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

UPDATED on 11/2/08 at 8:49 pm:
So far, we have gotten online petition signatures from different parts of the 50 states, from the UK, from South Africa, and from Puerto Rico!! Let's keep adding to that petition!! It only takes about 2 minutes. Do it for someone you love!!

(UPDATED 11/2/08 AT 2:15 EST):

WE ARE GETTING A GREAT RESPONSE ON THE PETITION FOR ENDOMETRIOSIS AWARENESS & EDUCATION! SO FAR, WE HAVE PEOPLE FROM THE U.S., THE UK, AND SOUTH AFRICA ON THE PETITION. WE NEED MORE SIGNATURES, THOUGH! THE MORE SIGNATURES WE GET THE BETTER OUR CHANCES FOR GETTING QUALITY INFORMATION ABOUT ENDOMETRIOSIS DISSEMINATED IN THE MASS MEDIA.

THE ONLINE PETITION IS FAST & EASY. IT EVEN HAS A FIELD WHERE YOU CAN ADD A COMMENT ABOUT HOW ENDO HAS HAS AFFECTED YOU OR YOUR LOVED ONES. ANYONE CAN SIGN! SO GET YOUR HUSBANDS, FRIENDS, BOYFRIENDS, COUSINS, ETC. TO TAKE JUST 2 MINUTES TO SIGN THIS PETITION. HOPEFULLY IF WE CAN GET A GOOD SIZED PETITION TOGETHER AND SUBMITTED TO OPRAH & TO THE VIEW BY THE END OF THE WEEK, WE CAN GET DECENT ENDO COVERAGE IN THE MEDIA TO COUNTERACT LAST WEEK'S MISINFORMATION.

THIS ILLNESS AFFECTS ABOUT *89 MILLION* WOMEN AND GIRLS AROUND THE WORLD! YET MOST OF THE PUBLIC HAD NEVER EVEN HEARD OF IT (UNTIL LAST WEEK WHEN THE CONFUSING PRESS RELEASES CAME OUT FROM THE 'DANCING WITH THE STARS' CONTESTANTS BEING DIAGNOSED WITH ENDOMETRIOSIS). LET'S GIVE ENDOMETRIOSIS AS AN ILLNESS AND ENDOMETRIOSIS PATIENTS THEMSELVES THE RESPECT THEY DESERVE BY GETTING ACCURATE INFORMATION OUT TO THE PUBLIC!!!

JUST CLICK HEAR TO TAKE ABOUT 2 MINUTES OUT OF YOUR DAY TO SIGN A PETITION CREATING ENDOMETRIOSIS AWARENESS & UNDERSTANDING!

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INITIAL POST:

Please sign the petition below. The goal is to lobby the Oprah show or The View in an effort to increase endometriosis awareness and understanding by having a story aired about endometriosis.

With Julianne Hough and Lacey Schwimmer both announcing they have been diagnosed with endometriosis this week, NOW is the time to ask the national media to focus on this illness that affects an estimated 5.5 million women in North America and 89 million worldwide.

Endometriosis potentially affects careers, education, relationships, fertility, quality of life, pain level, and much more.

It's important for the public to have a basic understanding of an illness that affects so many... often profoundly.

Please just click below to view & sign the petition.

Create Endometriosis Awareness & Understanding

Let's get the word out to as many people as possible! You do NOT have to be an endometriosis patient to sign this petition. If you have a friend, aquaintance, or loved one with endometriosis... please sign this petition so that we can educate the public about this potentially devastating illness.

For more information, please see recent posts:

Tuesday, October 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy

Thursday, October 30, 2008 Endometriosis Blog: Dancing With The Stars' Lacey Schwimmer Reports She Has Been Diagnosed With Endometriosis Too
Thank you for your support!

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

Take Our Daughters To The Polls!

I have been trying really hard not to get "political" on my blog because it could quickly turn from a health blog to a political blog.

There is nothing at all wrong with a political blog. However, I try to stay focused on the health issues I write about.

In light of the fact that Election Day is right around the corner and because some readers here do have daughters, I decided I'd post this clip to encourage readers to take their daughters (or maybe take a relative like a niece) with them when they vote. By setting an example for young girls, the adults in their lives can demonstrate the importance of everyone's voices being heard.

With healthcare being a very important issue this election year and with chronically ill patients being so severely impacted by the problems with the healthcare system in the U.S. at this time, voting is more important than ever this election.

So, let's get out the vote AND let's teach our younger loved ones how important it is to vote!

Women didn't always have the right to vote in this country. It's important for young girls today to be informed about women's suffrage and to understand how hard women AND men fought for women to have the right to vote in this country.

I had the privilege of visiting the National Women's Hall of Fame in Seneca Falls, NY several months ago. I learned quite a bit about women's suffrage by visiting the Hall of Fame. It is important not to take our right to vote for granted!



Thank you to Tracee Sioux for sharing yet another great video clip with me.

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

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

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UPDATED POST (at 9:19 am on Friday, October 31, 2008)

I have started a petition called:

Create Endometriosis Awareness & Understanding.

If you click the previous link, you will be routed directly to the online petition. I urge you to sign it!

The goal is to get a show like Oprah or The View to feature a story on endometriosis that explains ACCURATELY how endo is diagnosed, what amount of recovery time is needed, etc.

Please see my post about the petition I created last night:

Friday, October 31, 2008 Endometriosis Blog: Please Sign Petition To "Create Endometriosis Awareness & Understanding"!!!
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Tonight I opened my email and there was a Google alert email on the topic of endometriosis. I get these endometriosis alerts regularly.

I opened the email and found no less than 10 links about endometriosis!! (Generally these endometriosis alerts contain 1-5 links per email). Every single one of the 10 links was about Lacey Schwimmer reporting that she has been diagnosed with endometriosis and/or info about Julianne Hough's endometriosis/surgery.

See my previous post regarding Julianne Hough's announcement that she has been diagnosed with endometriosis.

TUESDAY, OCTOBER 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy

Here is one of the links from the Google alert on endometriosis:

TransWorldNews

I am puzzled.

I read through each of the links with reports of Lacey Schwimmer's announcement that she has been diagnosed with endometriosis.

Lacey Schwimmer was quoted in these reports as saying (press releases dated today), "A few days ago, I started feeling very shaky, very weak, and I had awful cramps... I didn’t really know what was going on. I went to go get checked out today and I actually have the beginning onset of what Julianne has,” Schwimmer told The Insider. “It hurts very bad. Right now I’m insanely weak, and the room is spinning.” She went on to say, “I have medication that is taking care of it. We caught it at a very good time” and that she "will not require surgery".

Here is why I am puzzled... The media reports are saying that she was diagnosed by the same doctor that Julianne Hough was diagnosed by. I am puzzled because she, like Julianne Hough, was diagnosed by her doctor as having endometriosis despite the fact that she had not had a laparoscopy to diagnose the condition.

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 make better treatment choices".

According to The Endometriosis Research Center "endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive".

So my confusion is how both of these women from Dancing With The Stars have been diagnosed with endometriosis prior to having had surgery or without having had surgery???

Those familiar with endometriosis are well aware that it is diagnosed via an outpatient surgical procedure called laparoscopy. I don't understand how the doctor who has diagnosed each of these women is making these diagnoses without the benefit of laparoscopic surgery.

While I understand from news reports that Julianne Hough has a sister and mother who have endometriosis and while endometriosis can be a genetic illness (it runs in my family too), a diagnosis of endometriosis cannot be made based on family history alone.

I understand from news reports that Lacey Schwimmer sought medical attention because she was having similar symptoms to Julianne's. I understand that her symptoms, as described in media reports, are consistent with endometriosis. The thing is that endometriosis cannot be diagnosed based solely on symptoms. There are other illnesses with symptoms that mimic endometriosis.

I am baffled as to how the physician who diagnosed both of these two women did so without performing a laparoscopy to confirm the suspected diagnosis. What about taking a biopsy to verify that the misplaced tissue was, in fact, endometrial tissue??

Laparoscopies are performed for reasons other than diagnosing endometriosis. Wikipedia describes laparoscopies as follows:

Wikipedia entry about laparoscopy

I have had endometriosis for 26 of my 39 years. I have attended endometriosis support group meetings at the local levels since my endometriosis was diagnosed in 1992. I had symptoms for 10 years before I was finally diagnosed properly by a laparoscopy.

I am not a medical professional. Even if I were, I am learning about these women's diagnoses through media reports. Even if I were sitting in the same room with these two women and I were a doctor, I wouldn't know if they were being properly diagnosed with endometriosis without doing a laparoscopy to find that out.

Endometriosis affects an estimated 5.5 million women in North America and it affects an estimated 89 million women worldwide. So it is certainly conceivable that these two women, who displayed symptoms of endometriosis, (and at least one of whom has a family history)... do indeed have endometriosis.

My concern is that neither of these women was diagnosed by a laparoscopy and they both appear on a show watched by many, many millions of viewers.

Many of these viewers undoubtedly never even heard of endometriosis before Julianne Hough and Lacey Schwimmer were diagnosed with endo.

My concern is that the general public may be getting misinformation about how endo is diagnosed... based on the news reports of Ms. Hough and Ms. Schwimmer.

Numerous websites imply that Ms. Hough's appendix was removed pre-emptively because cysts might have formed on it at a later date. Huh? Maybe there are some facts that the media is not reporting but that sounded odd to me. Plenty of women with endo hang onto their appendixes unless they become covered in endo.

Julianne Hough announced she was having an appendectomy on the air the night BEFORE her surgery. News reports also indicate that Ms. Hough had symptoms for 5 years but had not had a laparoscopy prior to this week. Therefore, the surgeon had (by all accounts) not yet seen her appendix before this week's surgery.

Ms. Schwimmer's diagnosis is described in numerous links as having been "caught early". The way that it is worded implies that because her endometriosis was caught early, she does not require surgery at this time. Fair enough.

She said (as quoted above) that medication is "taking care of it". I don't understand how her endometriosis symptoms are likely being managed well enough to make informed treatment decisions when she just got diagnosed today (if the media has the timeline straight)... WITHOUT a laparoscopy (considered the means for diagnosing endometriosis definitively by doctors and endometriosis organizations around the globe).

I understand that her interviews repeatedly mention her endo was "caught early". However, in my experience, women who suffer endo symptoms severe enough to send them in to their doctors for answers cannot possibly manage their symptoms within a matter of 24 hours or less from diagnosis... regardless of how "early" it was "caught". Sure, she may have been given a strong painkiller that has alleviated the type of pain that sent her to her doctor. I just don't understand the way her statement to the press was worded.

I don't mean to sound critical of her (or Julianne Hough) in any way!!! I'm just confused about the wording of things. It may well be that she is quoting her doctor verbatim. I have no clue. My concern is how the public will process these announcements. I am just concerned that the general public may be getting a skewed view of how endo is diagnosed, how it is managed, etc.

The medical condition of these two women is their personal business. Since they have both announced their diagnoses to the world, however, I believe it is important to use this as an opportunity to inform the public about endo. I worry that the media statements that have been made could be giving the public a fuzzy picture, at least, and maybe even a misleading picture, at most, on what sort of impact endometriosis typically has on patients properly diagnosed with it via laparoscopy.

It is very unfortunate that these two women are experiencing such symptoms at all... much less during an intense, physically demanding competition. They may well both have endo.

I just worry that neither one seems to have been diagnosed by laparoscopy. This could confuse the millions of viewers of Dancing With The Stars.

This is an opportunity to EDUCATE the public about this illness. I sincerely hope that is what will happen!!!

I'd like to add a comment that was posted on a website by a woman named "Heather". It nicely sums up the opportunity we have for media attention on educating the public about endo. This comment was posted on the following site:

Fancast: Inside TV

Heather posted this comment to Julianne Hough:

"I am so sorry to hear that you were diagnosed with Endo. However at the same time you are so very blessed to have been diagnosed at such a young age. I wasn't diagnosed until I was 34 after almost 20 years of suffering with the disease. So many doctor's told me what I was experiencing was just normal heavy painful periods. However my pain was throughout the whole month with also extremely painful ovulations. Unfortunately being that the Endo did not get diagnosed for so very long I am now at stage 4. Endo is on just about every organ. Bladder, liver, ovaries etc..... Thankfully after a few years of trying my husband and help from fertility treatments we conceived our miracle daughter Sophia Izabella who is now 6 years old.
I know you are newly diagnosed but Julianne you have a voice for this disease. So many millions of us women have tried to get the word out about Endo. We want to get the word out about it so, so many teen girls and women don't have to suffer for so many years before getting diagnosed. I have written tons of letters to Oprah, The View and many others in hopes of getting the word out but no one seems to care. It affects millions and millions of teen girls and women. Sadly even my own OB/GYN isn't very educated about it. Pretty much she says all she can do is put me on continous birth control pills to help. Anything you can do to help would be so appreciated. I would be more than happy to help you in anything you can do. Thanks so much Julianne

Posted by Heather | October 28, 2008 4:59 PM

Heather brings up a very good point. High-quality information about endometriosis should be disseminated to the public! Heather mentions having contacted Oprah and The View. These shows have predominantly female audiences and would be perfect vehicles for accurate information to be shared with the public. Ideally, the dancer or dancers would be interviewed on air with renowned gynecological surgeons who can speak to how to properly diagnose endometriosis and whether such physical activity is (in Julianne's case) advisable shortly after surgery.

It's enough to make me want to start a letter-writing campaign to Oprah and The View requesting that they feature endometriosis as the serious illness it is... and feature experts in the field who can speak to the complexities of this illness which baffles doctors and patients alike.

My acupuncturist tells me that in Traditional Chinese Medicine, "endometriosis" is actually 6 different illnesses. There are many different symptom sets for endo patients. Some women have no pain and discover their endo via a laparoscopy searching for the cause of infertility. Some women suffer debiliating pain. Some women have extreme pain and infertility. Some women with endo are within that spectrum somewhere.

I worry that the sound bites and gossip magazine reports on Julianne Hough and Lacey Schwimmer may do more harm than good IF someone respected from the medical community doesn't step up and say things like "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 make better treatment choices" or "endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive".

Or perhaps representatives of The Endometriosis Association and/or The Endometriosis Research Center could issue a statement to the press about the importance of laparoscopy in diagnosing endo???

The typical endometriosis patient who is NOT a celebrity could write letters to Oprah or The View until the cows come home and may never get endo featured on these shows.

If, however, one or both of these women from Dancing With The Stars were to appear on one or both shows (ACCOMPANIED BY PHYSICIANS SKILLED AT DIAGNOSING AND TREATING ENDOMETRIOSIS), such a show just might happen.

Short of that happening, I think it would take a massive letter-writing campaign to one or both shows to get proper coverage of this illness. Women with endometriosis suffer so much! They deserve some validation, understanding, compassion, and awareness of endometriosis!!

So if you or a loved one has endo and wants to help me organize a letter-writing campaign, please post your comments here. If we work as a team, we can turn this unfortunate situation for Ms. Hough and Ms. Schwimmer into an opportunity to educate the public and help endo patients!!

I would greatly like to hear from as many people as possible about the letter-writing campaign.

Who's in????????

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

Endometriosis Blog: BPA Controversy Continues As FDA Disputes Scientific Findings (UPDATED)

There has been controversy for some time about the safety of bisphenol A (BPA). I have written about BPA before. If you search my blog with the search box in the top left corner of the blog on the word "toxins", you'll get this:

Search results for 'toxins' on Jeanne's Endo Blog posts

See this post which includes links to numerous posts concerning toxins that affect our health:

SUNDAY, OCTOBER 12, 2008 --- Endo Blog: New Environmental Article – ‘Body Toxic’ and ‘Poisoned Profits’ – Evidence That Endometriosis/Other Conditions Are Linked To Toxins

See story about BPA below:

See the medpage TODAY story: FDA Advisers Denounce Agency's Decision on BPA Safety

Also, see video from NBC news broadcast last night (below). I should warn you that obnoxious ads may appear prior to the Nightly News clip. So if you are reading this at work, be aware of the Macy's undergarment ad that I just saw before the NBC news story on BPA. You may not want your computer blaring this ad at work. NBC Nightly News With Brian Williams ran a story last night on the topic of bisphenol A. Just scroll down to the topic and view the video clip of the NBC story that aired last night: FDA Under Fire For Lax Plastic Review

Here is an article from WebMD on BPA:

WebMD article: "Panel Criticizes FDA Bisphenol A Report"

Here is another new BPA article:

JS Online: Milwaukee Wisconsin Journal Sentinal

For more info on BPA, see this site:

Environmental Working Group

See the new related article from the website "Our Stolen Future" that covers endocrine disruptors:

Our Stolen Future's new article on endocrine disruption



Finally, I'd just like to say that I have learned over several years now that endocrine disruptors are an alarming issue for women with endometriosis. I believe the FDA's disregard for scientific evidence is disturbing. The fact that Canada has banned BPA from being used in the production of baby bottles should provide a clue that the FDA needs to take a closer look at the evidence.

If you are drinking out of a plastic bottle that has the number 7 in the middle of the recycle symbol on the bottom of the bottle, you are drinking water from a bottle with BPA. This is not good for anyone but it is especially troubling for endometriosis patients.

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UPDATE:

I just saw on my FEEDjit traffic monitor that someone had found this blog by searching on Google "bpa fda". When I clicked on their search terms, it took me to the following link:

Earthhope

I thought I'd pass it along as readers may be interested in additional details about the BPA issues. Unless consumers stop buying these dangerous products and/or write to their representatives, the companies that use BPA in their products will almost certainly continue to do so.
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: VIDEO On Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) And Post Viral Fatigue Syndrome

I came across a very interesting and moving video on this site: Sleepydust.

This online ME/CFS video was made for patients AND the friends and family of ME/CFS sufferers (i.e. sufferers of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome).

For more information about Sleepydust, please see: The Sleepydust Newspaper.

According to this organization's site, this video is for CFS, ME, and Post Viral Fatigue Syndrome patients and their families. It's just over 9 minutes long. (The Sleepydust organization also supports fibromyalgia patients).

VIDEO:



I found a Facebook group called "Chronic Fatigue/M.E - Increase awareness & understanding!" and that is how I found the Sleepydust video.

If you are interested in learning more about the group mentioned above, login to Facebook. (This requires registration if you do not have an account).

Then look for the "Chronic Fatigue/M.E - Increase awareness & understanding!" group.

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

Endometriosis Blog: Try "icarecafe"! It Has Many Forums Including One Called "Endometriosis Family"

You can view their website at http://www.icarecafe.com/. (For some reason, this hyperlink isn't cooperating. It should route you right to icarecafe, though).

It has information about a variety of conditions... including endometriosis and many other illnesses discussed on this blog.

Try it out and see what you think! :)

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

Endometriosis Blog: Taking A Break From Chronic Illnesses To Share "The Girl Effect"

After seeing this amazing video on a friend's blog, I had to share it here.

The Girl Effect:



See this site:

The Girl Effect

Thanks Tracee!

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

Endometriosis Blog: I Received The Kreativ Blogger Award Today From Maureen Hayes!

I am honored that I have received the Kreative Blogger Award after being nominated by Maureen Hayes at Being Chronically Ill Is A Pill.

I am really touched, excited, and grateful that Maureen thought of me for this award. Maureen sent me an email informing me that she had chosen me for this award. It is really an honor that she took time out of her busy schedule to select me for the Kreativ Blogger award. Maureen and I "met" during blogging activities for National Invisible Chronic Illness Week.

Maureen and I share multiple chronic illnesses and we follow each others' blogs. We also email each other offline providing mutual support. I am honored to get Maureen's support and insights!

Her posted comments and emails are always positive and uplifting. In addition to being quite ill, Maureen acts a caregiver for her mother. She is a strong and compassionate woman who works to make the world around her a kinder, better place.

I am honored that she nominated me for this award. In accepting this award, I am to outline six things that make me happy and then pass it on to others to give them some positive energy and recognition for their hard work. Such positive reinforcement strikes me as a great way to recognize the hard work of bloggers who consistently publish high-quality and informative blogs.

Some of the bloggers I have picked for this award are health bloggers. Others are not. I've decided to focus on honoring bloggers who have been supportive, helpful, and insightful... authors who work to put their writing to good use to help others in one way or another:

Here is my "6 things I love" list:

(1) My friends, family, fellow endometriosis patients in my community, and the many online support friends I have "met" online. They provide information, resources, different perspectives, and compassion that lift me up and give me positive energy when I need it most. I am grateful that CureTogether is focusing on endometriosis research (among other conditions).

(2) I find acupuncture extremely helpful. It is life-altering for me. With no disrespect to my numerous specialists, my acupuncturist has helped me more than the rest of them put together. He is amazingly talented!

(3) Music is transforming, uplifting, moving, and inspirational to me. It can lift me out of a bad mood. It can help me relax greatly. It can take me to another world of peace and serenity. I just LOVE music!

(4) I love to eat out... This is not always practical or affordable but I still love it. :)

(5) I love blogging and writing is really therapeutic. It is empowering and uplifting to connect with other chronically ill patients. As I have discussed with many friends over the years, I (like Maureen) dream of becoming a published author someday when I can muster the necessary energy to do so.

(6) At the risk of sounding repetitive, I agree with Maureen about the importance of laughter. I believe laughter really is the best medicine. Humor can be injected into a bad situation and make it easier to bear. I find comedy extremely distracting when I'm in pain and a good belly laugh works wonders.

Here are the people I would like to award. (They are not strictly health bloggers):

Allison from My Journey With Endometriosis

Alex from The In's And Out's Of Endo

Tracee from Empowering Girls: So Sioux Me

Sandy from IC Disease

Endochick from Endometriosis: The Silent Life Sentence

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

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

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UPDATED POST (at 9:19 am on Friday, October 31, 2008)

I have started a petition called:

Create Endometriosis Awareness & Understanding.

If you click the previous link, you will be routed directly to the online petition. I urge you to sign it!

The goal is to get a show like Oprah or The View to feature a story on endometriosis that explains ACCURATELY how endo is diagnosed, what amount of recovery time is needed, etc.

Please see my post about the petition I created last night:

Friday, October 31, 2008 Endometriosis Blog: Please Sign Petition To "Create Endometriosis Awareness & Understanding"!!!
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Editor's Note/Update (11:43 EST on October 28, 2008):
I found another link that provides a bit more insight into Julianne Hough's situation: E! Online

Julianne Hough of Dancing With the Stars reported on last night's show that she has endometriosis and will be having an appendectomy today:

USA Today: 'Dancing' star Julianne Hough to have surgery

The announcement on her website follows:

Julianne Hough's website

Her site has comments from well-wishers, including a message from the Endometriosis Research Center.

Having had 7 abdominal surgeries myself, including an appendectomy, my best wishes are with Julianne for a speedy recovery. Hopefully she has a skilled surgeon who will be able to remove the endometrial implants and the appendix that is apparently affected.

One thing that puzzled me is that she said on the show last night that she "had been diagnosed with endometriosis" and that she would be having surgery today to remove her appendix. What I'm curious about is how the endometriosis diagnosis was made if she hasn't had surgery yet and how her doctor(s) can predict that the endo is on her appendix??

As endometriosis patients know, this condition is diagnosed by a surgery called laparoscopy. I have been watching the show this season and I don't know of her missing a week until now. So I am assuming she did not have a laparoscopy since this season of the show began. All of the dancers talk each week about how physically demanding the dancing is. I can't imagine how she could have had a laparoscopy recently and been dancing this season up until now. If she had been diagnosed with endo previous to this season and they knew it was on her appendix, I wonder why they wouldn't have removed her endo in the previous surgery?

Julianne Hough's medical condition is obviously none of my business. The reason I pose these questions is that I wonder if she is being given appropriate medical advice and the right diagnosis. Since she mentioned endometriosis on a show viewed by millions (many of whom may never have heard of endo before last night), I just wonder how her situation will affect our society's views about endometriosis.

Her unfortunate health problems, which have been diagnosed as endometriosis, could be an opportunity to educate the public about this illness.

I believe public figures have a right to privacy and what Julianne Hough does or doesn't say to the media or on TV about her condition is entirely up to her!! What I am wondering is if she does, in fact, have endometriosis and she does return to the rigorous dancing on the show within days (as reports indicate she might, depending on how her surgery goes), what message will the public hear about this illness??

I hope this will be an opportunity to increase awareness in the general public about endometriosis. My hope is that Julianne Hough's surgery will go smoothly and that she will have a quick recovery.

I do wonder what message will be sent to the public if she does remain in this season's competition. With daily practice being typical and with laparoscopy recovery taking several days at a minimum and even weeks for others, I worry about her pushing herself to get back on the air too soon. I worry that the pressures on her will put her health in danger. I worry that the public may not understand how debilitating endometriosis can be for some endo patients.

Some cases of endometriosis present with milder symptoms than others. I hope that people do not get the wrong idea about what endo is, how long recovery from surgery typically takes, etc.

Endometriosis patients often face attitudes like, "it's in your head" and are often misdiagnosed or dismissed by doctors for many years prior to getting a proper diagnosis and treatment.

The average diagnosis of endometriosis is 9.9 years after the onset of symptoms. Many women search for years to find the right doctor to treat and manage their endo.

My endo symptoms began at 13. I was diagnosed by laparoscopy at 23. I am now 39 years old.

My thoughts are with Julianne Hough today. She is just 20 years old. I hope that she is obtaining sound medical advice about her condition. I worry about her being diagnosed with endometriosis affecting the appendix when she appears not to have had the surgery used to diagnose endo as of yet. I wish her the best and hope that her surgery goes well!

I emailed a fellow blogger who has endometriosis this morning because I know she follows the show. As I am writing this post, I just received an email back from this fellow blogger who has endo.

Apparently, she blogged about Julianne Hough last night:

Being Chronically Ill Is A Pill

Let's hope Ms. Hough's surgery goes well and that her situation increases the public's understanding of this challenging illness.

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

Endometriosis Blog: I Liked Maureen's Self-Esteem Idea And I Am Going To Try It Myself... Plus --- PLEASE VOTE!

I admit it... I may have faked you out in the blog post title! :)

Some of you were expecting me to blog about politics today with that reference to voting?

No. It's best not to tempt me into opening that Pandora's box. :) Once I get talking about politics, it would be hard to get me talking/writing about anything else. It would probably be best for me to stick to keeping the focus on health blogging.

So that wasn't what I was referring to in the blog post title. That was just a shameless attempt to get your attention.

When I asked for readers to vote, I wasn't referring to the upcoming (and very important) elections on November 4th. As crucially important as those elections are, I try not to blog about politics here because my blog would quickly transform from a health blog into a politics-only blog. There is nothing wrong with a political blog! That's just not my intent with this blog... :)

My request for you to vote is for something far less trivial than the upcoming Presidential Election (which I have been restraining myself from blogging about)! :)

Before we talk about the voting... I just wanted to put this week's posts into perspective since, in general, they are a bit of departure from my typical blog posts.

As I mentioned in yesterday's post on Tell-A-Friend, I am trying to lighten things up a bit this week after last week's fairly intense blogging about interstitial awareness week, endometriosis, and infertility awareness.

So this post will be a bit "out of character" (as compared with other posts on this blog as a whole) but a little variety now and then can be a good thing. :)

Writing this post about self-esteem has prompted me to ask a favor of readers that I normally wouldn't be likely to ask!! Honestly, I feel a little funny asking but it's the best way to get feedback from people about this blog...

So... before I proceed with this "self-esteem" post, I'd like to ask readers who find this blog useful to consider voting for it!

If you find this blog informative or helpful, would you please consider clicking on the "Blogger's Choice Awards: Top Health Blogger" graphic in the right sidebar of this blog... to vote for it and maybe even add a comment about it?

I work really hard on my blog but I am NOT very good at "self-promotion"! So following the lead of some bloggers who I really respect (and because it's just a nomination and not an actual award -- unless the blog should get picked at some future date based on votes/comments from blog readers), last week I followed the directions on the "Blogger's Choice Awards '09" site...

If you look at "Blogger's Choice Awards '09", it says "click here to nominate your blog or your favorite blogs & let the world decide". So I did something that seemed really unnatural to me and took the option to nominate my own blog. This felt very odd to me... but I had seen many of my fellow health bloggers do this and decided to follow their lead.

I'm learning that my lack of self-promotion skills is not a strength for blogging... The better I get the word out about my blog, the more people will read it. The more people read it, the more people (hopefully) will be helped by it. If they like it, the more likely they may generate some word of mouth that attracts more readers here. I know all of this intellectually... but it still feels strange to me to ask for votes. I'm working on it this internal struggle...

So if you like this blog and don't mind taking just a moment to vote for it and/or add a comment on "Blogger's Choice Awards '09" about it, I would greatly appreciate it!!

If I don't ask, most people will probably just pass right by that graphic by and not even realize that voting on my blog is an option at all.

Please click here to vote and/or comment on this blog:

"Blogger's Choice Awards '09"

On that note, I'm going to proceed to write about a post I just read by Maureen, a chronically ill blogger, over at Being Chronically Ill Is A Pill.

Her post essentially has to do with SELF-ESTEEM and not being afraid of knowing our own strengths! It's amazing how hard it can be to identify our own strengths when we're not used to exercising those "mental muscles"!

Chronic illness can severely damage self-esteem!

Losing ability to work outside the home, to do basic household chores, or to be "self-sufficient" are just some possible examples of ways that chronic illness can wear away at self-esteem...

Maureen had gotten the idea for her post "A Great Idea From Warning: Schematically Incorrect" from that blog's post called "15 Things I Like About Me - Raise Your Self-Esteem!"

NOTE: Here's a word of caution before you click the link to that site...

Before you click on the following link, I just want to make you aware that my "McAfee SiteAdvisor" software displayed a warning message when I pulled up the site that read "When we tested this site, we found downloads that some people consider adware, spyware, potentially unwanted programs". I had the option to 'allow' or 'block'. So, if your virus protection is not updated, you might want to skip the following link (and instead just refer to Maureen's site that prompted me to write this post)...

Now that we have that out of the way... Here is the blog post and site Maureen was inspired by for her self-esteem article. (My anti-virus software is brand new so I was able to just select "block" and then still see the blog post here): Warning: Schematically Incorrect.

Following Maureen's lead, I will now list "15 things I like about myself":

(1) I like to help others and seem to be pretty effective at doing so.

(2) I can take a negative situation (being very ill) and turn it into a positive (i.e. starting a local support group and blogging about my many illnesses to inform fellow patients and their families).

(3) I'm honest and ethical.

(4) I am getting better at practicing self-care and I recognize when I slip back into the "Type A personality" ways that contributed to me getting as sick as I am! I openly share the mistakes I made when I was younger (i.e. overdoing to the point of worsening my symptoms!) in the hope that it will help others bypass some of the pitfalls I've fallen into!!

(5) I'm smart enough to ask for help when I need it!

(6) I'm really resourceful and when I discover resources that may help others I share my findings as widely as I possibly can!

(7) I make a concentrated effort to compliment others on their strengths and/or when I notice them helping others.

(8) I recycle, reduce, and reuse. I try to avoid using plastic bags because I understand they are manufactured using petroleum products (and gas prices are high enough)! Plastic bags also don't biodegrade like paper does. However, I try to also avoid paper bags to save trees. I either buy what I can carry (in small trips to stores) or use bags that are durable and reusable. I try to spread the word to others about the importance of caring for our environment and minimizing use of products containing potentially toxic ingredients.

(9) I am very passionate about many things and I use my limited energy to try to follow my passions in an effort to make a positive difference in the world.

(10) I ask lots of questions if I don't understand things. I'm not afraid to "admit" that I don't understand something. I don't pretend I know more than I do. If I'm confused, I say so. I tap other people's brains when needed to learn and grow.

(11) I do my best to learn from my mistakes and avoid repeating them.

(12) I am not fake.

(13) I have survived some pretty dramatic (negative) events and I'm still strong! I may certainly have my moments where I feel weak but I have learned techniques for building myself back up when I feel this way. I have been through great adversity and extraordinary stress but I don't let it make me bitter. I play the hand of cards I'm dealt as best I can.

(14) I have learned to set healthy boundaries with people and not worry quite so much what people think. I still struggle with this one (!) but I am making progress.

(15) I really work hard to support those around me the best I can. I do my best to help family, friends, and even strangers to the best of my ability. I use my voice to speak out about issues that matter to me. I believe in social justice. I believe that all men AND women are created equal (in the entire world) and do not see myself as superior or inferior to anyone else. I believe that all people have value and worth. I try not to get too attracted to material things. I realize that people are FAR more important than "things"!

Wow! That was hard work coming up with 15 things. Once I had an idea for one, I could elaborate on it -- but producing each general concept took some real effort.

I hope that everyone reading this will take a few minutes to produce their own "15 things I like about myself" list. Thank you again to Maureen of Being Chronically Ill Is A Pill. Her post really got me thinking. :)

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

Endometriosis Blog: VIDEO About CureTogether, A Medical Research Organization!!

Faren from CureTogether posted this cool video about their medical organization... which is researching numerous illnesses.

It's primary focus initially is on endometriosis, vulvodynia, and migraines. However, they have plans to research far more conditions than these.

CureTogether Video



CureTogether just started a Facebook group called "Together We Can Cure Endometriosis".

Please just click on the Facebook button in my right sidebar to join this exciting new group!!

Related articles:

Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

For some reason I'm having trouble getting hyperlinks to work for the related links but if you just search my blog with the term "CureTogether", you'll find the above-mentioned links. Or just look in my blog's archives.

I'm known as "Jeanne Endo" on Facebook. Hope to see you there in the "Together We Can Cure Endometriosis" group!!!!!

Thank you!

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

Endometriosis Blog: Mixed Results Trying Out Tell-A-Friend For Sharing Posts

Last week was pretty loaded with intense health-related things. So I'd like to lighten things up...

I'm trying out a new social networking tool called Tell-a-Friend. Have any of you tried the Tell-a-Friend tool yet?

Here is how it's supposed to work... It should allow you to share blog posts with those you think might be interested in them via:

* email (various types)
* instant messaging (various ones to choose from)
* blog (different types listed)
* social networking (Twitter and Facebook)

Perhaps you've read something on this blog that you think might help someone else or lead them to a helpful resource? Maybe you'd like to try this tool and see how it works for you?

I've had mixed results trying it out myself but I'm interested in hearing others' experiences.

If you're interested in sharing info from one of the posts on this blog, click on the small, white "Tell-a-Friend" widget at the bottom of the blog post you'd like to share. A window will pop up. It will then give you choices of various ways to share the link. I had mixed results; some worked when I tried it and some didn't. (See details below)... When it worked, it was cool. When it didn't, it was frustrating. Since this is a new tool, I'm wondering if it's not fully functional yet???

Has anyone else tried Tell-a-Friend? I just heard about it via a ProBlogger email from last Wednesday. Is anyone else having trouble getting some of the functions to work?

Here are various ways to use Tell-a-Friend:

Email:

Direct email (manually typing address in): It worked fine.

Gmail: I couldn't get it to login to my Gmail to message myself even though I verified on Gmail that I was using the correct userid and password. Hmm.

Yahoo: It worked fine.

Windows Live: I didn't try this.

Social:

Twitter - It sent the message but it's not a useable hyperlink. So I really don't see how it works on twitter.

Facebook - It would not login to Facebook when I tried sending a message to myself.

Blog:

I tried BlogSpot only. It would not work when I tried sending to my own blog address.

IM:

I didn't try this yet.

If you try this out, let me know what you think! Maybe you'll have better luck than I did.

Here is a video on Tell-a-Friend. If you have tried Tell-a-Friend, please let me know how it worked for you.

Here is a video explaining Tell-a-Friend:



If you try it and you like it, here's where to get the code for the Tell-a-Friend widget:

Tell-a-Friend

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

Endometriosis Blog: Infertility Awareness Week Guest Blog -- Reprint From "Yaya Stuff" Blog (Alicia's Firsthand Experience With Infertility)

This is infertility awareness week.

PLEASE NOTE:

The following post on infertility is reprinted from Alicia's blog with her permission.


Please see her Yaya Stuff blog:

Yaya Stuff: My Life: Random thoughts, Daily Events, Miscarriage, TTC, IF, Adoption, Endo, Friends, Family, Nanny Job, Fur-Babies

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Wednesday, August 20, 2008

Infertility Support Group Meeting

Last night I attended a support group meeting for Infertility. I always walk away from support group meetings in a better mood. It's awesome to be in a room full of people who know exactly how I am feeling, without me even saying a word. Last night's meeting was on Chinese medicine to help infertility, and also gave people a chance to voice questions and concerns about living with infertility. It's nice to know that I'm not alone in my daily thoughts that surround my infertility. The woman running the meeting gave the wonderful advice (you've probably heard it before) of "Thou Shall Not Covet". It is hard for women with infertility to not feel jealousy over seeing women with babies and knowing that we want that so badly, but just can't have it. Jealousy, frustration, anger, sadness, and self-hating thoughts (ie; my body is not good enough, my body is a failure) are just a few of the near daily thoughts for a woman suffering with infertility. Not to mention that it also wears on a marriage and relationships. The monthly cycle is intensified for a woman with infertility. We count days constantly, we worry about over-exertion, we worry about timing. Then...we believe we are pregnant, we believe that "this is the month", we start taking every little symptom as a pregnancy symptom. We get our hopes up.....then.....once again.....our period shows up and these thoughts/dreams we just had all over again (that we promised we wouldn't indulge in this month) are crushed/shattered/destroyed. And don't even get me started on weight gain. Every month when we think 'I'm pregnant!' we start to eat a little extra, then, we're not pregnant, and all those extra calories were for nothing. It's a perpetual cycle. I just want to know, when will I get my happy ending?


PS. For my 'infertility readers'-in the left column of this blog is a song you can play that reminds me and helps me with my battle with infertility. It's called 'Chasing Pavement' by Adele.

"Thou Shall Not Covet"

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The "Chasing Pavements" song Alicia referred to in the above post is in the music player in my right sidebar.

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

Endometriosis Blog: Webcast On BLOGTALKRADIO About Endometriosis

Please see disclaimer at the top of my blog's homepage.

I listened to a webcast about endometriosis on BLOGTALKRADIO.

* The host was Elizabeth Lee Vliet, MD

* The show name is "Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones"

* The show description is "Painful Periods? You need to know about Endometriosis"

It aired on BLOGTALKRADIO on 6/9/2008 but is available as a webcast on:

"Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones"

Here is the description of Dr. Vliet's webcast on endo:

Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones

Whether you've been a patient of mine, or read my books, or attended one of my speeches, you know where I stand on issues involving hormones and women's health. My messages have been consistent over the years - and they've been proven reliable. Messages such as "Hormone is not a dirty word" or "Your health problems are NOT all in your head" or "Take charge of your health - and find a doctor who listens."

As you know, the traditional news media have not always been receptive to these messages. But advances in technology have opened up a new opportunity to get these life-saving messages to ever-larger numbers of women.

With this new understanding of technology, we decided to start a Blogtalk radio program called "Straight Talk". "Straight Talk" will be your chance to talk about the latest studies making the news, to clarify the meaning of "bioidentical," or to learn more about fibromyalgia, weight gain, insomnia and other hormone-related health issues. Occasionally I'll have a guest on with me - such as a newsmaker or a patient telling her story.

The webcast is 60 minutes long. I found it quite interesting. It starts by giving a basic description of what endometriosis is.

Then Dr. Vliet talks about a wide variety of topics including: hormones such as estrogen, estradiol, testosterone and estrone; the World Endometriosis Conference of 2002; adhesions; cytokines; inflammation; endometrial tissue; typical locations of endometrial lesions; The Endometriosis Association; painful bowel movements; painful urination; painful intercourse; dioxin; adenomyosis (endometrial tissue within the muscular wall of the uterus); laparoscopic surgery; theories on causes of endometriosis; the retrograde menstruation theory; the theory that endometriosis is a congenital condition that lies dormant during childhood; genetic factors; immunological factors; "chocolate cysts"; different colors of endometrial implants (that not all doctors are aware of/that may get missed during surgery); the importance of picking an experienced surgeon; dioxin as a cause of endometriosis; studies with a rhesus monkey colony; how dioxin-exposed monkeys didn't show symptoms until years after exposure; endocrine disruptors; her book; treatment options; suppression of ovulation; GnRH agonists; extreme fatigue; birth control pills as treatment for endometriosis; progestin; aromatase inhibitors; continuous birth control pills as an endometriosis treatment... and GnRH medication to treat endometriosis that can cause side effects such as depression.

Dr. Vliet said some women pass out or vomit from the pain of endometriosis and that up to 50% of endo patients have trouble getting pregnant.

During the radio program, she took several callers. These calls resulted in discussion of questions/comments on treatment options, endocrine disruptors, endometriosis as a cause of infertility, pregnancy, endometrial ablation, endometrial cancer, hysterectomy, GnRH agonists, hormonal changes following hysterectomy, bioidentical hormones, dietary issues, gluten, food intolerance, magnesium deficiency, hormone replacement therapy, and timing of hormone testing for women taking hormone replacement therapy.

She suggested listeners take a look at her website Her Place: Health Enhancement Renewal for Women, Inc.

She said it is a non-commercial website for informational purposes.

I took a very quick peek at Her Place: Health Enhancement Renewal for Women, Inc.

The site had this statement: "Our Website is dedicated to being educational and informative to help you have sound information to guide your discussions with your health professionals. We do not sell supplements, vitamins
or herbs, or other remedies, and we DO NOT use "Pop Up" ads". (Some of her books are featured on the site).

The site above has access to archives of other BLOGTALKRADIO shows featuring Dr. Elizabeth Lee Vliet. Just click on the yellow button "click for archived shows". This will route you to a wide variety of radio shows featuring Dr. Vliet.

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

Endometriosis Blog: Follow-Up To Yesterday's Post On Interstitial Cystitis (LINK TO VIDEO)

I'm including an abbreviated disclaimer here since I will touch on methods of diagnosing IC (see full disclaimer at the top of the homepage). Please consult your health care provider(s) for questions on treatment options for your chronic illness. Anything posted by me, or anyone who comments on my blog, should NOT be construed as medical advice.

This is a follow-up to yesterday's post on interstitial cystitis. Yesterday's post referred to a PBS documentary on interstitial cystitis. I just watched it online at the Healthy Body Healthy Mind website (see below) and it was really interesting. It's approximately 30 minutes long.

Just click the link below, click on "Women's Health" and you'll see "Interstitial Cystitis: Private Pain" about halfway down the list titled: "As Seen On Public Television"...

PBS Documentary "Interstitial Cystitis: Private Pain" on "Healthy Body Healthy Mind"

One thing I found interesting was that the potassium test was repeatedly mentioned as the means of diagnosing IC and there was no mention of "cystoscopy with hydrodistention" as being a means of diagnosing it. I have heard of the potassium test mentioned in the documentary but my IC was diagnosed (after 12 years of suffering) with a "cystoscopy with hydrodistention".

While I had had 3 previous cystoscopies by 2 different urologists, it was my 4th cystoscopy (by a pelvic pain specialist) that resulted in me finally being diagnosed, properly, with IC.

Since my diagnosis, I have had dramatic symptom relief with a combination of oral medication and bladder instillations.

The pelvic pain specialist I see treats many IC patients. His staff taught me how to self-catheterize so that I can do my own bladder instillations at home. This idea scared me at first but I have gotten used to it.

Some advantages for me of doing my own bladder instillations at home are:

* No driving to/from my pelvic pain specialist (about 45 minutes each way) for bladder instillations in between regular appointments...

* No co-pay for each treatment since there is not an office visit for each bladder instillation...

* The convenience of doing bladder instillations when I need them (according to my doctor's instructions)... rather than needing to be fit into my doctor's office hours...

There are different types of medications used for bladder instillations. My doctor has prescribed two different medications for instillation into the bladder.

I am also fortunate that my pelvic pain specialist had the foresight to order pediatric sized catheters for me. With my vulvodynia/vestibulitis, I can't imagine using anything else!

As I mentioned above, I take oral medication to treat IC as well.

In addition, I avoid acidic foods that can aggravate IC (something that is also mentioned in the documentary).

I thought this documentary was very well done. The part I found especially interesting was where they showed pictures of a normal bladder lining as opposed to the bladder lining of an IC patient. The difference in appearance was striking!

Related link:

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

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

Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

Here is more info on interstitial cystitis that was just emailed to me today by my local IC support group. Just click the links below for more information. Everything below is copied straight from the email I received:

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There are a lot of good links here, but you need to go to each website to have them connect.

Copied directly from the IC Network’s email...

Interstitial Cystitis Network

It's IC Awareness Week

Please join us in celebrating Interstitial Cystitis Awareness Week 2008, a week full of activities to help raise awareness for this little-known bladder condition and recognize the challenges of living with IC. This year’s theme is “When the going gets tough, could it be ‘123 IC’? Living with IC is tough. People with this painful and little-known condition need support and understanding. By increasing awareness of the symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call “the 123 of IC,” we aim to help people ask “could it be IC?” sooner.

This week, the National Association of Nurse Practitioners in Women's Health (NPWH), the Interstitial Cystitis Network and Ortho Women's Health & Urology invite you to participate in the following activities:

MONDAY, October 20

• A brand new documentary on interstitial cystitis, produced by Healthy Body Healthy Mind, will begin broadcasting on PBS stations across the country (PBS), a follow up to a documentary produced a few years ago. It will feature David Kaufman MD, Jeffrey Dell MD and IC patient spokesperson Terry-Jo Myers. Contact for your local PBS station for broadcast times or visit the Healthy Body Healthy Mind. You can also catch a highlights of the documentary in podcast form at: All About IC.

• “123 IC” contest winners & 2008 IC Ambassadors announced on All About IC

TUESDAY, October 21

• IC Week Podcast: “Interstitial Cystitis 101”

WEDNESDAY, October 22

• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on All About IC

THURSDAY, October 23

• IC Week Podcast: “When the going gets tough, don’t let IC isolate you!” with ICN’s Jill Osborne on All About IC

FRIDAY, October 24

• Check out real patient stories and encouraging words on All About IC

For more information, please visit: All About IC. Please check out our Facebook and MySpace pages.

Don’t forget to pass this on and help to spread the word!

Ortho Women’s Health & Urology sponsors this week to help raise awareness about IC.

Bring IC Awareness Week To Your Local Community

A formal press release has been created for media outlets. Click here to view! I encourage each of you to share this by email with your local newspapers. Ask the health or lifestyle editors if they will do a story on IC in your community and, better yet, consider sharing your personal IC story with them. If you get interest, please let the editors know that the ICN would be happy to provide quotes, background information and more to help make that story a reality. They can contact Jill directly at: jill@ic-network.com or by calling (707)538-9442.

IC Support Leader Recognition

IC Awareness Week is also the perfect opportunity to express our thanks to those people who have made our journey so much easier, the local IC support group leaders. Talk about unsung heroes. IC support group leaders often work, with little or no help, to make meetings happen in their communities. They spend hours with patients in need on the phone or at the hospital. They raise awareness with their local newspapers. The advocate for the needs of IC patients with local doctors and the medical community. All for no pay and with little, if any, recognition. They are, in our opinion, the most important part of the IC community because they work at the local level and directly with patients.

When a support group leader finally retires, we have to make sure that they know just how important their efforts were. Case in point and one of my personal IC heroes, Molly Glidden, long time Boston support group leader who is stepping down this month. I’d like to take a moment to say “Thank You” to Molly for being such a great friend, for always being willing to help so many other patients and for working with me, behind the scenes, to offer support to some patients who were very, very ill. Molly is the epitome of a kind soul and she, along with countless other past and current support group leaders, deserves our recognition for a job very well done. Thank you for everything you’ve done Molly. You’re an IC hero!

We'd also like to say a fond farewell to Alice Terry who has, for many years, run the IC Support Group of Australia. She published their national IC newsletter and helped spread the word about IC throughout that country. That group is now being run by Dr. Katya Buc Stooke (Contact details below).

So please join us in using IC Awareness Week to thank your local IC support group leaders!! Give them a call, send an email, card or flowers. Better yet, ask if they can use some help in 2009! Remember, they can’t do it all by themselves. The more hands and minds involved the better!"

AND THIS....copied from ICA’s email news:

The website address follows:

Interstitial Cystitis Association

"The Interstitial Cystitis Association (ICA) would like to inform you about three exciting events sponsored by other groups that are taking place in the coming weeks. While these are not ICA-sponsored events, we thought these activities might be of interest to you.

Interstitial Cystitis Awareness Week 2008 October 20 - 24, 2008

The National Association of Nurse Practitioners in Women's Health (NPWH, a non-profit organization), Ortho-McNeil (the makers of Elmiron), along with the Interstitial Cystitis Network (ICN, a for-profit publishing company), invite you to participate in a week full of activities to help raise awareness for IC and recognize the challenges of living with it.

Click here to find out more about the 123 IC Campaign."

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

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

RE-POST (with added link below):

IC Disease - It's IC Awareness Week: What's Happening

I apologize for posting the above link a little later than I had hoped. I am having a really rough week with pain.

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Original Post:

I wanted to give readers some notice that National Interstitial Cystitis Awareness Week is October 20th through 26th, 2008.

There are numerous ways interstitial cystitis (IC) patients and their loved ones can help raise awareness about interstitial cystitis.

Here are some ideas for how you can make your voices heard about this illness, which can often be debilitating...

++ You can write to your legislators and explain how interstitial cystitis affects you and your loved ones. Advocating for ourselves is so important. Contacting our representatives can have a positive impact! Awareness and research dollars are crucial to making headway and progressing in improving the quality of life for interstitial cystitis patients.

++ Another idea is to contact the media (print, radio, local TV news, etc.) and volunteer to share your story. You might be surprised that they might be responsive to your offer to be interviewed. I was interviewed about endometriosis a few years back on the health segment of the local TV news and it was an interesting experience that reached more people than we could have from other methods. If you contact media, you may want to do so as soon as possible. Newspapers have lots of deadlines... so the sooner you approach them, the better your odds for being featured. I would definitely suggest mentioning to them that Interstitial Cystitis Awareness Week is October 20th-26th, 2008! It could greatly increase your odds your being featured.

Thank you to Sandy of IC Disease: Life With Interstitial Cystitis, Vulvodynia, Incontinence, and & Other Bladder Conditions for bringing this awareness week to my attention.

See the "IC Disease" article about awareness week: October 20 - 26: National Interstitial Cystitis Awareness Week

For a resource on interstitial cystitis, see: The Interstitial Cystitis Association.

Related links that have mentioned interstitial cystitis previously:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Wednesday, October 8, 2008 Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis

Friday, September 19, 2008 Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

Saturday, July 26, 2008 Endometriosis Blog: The Importance of Relaxation To Your Health...

Friday, July 25, 2008 Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Wednesday, July 9, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

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

Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

This week is infertility awareness week...

My friend Alicia has numerous insightful, informative posts on infertility and miscarriage... based on her firsthand experience.

Please see my friend Alicia's blog for personal insights on infertility and miscarriage:

Yayastuff -- My Life: Random Thoughts, Daily Events, Miscarriage, TTC, IF, Adoption, Endo, Friends, Family, Nanny Job, Fur-Babies (**For posts on specific topics please see 'Labels' in left column of blog**)

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

Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

The following post contains information from RESOLVE, The National Infertility Association...

This is a re-run of the October 10, 2008 post that first mentioned this infertility awareness week. I wanted to be sure to mention it again now that we are in the awareness week itself!

RESOLVE:
National Infertility Awareness Week
October 19-25, 2008

RESOLVE: The National Infertility Association

The following information is taken directly from the RESOLVE website listed above. I just wanted to pass this along for anyone who is interested in checking it out.

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PLEASE NOTE:

If you are interested in registering for the web chats mentioned below, please see RESOLVE: The National Infertility Association.

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Join us for two Web chats led by leading fertility experts
on different topics surrounding infertility.

Moderated by Barbara Collura, Executive Director of RESOLVE
Tuesday, October 21, 2008, 8:00 p.m. ET
Cancer and Infertility
Speaker: Lindsay Nohr Beck, Founder and Executive Director, Fertile Hope
Cancer survivor Lindsay Nohr Beck will lead a discussion about the options available for cancer patients in the different phases of diagnosis and treatment. In her discussion, Lindsay will review the available resources that can help you communicate with your oncology and fertility teams, provide you with financial assistance, and support you in getting through this difficult time.

Click here for helpful resources about cancer and infertility.

Register here.

Wednesday, October 22, 2008, 8:00 p.m. ET
Get “In the Know” About Your Fertility
Speaker: Dr. Alice Domar, Assistant Professor, Harvard Medical School; Founder and Director, Domar Center for Mind/Body Health at Boston IVF
Dr. Alice Domar, the “Fertility Goddess” according to Vogue, will lead a discussion about both the physical and emotional impact of infertility. Through the discussion, you will have an opportunity to learn more about the causes of infertility in males and females, tips for coping with the emotional impact, as well as available treatments and resources that can help couples navigate medical costs.

Register here.

Not able to participate in one of the discussions? The information will be posted on www.resolve.org/takecharge and in the new RESOLVE Resource Library after the discussions.

The Take Charge! Web chats are brought to you by Fertility LifeLines™, a free support service provided by EMD Serono, and by RESOLVE: The National Infertility Association.

Fertility LifeLines™ and RESOLVE: The National Infertility Association will keep your information confidential and will not use the email addresses provided for purposes other than to send reminders about the Web chat programs. We do not sell your personal information to anyone.

Thank you.

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

Endo Blog: Can You Solve The Case Of The Disappearing Sidebar?? PART THREE... It's Not Just Me!

For the third time in 12 days, most of my blog's sidebar has disappeared. I decided to do a little sleuthing since this is getting old. Previously, I had asked a couple of blogger friends (both of whom use BlogSpot) if they had ever had this problem... but they had not.

So last night I Googled "disappearing sidebar on blogspot". Hmm. It was interesting because there are many other bloggers like me that this has happened to. Lovely.

I browsed through link after link of bloggers who have experienced this same problem and read through numerous ideas of what might fix it. I got too tired last night to deal with it for another minute and temporarily gave up.

It is really frustrating that I should need to take time to "de-bug" my sidebar. After all, the layout page looks perfectly fine. The .html page looks fine too. The only page that doesn't look fine (some of the time, anyway) is my homepage. Of course, that's what really counts!

The thing is I'm too sick to be rooting through the Internet trying "fix" after "fix" to get my sidebar to just stay put. I just don't have the energy level to chase down the magic solution to this sidebar issue.

I do know that several of the bloggers who had posted about "disappearing sidebar on blogspot" mentioned they use Internet Explorer. I'm open to all options but if I were a betting woman (which I'm not), I'd bet that this is a BlogSpot problem rather than an IE problem. The number of hits that came up when I searched "disappearing sidebar on blogspot" was pretty telling.

Soooooooooo, I'm hoping it will soon "fix itself" again. I do not have enough energy to "de-bug" this right now. If there were a simple fix that works for many people, I believe I would have found it by now. Weeding through link after link about this topic is just too overwhelming right now.

I fully realize there are much worse problems in the world (!!!) than a partially missing sidebar (and footer). At the same time, I have expended lots of time and energy designing my blog and I really don't appreciate when a good chunk of it mysteriously disappears 3 times in 12 days. It shouldn't be happening at all!

If only I could obtain an email address to contact Blogger.com directly (NOT posting the problem via a "help forum"). Such an email address for support seems pretty elusive. Does anyone have such an email address for Blogger.com?? I'd love to get my sidebar back for good. At the moment it is still missing because I just checked.

Related links:

Saturday, October 11, 2008 Endo Blog: Can You Solve The Case Of The Disappearing Sidebar?? PART TWO

Sunday, October 5, 2008 Can You Solve The Case Of The Disappearing Sidebar??

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

Endometriosis Blog: VIDEOS Of Husband's Grief Over The Loss Of His Wife Who Had Fibromyalgia. These VIDEOS Could Help Many People!!!

I just came across this moving video. I will forewarn you before you watch it that it is very emotional. I am crying as I write this post. The video is a man talking about the loss of his wife. His wife had fibromyalgia. This man is trying to create awareness about fibromyalgia, chronic fatigue syndrome, and chronic pain.

This video is very powerful. Again, I will caution you that this video may stir up painful emotions for viewers. However, I feel compelled to feature it here because I believe this widower really captures the tragedy that an illness such as fibromyalgia can cause.

In the video, you will hear this man make reference to a New York Times article that questioned whether there is such a thing as fibromyalgia at all. This article was very upsetting to me and to many fibromyalgia patients (and the doctors who treat them and believe fibromyalgia is VERY REAL)!!

I believe this man's compelling video is a chilling but loving account of how fibromyalgia affected his wife. I see it as a tribute to his wife... by a man in severe emotional pain who is working hard to create awareness about the scope of illnesses like fibromyalgia and chronic fatigue syndrome!

I urge you to watch this video and listen to this man's story of what his wife went through. His wife's story is chilling, sad, and tragic... but he is working to share her story to help others.

After the video, I will include a link to the New York Times article he referenced that upset so many people. Then I will also post the letter I wrote to the New York Times when that heinous article came to my attention.

This man asks that viewers of this video write to Oprah in an attempt to get this story aired on her show.

Please take 9 minutes and 54 seconds out of your life to watch this compelling video. It may bring you to tears as it did me. However, I believe it is worth watching. I admire this husband's tenacity in working to create awareness about the profound impact illnesses such as fibromyalgia can have on patients. This video gave me chills.

I was unable to get the embedded code for this video to work but if you simply click on the hyperlink below, you will be routed to this powerful video:

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VIDEO --- "Fibromyalgia - Lisa's Story".

Here is the compelling video from Lisa's husband... "Fibromyalgia - Lisa's Story"

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Here is a link to the terribly inaccurate New York Times article questioning the existence of fibromyalgia:

New York Times article on fibromyalgia

Here is the letter to the editor of the New York Times that I sent in February 2008:

From: Jeanne
Sent: Friday, February 29, 2008 11:10 PM
To: 'public@nytimes.com'
Cc: 'nytnews@nytimes.com'; 'managing-editor@nytimes.com'
Subject: OUTRAGE over "Drug Approved, Is Disease Real?"

ATTN Mr. Clark Hoyt, Public Editor

Cc: News Department; Managing Editor

I just learned of a January 14, 2008 (front page) New York Times article called “Drug Approved, Is Disease Real? I am astonished to have read this troubling, hurtful, inaccurate article. I was shocked that the New York Times article questions whether fibromyalgia is real!

The article’s portrayal of fibromyalgia as a fictional illness is appalling!

Can you imagine if the NYT wrote an article about cancer being imaginary? I have fibromyalgia and I have had cancer; trust me that fibromyalgia is as real as cancer. How many letters and calls would you be flooded with if cancer were painted as a fictional illness? Can you imagine the uproar?

This article drags millions of fibro patients through the mud with its inaccuracies. Fibro patients have enough trouble without people believing them to be fakers. Articles like this get read by many people. They read the “big bad pharmaceutical company” slant of this article and are left to believe that any fibro patient they meet is faking, lying, imagining, etc. This is very damaging to people already suffering so much. Fibro patients need MORE support from family, friends, and co-workers… not LESS!

Let me be quite clear. I have nothing to gain by “saying” I have fibro. I don’t receive any money from pharmaceutical companies (though they get plenty of mine)! I have been known to complain about the corruption of pharmaceutical companies, the expense of their drugs, and their ridiculous profit margins. I am not a lobbyist, pharmaceutical sales representative, or a person who stands to gain financially in any way by speaking out against this heinous article.

By the way, the reason I have identified myself as a fibromyalgia patient is that my doctor diagnosed me with it. He then referred me to a specialist (rheumatologist) to confirm OR rule out fibromyalgia. The specialist confirmed that I have it.

It is excrutiatingly painful! Cold weather, in particular, aggravates my fibromyalgia symptoms. Where I live, we had the pleasure of sub-zero (Fahrenheit) weather in the last few days (I am not referring to wind chill either). Temps like these cause unspeakable pain for me. There are times it hurts to give my husband or child a hug. Sitting in a chair for too long can result in increased pain. The list goes on and on...

An article that sets out to discredit a valid illness (recognized by many physicians, despite what was implied by the small number of apparently cherry-picked doctors that were quoted in this article) is reprehensible. This article is medically inaccurate and, quite frankly, just plain irresponsible journalism.

The article was offensive and potentially has hurt/will hurt many lives.

No one is more game to read an article proving the greed and corruption of pharmaceutical companies than I am. However, slamming an entire illness that’s well-recognized by most health care professionals hurts the millions of patients with this very real illness. Slam pharmaceuticals all you want! Please just make sure when you do so that the article is properly fact-checked. The doctors you quoted as insisting this illness is not real are in such a minority. Why spin a story to fit a category (i.e. “beat up the pharmaceutical companies”)? Why not just present the facts? The doctors’ opinions you quoted are not the norm.

I strongly believe the New York Times should print an apology and a retraction. Also, it should run articles with accurate information from doctors whose views aren’t so obviously out-of-step with the vast majority of doctors.

When someone is chronically ill, every day is full of challenges. The fibromyalgia patients I’ve had the privilege of meeting are better than most at “adapting” to adversity, illness, and pain… despite what the doctor you quoted said.

Please consider using more care before printing articles that will be read by many in your widely-circulated newspaper.

Thank you,

Jeanne

My thoughts are with this man who is grieving the loss of his wife but also rising up to create awareness and foster understanding of fibromyalgia, chronic fatigue syndrome, and chronic pain!!

His video will help others. Perhaps he'll even get to discuss what happened in his wife's situation with a much wider audience such as Oprah's.

This man's courage in the face of such tragedy is helping other people to comprehend how profoundly fibromyalgia and related illnesses can affect patients and their loved ones. I believe he is doing a great service by posting this video.

Related articles/previous posts from my blog referencing fibromyalgia and illnesses correlated to it/co-existing conditions:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Monday, October 6, 2008 Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition


Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, September 1, 2008 Endometriosis Blog: Fibromyalgia Awareness

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

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Second video from Lisa's husband:
Husband's Quest/Lisa's Story

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