends. We took the bus to the amusement park and were escorted to the picnic tables where we were to meet for lunch at a specified time.

Then we were free! My friends and I went on some rides and had lots of fun. Then… it happened! I felt something was wrong. No! It couldn’t be that. I just finished my period (an 11-day-long one) three days BEFORE the field trip. There was no way I could have my period AGAIN, right? WRONG!

I rushed to the nearest rest room to check the damage. Surely the most it could be was spotting… I hoped. As I navigated through the busy amusement park, I felt a sense of doom come over me. I could feel that this was not spotting. I picked up the pace for getting to the rest room. This increase in speed only made the flow heavier, of course. There was no way I could be spotted by all of my 7th grade classmates this way, though. I walked/ran to the rest room as quickly as possible.

Despite the large number of stalls, there was a line because they were all in use. By this point, I was frantic. My 2 friends had zigzagged through the park after me. They exchanged glances when they saw the line (as I had already explained to them what the emergency was). I scurried into the first available stall. I felt nauseated at what I discovered. Physically, I was nauseated (as often was the case with my periods). This was an additional level of nausea… at the realization that my worst fear had just been confirmed.

The blood had saturated my underwear and seeped through onto my shorts… which were now soaked as well. I just cried and cried. My friends were on the other side of the stall door… asking me if I was OK. I was very much NOT at all OK. I was dumbfounded. What was I going to do? I didn’t have any spare clothes or underwear and I was stranded in a public rest room of the amusement park I was supposed to be having fun at. I was very much NOT having fun. This was a nightmare!

Fortunately for me, I had my two friends with me! I don’t know what I would have done without them. They saved the day by helping me deal with the most embarrassing, upsetting, stressful thing that I imagine could have happened to me… on what was supposed to be a day of fun! They could have bailed on me and hit the rides but they knew I was in distress and they were ready and willing to help… even if it was not going to be fun.

I was in the stall, in shock, not knowing what to do. My friend since 4th grade (we are still friends today 30 years after we met in class in 4th grade) offered to help first. She suggested I hand her my shorts under the door so she could wash them out in the sink. Now that is a true friend!! I was dying of embarrassment but didn’t feel I had any other options. So I slipped her my shorts under the door. She proceeded to wash them as thoroughly as one possibly can in a public rest room sink. She passed them off to my 2nd friend who blow dried them with the hand dryer. Next she asked me to pass my underwear out. Under the door it went. I was sobbing pretty heavily by now. She washed and washed and then that too got the hand dryer treatment. They weren’t perfect… but the obvious stains were washed out and they were dried and ready for me to get dressed again. I just kept crying. This was a pretty traumatic event for a 7th grade girl.

Once my dry clothes were passed back to me, I got dressed and tried to regain my composure. I had no pads with me and would need to figure out which of my classmates I might be able to bum pads off of. The thought of needing to locate a “pad supplier” was adding to my nausea. I wanted to click my heels and go home. I wanted to take a hot bath and put some clean, soft pajamas on. Instead, I needed to get through this field trip.

This day was downright traumatic for me. I blocked the memory of it out as best I could because it was so upsetting. However, I’ll never forget it. Dealing with chronic illness is tough on adults. Dealing with it is even harder for children. What 7th grader is prepared for what I described above? What adult would be?

Endometriosis is a serious illness. While misunderstood and mischaracterized by the media oftentimes, people tend to have some understanding that symptoms like pain and infertility can be associated with endo. The story I just told isn’t one you’d read in a medical textbook. It’s not one you’d probably hear many places at all. There are many stories I could have picked in place of this but I chose this story because it’s a symbol for what my early years with endometriosis were like. It’s emblematic. I could have replaced this story with any number of others. The main point is that endometriosis is a SERIOUS illness that affects women and girls in a multitude of ways. The profound impact endometriosis has on patients and their loved ones cannot and should not ever be underestimated!

Please sign: Endometriosis awareness petition

Send tweets like this on twitter, please:

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!

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': "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.

"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)

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

"Jeanne's Endo Blog": Endometriosis Awareness (Vlog Post 2)

Our campaign is making progress! If you have not seen the related posts preceding this from 2/16/2009, 2/20/2009, and 2/23/2009... please see links at the end of this post so this one will make more sense.

Welcome to my second vlog!

THANK YOU you for the warm welcome on the first one... the most comments I've ever had to one blog post!

The video clip below will update you on our endometriosis awareness campaign status: our awareness petition, our letter-writing campaign, our variety of efforts to seek media attention regarding endometriosis facts, and our preparation for Endometriosis Awareness Month.



Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.

In preparation for Endometriosis Awareness Month... I am asking endometriosis patients, bloggers, and anyone else interested in the endo cause to please contact Donna Jackson Nakazawa (contact info for her blog address is in link below).

Also, would all twitter users please include this symbol at the end of all endometriosis-related tweets?

#endo

You may have noticed other bloggers using similar hashtags...

Such as "The Spoon Lady" from:

But You Don't Look Sick?, written by Christine Miserandino.

Christine uses the symbol: #spoonie

By using #endo, we will be able to search twitter for endo-related tweets. So will anyone who uses twitter and makes use of it's search function.

Granted, with a 140-character limit per tweet, sometimes it may be a bit challenging to fit the extra 5 characters. However, this will code enable us to sort/search for the tweet messages we need more quickly & effectively and it will catch the attention of others to the endo cause.

If you haven't already done so, please comment on Donna Jackson Nakasawa's blog (see link below for her blog and info about contacting her! :)

Related links:

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!

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

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": *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

This post is a follow-up to:

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!

If you haven't yet read the above post, I encourage you to do so.

Following that post, Endochick and I discussed how we can capitalize on the momentum we have going to get people writing letters for endometriosis awareness. I asked Endochick if I could reprint her amazing letter to Mariela Azcuy (see Ms. Azcuy's contact info later in this post):

Endochick graciously agreed to let me print her letter to Ms. Azcuy. Whether this letter was written to Ms. Azcuy or to anyone with media contacts, we believe that posting sample letters such as this will inspire others to write their own letters regarding their personal journeys with endo!

March is Endometriosis Awareness Month. We're ramping up now to, hopefully, make a big splash next month regarding endometriosis awareness!

I urge you to read Endochick's post from today:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

Her post about this topic on her blog gives much helpful detail!! So please go check it out!!

Now, it is my pleasure to present Endochick's letter. Again, I urge you check out Endochick's entire post about the topic of letter-writing to create endo awareness... especially with Endometriosis Awareness Month around the corner in March!!

As promised, here is the example of Endochick's letter to Mariela Azcuy. Please remember that her work on her blog is copyrighted and that the following letter is therefore under copyright protection (as is my writing on this blog).

Endochick says,

"You may use this example as a reference, and I hope it inspires you".

Endochick

Here's Endochick's "Sample Letter":

---

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

Dear Ms. Azcuy:

I am writing on behalf of the 89 million women and young ladies who suffer daily from endometriosis. In North America it’s estimated that this number is 5.5 million strong and growing every year. Many of these women go undiagnosed for years and then once diagnosed are either under or improperly treated. And even worse, Ms. Azcuy, endometriosis sufferers are marked with a stigmata that haunts them, often before they are even officially diagnosed with the condition. Society views many of us as drug seekers, doctors withhold needed medication, and our co-workers and bosses see us as attention seekers.

But let me first commend your corporation for its in-depth coverage on chronic illnesses. While these illnesses do warrant a need for more press time, one chronic and often time debilitating illness is not getting it’s due coverage in the media – endometriosis. This past fall, television viewers received a mediocre education on endometriosis via the coverage given to Dancing with the Stars’ Julianne Hough and Lacey Schwimmer’s diagnoses’.

The coverage by the media glossed over one vital fact in how endometriosis is diagnosed: the only definitive way to diagnose endometriosis is to perform a laparoscopy. According to the Endometriosis Association, “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient makes better treatment choices.” The Endometriosis Research Center agrees: “Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive.”

The scary fact is that there are doctors diagnosing patients not with “probable endometriosis” but with “definite endometriosis” based on nothing more than their symptoms. The diagnosis from one to the other allows the doctor to prescribe a whole host of potent medications; medications that should be reserved for women with confirmed endometriosis that doesn’t respond to lesser hormonal preparations. Yet, I have personally seen this happen with two women who have contacted me via my blog. They hadn’t even had a laparoscopy, so their doctors can’t even be sure they in fact do have endometriosis! It was believed that my own sister had endometriosis until a laparoscopy found her pelvis free of the disease. A pap smear, on the other hand, found the cause of her excessive bleeding: cervical cancer.

There are too many conditions that can mimic endometriosis - diverticulitis, infection, ovarian cysts, pelvic inflammatory disease, irritable bowel disease, STD’s, vaginitis, and even ectopic pregnancy. Would it be ethical to give anti-cancer drugs without first doing an MRI or a CT scan to look for a tumor? Yet, there are doctors subjecting women to the effects of menopause, severe migraines, moments of rage, and a decreased sex drive when an outpatient, surgical procedure can determine whether there is even a need for the medication!

As I hope you can see there is an urgent need for appropriate, in-depth media coverage on endometriosis. My fellow endometriosis and chronic health bloggers congratulate your corporation on the wonderful coverage you’ve given to the chronic illness community, now we implore that you do the same for the endometriosis community. Please help me and my fellow endometriosis bloggers to help the 89 million women and young ladies feel that the pain they feel is not in their minds, and that they are not alone. Help us to give endometriosis the voice it deserves in the media.

Sincerely,

Endochick (Put your real name)

Blog: Endometriosis: The Silent Life Sentence

------

My hope and intention in the coming weeks is to post more sample letters to inspire YOU to write your stories to get the facts about endometriosis into the media once and for all.

Please keep those letters rolling into Ms. Azcuy and I'd really appreciate if you can copy me on them if at all possible!! If you copy me on your letter to the press (Ms. Azcuy or otherwise), please indicate whether you'd be comfortable with me posting your letter as a sample to inspire others to write in to support accurate media coverage of endo!

The response to the vlog/blog post has been fantastic. Please keep those letters and petition signatures rolling in. :)

Thank you!

This post is cross-posted with Endochick's post:

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

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

"Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???

Today I received an email from my friend Alicia (aka Yaya) of:

Yaya Stuff

Here's what Alicia's email to me said:

One of my infertile blogger buddies just posted that she has a laparoscopy coming up:

Confessions from an Impulsive Addict

Thought we should keep her on our radar since this is her first one.

Alicia

After reading Alicia's note, I stopped over to the blog she had mentioned.

By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!

Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!

So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).

Here is the comment I posted on the blog:

Confessions from an Impulsive Addict


Impulsive Addict,

Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".

I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.

I TOTALLY understand your fears and anxiety about having surgery.

Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!

Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net

Here's my surgery history:

1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.

1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!

1994: 3rd lap... more endo removed

1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed

2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)

2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!

2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.

I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.

So, if you have questions about laparoscopy, I'm here to help!

Here are some of the "tips" I suggest to women having a laparoscopy:

1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.

2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.

3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.

However, here is a heads up.

In my personal opinion, doctors minimize the recovery time most women need after a lap.

I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!

I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.

I started my blog last June and have heard many more women's stories.

Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.

Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.

Anesthesia has improved immensely over the years. My last couple of laps were much, much better.

So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.

The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).

The small naval incision is a given. The question is how many other incisions the doc chooses to make.

Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).

If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.

Doctors can't always tell endo just by looking at it.

Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.

You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).

Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.

You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.

That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!

The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).

Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.

Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.

If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.

4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.

It helps to plan ahead for whatever help you may need.

Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.

Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!

REST, REST, REST

5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.

If it's not endo, the laparoscopy will enable them to look around for other issues.

So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!

6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.

That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".

I can provide you lots more info offline if you like.

I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.

Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.

I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)

I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.

Having had 6 of them, I've learned a few things along the way. :)

I know it's scary and I know the wording on those forms can be freaky.

What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!

You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.

For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.

That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.

That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.

I'm sorry to get all serious on you. It's not all doom and gloom!

They might find endo, remove it, and help you somehow (pain relief? fertility?)

I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!

I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.

I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.

Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!

So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.

I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.

I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.

I'm exhausted and in pain and on my last little bit of energy right now.

I hope something in here is helpful!!

Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.

I'm sending positive energy your way and wishing you a smooth surgery and recovery.

Remember... after the surgery:

REST, REST, REST :)

Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!

Have a wonderful night! :)

{{Hugs}}

I'm around if you need me!!!

Jeanne

February 20, 2009 5:54 PM

Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.

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

Alicia's Adoption Adventure Raffle Ticket Giveaway # 1!

For a long, long time now I have been trying desperately to figure out how to help my friend Alicia in her quest to become a Mommy. Here is my chance to finally DO something to help her!!

Would you like a chance to win a $40 gift card to Target while helping my dear friend Alicia raise money for her adoption fund????

First, here is some background... I met Alicia through my local endometriosis support group. She is one of the sweetest people I know! She works as a nanny. That means she sees beautiful children all day while she dreams of having her own. Just try for a moment to imagine that!

See Alicia, Josh, and their beloved pets!

Alicia is an endometriosis patient who has had years of infertility. She has had multiple miscarriages as well. She is currently undergoing hormone treatment to try to get pregnant. She and her husband are also pursuing a foster-to-adopt method of adoption.

For months and months, I have wracked my brain trying desperately to figure out a way to help my friend! Offering words of comfort can only go so far. They don't change the fact that these two wonderful people and their pets would love to have some children with whom to share their love!

Alicia's friend Ashley had the brilliant idea to create an adoption fund. Apparently, adoption costs can range from $8,000 to $100,000. (See Alicia's blog for more information).

Finally, I have something I can DO to help my friend who has been through so much!

So, sadly, adoption is very expensive! Alicia and her husband desperately want to be parents and have so much love to give!!! To read more about Alicia's story, click below. (This will also tell you more about the Adoption Adventure Raffle Ticket Giveaway)...

Let's fill this house!!



I never do raffles. So bear with me because this is a special exception for my friend who I have been trying desperately to comfort/help in some way... I finally have a chance to DO something to help her become a mom!!

Alicia's Adoption Adventure Raffle Ticket Giveaway # 1!

Rather than just ask you to link to her site and check it out, I want to take it a step further and post her Adoption Giveaway here too. Whatever will give her raffle more visibility!

I should mention that I have never done a raffle like this before and very likely will not do so again. I am doing this for my personal (in-person, not just online) friend. (Hint hint... I would really appreciate if no one asks me to post their cause because I have no plans to do this for others)!! I am doing this to help a friend. If I ever do a raffle again, it will my something I initiate. So PLEASE do not submit any causes to me. I won't be posting them.

Per the instructions on her site, here is how you enter for the raffle for the $40 gift card to Target (plus some other surprises)...

Alicia's instructions say:

To enter you click below and donate $5. For every $5 you will receive one raffle ticket with your name on it put into the "hat". You will need a paypal account for this. If you don't have a paypal account you can email me (yayaorangenanny@yahoo.com) to find out about mailing check or cash.



For those who missed my recent post about Alicia, here is a reprint of that post. It will help you get to know Alicia a bit. She is helping so many infertile patients and has become quite an advocate!

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

Here is the reprint of the previous post. I'm reposting her picture in the reprint and this story of her new Mommy Wannabe Club to remind you that we are talking about a real person here who has done so much to help other infertile patients!!

Some of you may know her by her nickname ("Yaya"). I first met Alicia through my local endometriosis (in person) support group. She is a fellow blogger and a strong, inspirational woman who works intently at advocating for patients with a history of infertility and miscarriages/pregnancy loss.

Alicia's passion, drive, determination, caring, humor, and compassion have attracted a flock of readers to her blog. She is helping great numbers of people. It is an honor to call Alicia my friend, to learn from her, to watch her advocacy efforts blossom, and to witness the multitude of ways she is helping others!

She is also becoming a great source of information on adoption and the foster-to-adopt process. Her blog covers all of these issues and much more.

Here is a brief biographical sketch about Alicia from her blog profile:

"Read along in my quest to become a Mommy, one way or another. It's been 6 years and several miscarriages, but I'm not giving up!"

My friend Alicia of the blog Yayastuff has launched a new venture!


Visit Mommy Wannabe Club


She has started a social network called the Mommy Wannabe Club.

Here is her blog post about it:

Wednesday, December 31, 2008 Mommy Wannabe Club

Alicia asked me if I would help her get the word out about her new club. I am honored to assist her efforts in any way I can!


View my page on Mommy Wannabe Club

Perhaps some of you reading this may be interested in joining?

Thank you Alicia for everything you do!!!

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

Endometriosis Blog: Media Syndicate's Article On Endometriosis

Here is an endometriosis article just published today on Media Syndicate. It was also listed on a Google alert email for endometriosis:

Media Syndicate's article:
"Endometriosis Patients Demand Awareness, Research, and Better Treatments: Sufferers Share What Works and What Does Not"

The article was written by Faren Inglett of CureTogether.

Cure Together

Please see the endometriosis awareness and education petition that I will submit to Oprah and The View later this week:

Create Awareness & Understanding Of Endometriosis

This petition may be signed by ANYONE interested in furthering the endometriosis cause. So please spread the word!

Related posts:

Monday, November 3, 2008 Endometriosis Blog: "Dancing With The Stars" Endometriosis Blog Posts (Update) -- Tracylynn's Comments!!!

Friday, October 31, 2008 Endometriosis Blog: PLEASE Sign Petition To "Create Endometriosis Awareness & Understanding"!!! ***(Please read... THIS POST HAS BEEN UPDATED!!!!)***

Friday, October 31, 2008 Endometriosis Blog: 'Jeanne's Endo Blog' Featured On: "Cision's Media Updates - Medical & Health" (UPDATED)

Thursday, October 30, 2008 Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too **(UPDATED)**

Friday, October 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy ***(UPDATED)**

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