'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!

Recently I had the pleasure of speaking with Penny Allen who is a Medical Writer for The Interstital Cystitis Association.

I had previously written here about our conversation regarding interstitial cystitis. (We specifically discussed self-catheterization and bladder instillations as a treatment method). Please see related links on IC at the bottom of this post.

The latest edition of Cafe ICA (November 2008 Cafe ICA, Volume 8, Number 11) was published today.

To sign up for the Interstitial Cystitis Association's Cafe ICA (a free online monthly news digest), just click here:

Cafe ICA (see left side of screen to sign up)

When I was first diagnosed with interstitial cystitis, I joined the Interstitial Cystitis Association and found them very helpful and informative!

To learn more about the Interstitial Cystitis Association and/or to become a member, just go to their website:

Interstitial Cystitis Association

The ICA has more in-depth articles in addition to the free monthly Cafe ICA digest mentioned above. So check out their site for more info.

Here is today's mention of this blog from the Cafe ICA online digest!

(November 2008 Cafe ICA, Volume 8, Number 11)

Endometriosis Blogger Makes the IC Connection

Just as bloggers have transformed political news, they are also transforming health news. Newspapers, magazines, and TV have reported much more on IC in recent years. But now, IC and the ICA are also getting reported on in the blogosphere.

Blogs by savvy patients help raise awareness every day and get good information out to those like them, like Jeanne's Endo Blog. The blog is mainly about endometriosis but also about associated conditions, including IC. In fact, a substantial share of IC patients have endometriosis (estimates range from 30 to 85 percent) and vice versa. And sometimes, IC is misdiagnosed as endometriosis. This blogger knows both well, and on September 19, 2008, she put the spotlight on the ICA and its work. She took note of the ICA's Annual Report for 2007, a year that brought much more awareness that IC doesn't travel alone. Now, major research effort is focused on the connections between the conditions in the hope of homing in on the cause and better treatments. She has also blogged about the PBS documentary "Interstitial Cystitis: Private Pain," Interstitial Cystitis Awareness Week, and Bladder Health Month.

In addition, Jeanne keeps her finger on the news pulse of many other related conditions, such as fibromyalgia and vulvodynia, and on awareness and support efforts from all over the world. Often, she just plain inspires, pointing her readers to moving art, poetry, and thoughts, such as this:

"Life's most urgent question is: What are you doing for others?"
-Martin Luther King Jr.

Please note that there are over a dozen links on IC on this blog but here are a couple of related links:

Friday, November 7, 2008 Endometriosis Blog: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization


Wednesday, October 22, 2008 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.

Health & Healing: Dale Chihuly's Glasswork... Art Can Be Healing!

As I tend to do about once a month (give or take), I am posting something that is not directly health-related. The reason for that operative word "directly" is that art and music are very healing for me. So, indirectly, I believe any artwork or music that is moving, touching, and/or beautiful CAN be healing. I believe that this is the case for many other people as well.

I have had the pleasure of seeing not one but two Dale Chihuly
exhibitions. One was in Florida and the other was in New York. I cannot tell you how beautiful his artwork is.

If you have never heard of Dale Chihuly, stay tuned. His artwork is just breathtaking!

Before viewing the video, I urge you to look at the following:

Dale Chihuly's website

I cannot recommend highly enough that his website will almost surely impress you.

I would suggest viewing this link before watching the video below the link.

It will familiarize you with his amazing work and the clip will show some behind the scenes video plus some questions and answers when Dale Chihuly spoke at Google's headquarters this past summer in Mountain View, California. The video shows Chihuly's work displayed indoors and outdoors all over the world.

So here, once again, is the site with so many gorgeous pictures of Chihuly's work:

Dale Chihuly's website

Now that you have seen some of the remarkable work of Dale Chihuly, you may wish to view the video.

Here is the YouTube description of the following video. (It runs about an hour):

Glass artist Dale Chihuly visits Google's Mountain View, CA headquarters to discuss his Gardens of Glass. This event took place on June 19, 2008, as part of the Authors@Google series.

Dale Chihuly is most frequently lauded for revolutionizing the Studio Glass movement by expanding its original premise of the solitary artist working in a studio environment to encompass the notion of collaborative teams and a division of labor within the creative process. However, Chihuly's contribution extends well beyond the boundaries both of this movement and even the field of glass: his achievements have influenced contemporary art in general. Chihuly's practice of using teams has led to the development of complex, multipart sculptures of dramatic beauty that place him in the leadership role of moving blown glass out of the confines of the small, precious object and into the realm of large-scale contemporary sculpture. In fact, Chihuly deserves credit for establishing the blown glass form as an accepted vehicle for installation and environmental art beginning in the late twentieth century and continuing today.

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

Endometriosis Blog: November Is National Prematurity Awareness Month

Today I was inspired to write a post after reading an excellent article posted by Kelly Damron!

Her blog is called Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences.

I was just reading Kelly Damron's blog post regarding the fact that November is National Prematurity Awareness Month.

I didn't realize until reading Kelly's post that November 12th was National Prematurity Awareness Day because I hadn't heard about it until after the fact!

However, again, the entire month of November is National Prematurity Awareness Month

When certain conditions get more attention and research dollars than others, it's hurtful and damaging to those who have the "under researched" issues that are less talked about in public circles.

Now don't get me wrong. I'm not advocating graphic descriptions of laparoscopic surgeries at the dinner table. What I am saying is that if a bladder cancer patient can discuss his/her condition with family and friends... then patients with endo or patients with infertility/miscarriage history and/or adoption proceedings should be able to discuss their situations just as freely... if they wish to do so.

As Kelly alluded to in her blog post, relatively little attention is given to events honoring "infertility, loss, and premature babies" and that there is much more publicity given for other conditions. This simply should not be the case.

Here are my thoughts after talking with many women who have or have had infertility, miscarriages, and had premature babies...

1) Our society as a whole doesn't know how to deal with these issues. People may gave good intentions to be "polite" and to not be "intrusive". They may avoid discussing these topics for fear of upsetting couples dealing with these issues. However, this can lead to isolation of the couple and make the healing process harder for them than it would be if they felt they could talk openly about it. While patients who go through these emotionally draining and exhausting issues all have their own ways of dealing with their situations, most that I have met WANT to talk about it.

PLEASE NOTE: For open and candid discussion about infertility, miscarriages, and starting the adoption process, please see my friend Alicia's information-packed blog Yayastuff.

Alicia's candor about the wide range of emotions she has been through on her journey is a testiment to her strength and determination. Her courage is inspiring her many readers on her blog!

2) Illnesses or conditions that affect or are related to reproductive organs tend to be less openly discussed than others. For example, endometriosis is rarely brought up in casual conversation but if a person were to talk about asthma or diabetes, the conditions would/could just be discussed openly. There are people who are uncomfortable discussing issues that make them feel awkward. It has taken years for me to do a 180 degree turn from being quiet, shy, and downright mousy about my endometriosis (and other) symptoms... to being open, candid and comfortable talking about my illnesses as if they were any other. (It took me a few years to fully comprehend that I have nothing to be embarrassed about or feel awkward about. If others don't feel self-conscious discussing their conditions, why should I feel muzzled about my health issues)???

I'm not sure if my theories answer Kelly's question or not but I have seen in working with many women in endometriosis support groups that there is often a "stigma" or a level of embarrassment that women sometimes feel when discussing "taboo subjects" such as periods, cramps, hormones, etc. This is truly unfortunate.

How can we band together to make headway on these issues if people aren't talking much about it? If the people dealing with these conditions don't feel at liberty to discuss them with anyone but fellow patients, how will anything ever change for the better as far as awareness?
-----
Please see previous articles I have written about the other (related) awareness days and/or weeks that I heard about in time. Thanks to Kelly, I heard about awareness month in time to post about it for November!

Related articles:

Wednesday, October 15, 2008 Stillbirth Awareness and Research Act

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

Tuesday, October 21, 2008 Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

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

Endometriosis Blog: National Adoption Awareness Month

November is National Adoption Awareness Month.

My husband told me yesterday he had heard something about this on the radio but he didn't catch whether it was an awareness day or month.

I just saw this blog post on my friend Alicia's blog, Yayastuff.

Alicia's November 16, 2008 blog posts refers readers to another blog that features an adoption post by Felicia.

I would like to thank Alicia for bringing this post to my attention and Felicia of The Life Of A College Stay At Home Mom for writing about awareness month!!!

Alicia and her husband have officially started the adoption process. Please see her blog for more information about adoption: Yayastuff.

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

Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!

Meet Endochick.

She writes Endometriosis: The Life Sentence. I have followed this blog for quite awhile. It is fantastic!!

To date, we have 171 signatures on the petition referenced below to create awareness of endometriosis... Feel free to sign it if you like!

Endochick's witty sense of humor, great insights, and educated comments always keep me coming back for more. Endochick has given me permission to reprint her blog post from yesterday as a "Guest Blogger" post here today. What follows is her post from November 13, 2008. I greatly appreciate her allowing me to re-post it here and encourage you to check out her blog. For more of Endochick's endometriosis writings laced with an amazing sense of humor and the sad truths about what living with endo can be like, I encourage you to check out her consistently high-quality blog.

Endochick's "Dancing With the Stars - Endometriosis" post from her blog Endometriosis: The Life Sentence:

While I don’t watch this show, I have heard about the controversy surrounding two of the stars’ recent admittance of having endometriosis. The first being Julianne Hough’s. She is quoted as saying, “They want to clean out the cysts and take out my appendix, too, because later on it can be affected by the cysts.” I’m assuming - in this case - if these were endometriomas then there would be no need for a diagnostic lap because the doctor would know what she had. I’m sure, with the money that doctor is probably charging in Hollywood, a CA125 was done to rule our cancer for those thick walled cyst since she hadn’t already had confirmed endometriosis. Thus, leaving only a diagnosis of endometriosis and no need for a diagnostic lap. Still though, from a public relations perspective - it would’ve been wise for her to stay mum until after the surgery and then come out with her diagnosis since both the Endometriosis Association and Endometriosis Research Center say a laparoscopy is the only definite way to confirm endometriosis.

Now, Lacey Schwimmer is another issue. She is quoted as saying, “I went to go get checked out today and I actually have the beginning onset of what Julianne has, which is endometriosis, and it hurts very bad,” admits the dancer. “Right now I’m insanely weak, and the room is spinning.” If her doctor suspected she had endo, he should have put her in for a lap to diagnose it and clean it out, and help her pain and weakness (which I assume is from blood loss). The earlier endometriosis is diagnosed the better the outcome for the patient! Just tossing an endometriosis diagnosis onto every painful period or heavy period can be dangerous, and I’ll get into that after I offer two quotes below:

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”.

Endometriosis Research Center: ”Endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive”.

Now, with that being said: While endometriosis can ONLY be diagnosed definitely by a laparoscopy, doctors will often go on patient history coupled with family history, and symptoms and give a “possible diagnosis of endometriosis” or “suspected endometriosis.” Why is this important? Because there are a few medicines that insurance companies will not pay for until a laparoscopy has been done to confirm endometriosis. Until then, a doctor cannot use medicine like Danazol or Lupron to treat “suspected endometriosis.” I had “suspected endometriosis” for over 10 years. My doctors were sure that’s what I had based on my symptoms, what medicines worked and didn’t work, and the fact that my mother had it and my aunt. BUT even they told me it couldn’t be confirmed until I had the lap.

NOW - why do the EA and ERC and the American Medical Association (AMA) call for laparoscopy to confirm the presence of endometriosis in order to make the diagnosis? That is because there are a host of pelvic and abdominal maladies that can mimic the disease, and often endometriosis sufferers suffer from at least one of them as well (i.e. IBS).

These are:

Infection - this is especially true if your symptoms come on suddenly and out of the blue

Diverticulitis

Irritable Bowel Syndrome

Inflammatory Bowel Disease

PID

Vaginitis and BV

STD'S

Functional Ovarian Cysts

Ectopic pregnancy

Do you see the need for the laparoscopy protocol???

Let me provide a real life example of the importance for DIAGNOSIS:

My sister, she was 22 when this occurred, began bleeding profusely. Soaking pad after pad, months rolled into one after the other until she went three month without a single break in her period. That’s three months without a day where she didn’t bleed. I never had excessive bleeding with my endometriosis - mine is all pain. My mother, though, bled constantly. My mother told my sister that that was how her endometriosis started. Since my sister couldn’t get into the doctor right away, she felt she could wait another two months through this hell of constant bleeding until her annual exam. At her annual she described what was going on, her family history, etc. Her doctor said that it could be endo since my sister did have a history of some nasty periods and had a failed marriage because they tried for 2 years to have a baby and couldn’t get pregnant. My sister asked to be treated, doctor said all I can give you is a depo shot to stop the bleeding because it’s not confirmed. They agreed to see if that would stop the bleeding first because my sister didn’t have the time at work to take for surgery. Meanwhile, her pap results came back - she didn’t have endometriosis…. her bleeding was from cervical cancer.

I am not discrediting the fact that the women have endometriosis. I am sure they do and feel horribly for them. No one should have to get this disease. It’s a terribly chronic malady that needs a cure. It afflicts too many women! We should stop bickering and band together to fight this! That was the point of Jeanne’s petition. Endometriosis is getting attention right now because of the DWTS’s celebrity, but the wrong message is getting out there. Her petition is simply calling for more media coverage of the FACTS. And we need that. How is this disease DIAGNOSED and TREATED? Let’s get that covered on Oprah. A whole show devoted to it. Could you imagine the women we could reach in that ONE HOUR? Women who are sitting on there couches, laying on their beds, in pain pain, curled into balls, slaves to their heating pads, drugged on pain killers? We could reach them with a message of hope, a message of “there may actually be something wrong with other than just a painful period.” We could give them reassurance that it’s not all in their heads. There is nothing wrong with living with a “suspected endometriosis” diagnosis, especially if you’ve ruled out the biggies that could kill you. But the lap can confirm, open up pathways to better treatment, and can give you that “I told you so” leverage we endo sufferers need when we are laying curled up on the couch knee deep in tissues.

Please, let us stop this bickering and sign Jeanne’s petition. You can find it here:

Create Awareness & Understanding About Endometriosis

There is nothing wrong with more awareness and education when it comes to this disease - or any disease.

Let me finish by saying I do not discredit that either DWTS woman has endometriosis. I am not their doctor, nor do I have access to their personal medical records. I am just going off of how they are presenting their endometriosis to the public. As celebrities they have a responsibility to their fans to be responsible with their words. Before saying they have a disease or illness, they should make sure they have been accurately diagnosed with that disease. There are some diseases and illnesses that if a celebrity came out and said they had without a diagnosis, there would be a backlash - i.e. cancer. Could imagine if Christina Applegate had come out and said “Well, I felt a lump and knew it was cancer so I announced it as such before I had a mammogram.” No, she had a mammogram and a biopsy before she announced to the public that she had breast cancer.

People who suffer from diseases, especially chronic diseases, do not take it lightly when someone comes along and willy nilly says they too suffer from it without proper diagnosis. A doctor should always be cautious and add “suspected” or “likely” before a disease or illness until it is confirmed.

Related link (that contains MANY other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

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

Endometriosis Blog: Endometriosis Awareness In Puerto Rico And Endometriosis Facebook Groups

I received the following message from Issys Pouerie who runs Endometriosis Puerto Rico.

Issys and I "met" via the Facebook endometriosis support group Together We Can Cure Endometriosis started by CureTogether.

Issys recently emailed me back after I had emailed her to let her know that I have a Babel Fish translator on my blog for various languages, including Spanish:

She responded:

I will tell my group of the Babel Fish option for those that have trouble with English.

Let us know how we can help. Feel free to include/mention our group for those that speak Spanish.

Good luck and talk to you soon!!

Endometriosis Puerto Rico

Issys has a large online support group on Facebook (with over 700 members in Puerto Rico). Her group has helped a great deal in spreading the word about the following petition:

Create Endometriosis Awareness & Understanding

Please join us on Facebook at the links listed here for these two endometriosis groups:

Together We Can Cure Endometriosis started by CureTogether

Endometriosis Puerto Rico

Also, if you do not speak English, please use the Babel Fish translator in the right sidebar of this blog. It will translate this blog from English to the following languages:

Endometriosis support from English to Chinese - simp
Endometriosis support from English to Chinese - trad
Endometriosis support from English to Dutch
Endometriosis support from English to French
Endometriosis support from English to German
Endometriosis support from English to Greek
Endometriosis support from English to Italian
Endometriosis support from English to Japanese
Endometriosis support from English to Korean
Endometriosis support from English to Portuguese
Endometriosis support from English to Russian
Endometriosis support from English to Spanish

If you read this blog using the translator & decide to post comments please post a translator so that I'll be able to read your comments!

Thank you!

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

Endometriosis Blog: World Diabetes Day - November 14 (VIDEO INCLUDED)

My mom has Type II diabetes and I am posting here to draw attention to World Diabetes Day in response to a blog post about pre-diabetes and diabetes on The ICI Experience.



For more information about diabetes and pre-diabetes, please see:

"Monday, November 10, 2008 World Diabetes Day and my second appointment at the FFC, Part 1" on the The ICI Experience blog.

For a link to a video of a child's perspective of Type I diabetes, click here:

Children & Diabetes: Abigail talks about Type 1 diabetes and how it changed her life.

This video was courtesy of icarecafe.

Thank you.

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

Endometriosis Blog: Letters And Petition Sent To Oprah And The View To Create Awareness & Understanding About Endometriosis

Below is the letter I sent to Oprah. Since there is a character limit on emails to Oprah & since there is no option to include the petition as an email attachment, I snail mailed it.

A similar letter was sent to The View .

PLEASE KEEP ADDING SIGNATURES TO THE PETITION!!! I AM SUBMITTING NAMES NOW IN AN EFFORT TO GET A FEATURE ON ENDOMETRIOSIS TO AIR AS SOON AS POSSIBLE BUT THIS DOES NOT MEAN WE CAN'T CONTINUE TO ADD NAMES TO:

Create Endometriosis Awareness & Understanding Petition

Here's my letter to Oprah:

Dear Oprah,

For 26 of my 39 years, I have suffered symptoms of an illness called endometriosis. I have had 7 abdominal surgeries since 1992.

This illness affects an estimated 5.5 MILLION women in North America and 89 MILLION women worldwide.

The definitive way to diagnose a patient with endometriosis is to perform a surgical procedure called a laparoscopy. I had endometriosis for 10 years before I was finally diagnosed at the age of 23. Sadly, this type of lag between onset of symptoms and diagnosis is VERY common.

I was diagnosed in 1992 with endometriosis. I have participated in endometriosis support groups for 16 years. These have been immensely helpful sources of information, support, and resources. Through endometriosis support groups I have met so many strong, caring, empathetic, wonderful women.

Over the years, I have heard so many heartbreaking AND heartwarming stories from women with endometriosis. The heartbreaking stories have covered the impact endometriosis can have on women’s relationships, overall quality of life, career choices, fertility, self-esteem, and overall physical health. The heartwarming stories have covered the many ways endometriosis patients support each other, the ways family and friends show their love and support to patients, and the tales of doctors who respect their patients enough to take their symptoms seriously.

I recently started an online petition to create awareness and understanding of endometriosis. In the short time since I started this petition, women AND men from around the world have signed it. As of now, we have signatures from the U.S., the UK, Puerto Rico, Canada, Australia, and South Africa. I felt it important to write you now (versus waiting for more signatures to be added) because there has been a great deal of press lately for the two women from Dancing with the Stars who have been diagnosed with endometriosis: Lacey Schwimmer and Julianne Hough. These women were diagnosed within days of each other and many media outlets have reported about their diagnoses of endometriosis.

Unfortunately, some of what has been reported in the media about endometriosis (in relation to these two women) has been confusing or even misleading to the public. For example, multiple media outlets report that Lacey Schwimmer received a diagnosis of endometriosis. However, there is no mention of her having had a laparoscopy. In fact, she has not missed a single week performing on the show. Laparoscopy remains the only method for a definitive diagnosis of endometriosis. Julianne Hough’s laparoscopy took place the day AFTER she announced on Dancing with the Stars that she has endometriosis (and that she’d be having her appendix removed during the next day’s surgery). There are no media reports to indicate that she had had a previous laparoscopy. In fact, she was interviewed as saying that she’d had symptoms for the 5 years leading up to her recent surgery. So it would appear that her diagnosis was given PRIOR to the laparoscopic surgery she just had.

While there may well be more ‘behind the scenes’ to Ms. Schwimmer’s and Ms. Hough’s stories that might clear this confusion up, the fact right now is that the general public is hearing that these two women have been diagnosed with endometriosis WITHOUT THE BENEFIT OF HAVING THE LAPAROSCOPIC SURGERY THAT, TO DATE, IS THE ONLY DEFINITIVE MEANS OF DIAGNOSING THE CONDITION.

After hearing multiple media reports about the diagnoses of endometriosis for both women from Dancing with the Stars and hearing the mixed message that the public is receiving, I decided it was important to speak out about the FACTS on endometriosis.

That is why I started an awareness petition and that is why I’m sending you the link to this online petition sooner rather than later. I think it’s crucial to correct the record about endometriosis as soon as possible -- WHILE ENDOMETRIOSIS IS STILL BEING TALKED ABOUT IN THE MEDIA in the wake of the two Dancing with the Stars women’s diagnoses.

PLEASE see the link below to the online petition to “Create Awareness & Understanding About Endometriosis”. It contains 110 signatures & 49 comments to date:

Create Endometriosis Awareness & Understanding Petition

The comments on this petition are eye-opening, educational, heartbreaking, and compelling. At the same time that many of the petition comments break my heart, it is so wonderful to see not just endo patients speaking up but mothers, fathers, sisters, husbands, mothers-in-law, grandmothers, etc!!

It is hard to single any petition comments out because they are ALL so important and valuable. However, one remark that stood out to me and tied together just about all of the other comments was this:

***** “Knowledge is power” *****

One endometriosis patient wrote me pleading that I make sure this petition gets into the hands of someone who can help create awareness and understanding of endometriosis. I feel a responsibility to get this message out to the public.

All who have left comments on the petition seemed to echo this previous statement… that we need to get the petition into the hands of someone with the power and/or ability to help educate the public about endometriosis and to help not-yet-diagnosed endometriosis patients to seek out appropriate medical attention for this serious illness.

I ask your assistance in getting the FACTS about this illness disseminated to the public. If you would be so kind as to consider airing a segment on the topic of endometriosis, we would greatly appreciate it!

This illness affects up to 89 MILLION women. Yet, many women suffer in silence due to factors such as:

* Inability to find a doctor skilled in diagnosing & treating endometriosis

* Misunderstanding or lack of awareness about endometriosis and the symptoms associated with it

I have seen marriages that were strained by endometriosis (many resulting in divorce with endometriosis being a factor that led up to it) and I have met dozens of women who experience infertility and/or terrible pain. I have met women who are unable to follow their chosen career path due to the severity of their symptoms. (This by no means implies that endometriosis patients are not capable and hard-working!! In fact… many endometriosis patients I know personally, of those still physically able to work outside the home, have a tendency to overcompensate for their illness by being very high achievers and being exceptionally productive in the workplace).

Please see my blog on endometriosis and other chronic illnesses:

Jeanne's Endo Blog

Please consider airing a story on the facts about endometriosis. Creating awareness and understanding of this illness is SO important to SO many women and their loved ones!!!

Sincerely,

Please keep spreading the word about endometriosis. Please sign the petition if you have not already done so. Please encourage your loved ones to sign too (anyone wishing to create awareness & education about endometriosis is welcome to sign). The better we spread the word, the more signatures we'll get. If necessary, I can re-submit requests for endometriosis airtime in the future and I'll use the growing online petition when I do so!

Thank you!!

Related link (that contains many other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

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

Endometriosis Blog: "Lemonade Award" for Jeanne's Endo Blog

I am thankful to Mckay k of Living With A Chronic Illness for awarding my blog with the Lemonade Award.

This award is given to blogs demonstrating a great attitude of gratitude.

Living With A Chronic Illness is full of practical, helpful information. Her positive attitude despite great adversity is an inspiration. She consistently writes interesting, thought-provoking articles that touch many.



In keeping with this award's tradition, I will now honor 10 other blogs with the Lemonade award, as follows:

1. Being Chronically Ill Is A Pill

2. Endometriosis: The Silent Life Sentence

3. Fighting Fatigue

4. ICI Experience

5. In's & Out's of Endo

6. Jannie Funster: When In Doubt Go For The Fun

7. LEMON-AIDE: Living With Complex Chronic Illness

8. My Journey With Endometriosis

9. So Sioux Me

10. Yayastuff

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

Endometriosis Blog: Refugees United (Bloggers Unite, Blogging For Hope)... 'Bloggers Unite To Reunite Refugees' Event

While those of us who are chronically ill (with endometriosis and other chronic illnesses) face daily challenges, most of us are at least fortunate enough to have an idea of where our family and friends are if we wish to communicate with them and spend time with them. Most likely, few people reading this have been separated from their family members.

Unfortunately, too many people in the world are not as fortunate.

Today I'm blogging for Bloggers Unite: Blogging For Hope regarding the topic of helping refugees around the world.



There are many resources listed on the site above for information about organizations helping refugees:

UK Refugee Services

Lutheran Refugee Services

Aotearoa-New Zealand Refugee Services

United States Committee for Refugees and Immigrant Children

Church World Service Immigrant & Refugee Program

Women's Commission for Refugee Women & Children

For more information about today's worldwide blogging event, please see this site - Bloggers Unite: Blogging For Hope.

I've included a passage from the Bloggers Unite site:

Why Should You Participate?

The bloggers of Bloggers Unite have created what is the only global blog initiative designed to harness expression in support of human rights and issues in need of highlight. Refugees United is the only online, highly secure and anonymous possibility of refugees to reconnect with family.

The powerful and dynamic gathering of bloggers, from ordinary people to NGO's and aid agency representatives, is an unprecedented approach and effort to bring focus on the millions of refugees suffering uncertainty and atrocities every day. The blogosphere is a powerful way to raise awareness and aid. Knowledge can bring change.

As a blogger, you are in key position to harness and rally energy behind this cause, by sharing information about the plight of refugees. The ongoing problem of people torn from their homes is something that should, and must, concern us all, in order to find a common solution and bring back life and dignity to the millions suffering. So, please join us, and thousands of other bloggers, by participating in this important cause.

I hope you'll join me in learning about this worldwide problem. Please see sites listed above for more information.

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

Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View (UPDATED)

UPDATED 11/9/2008 at 5:15 pm

A letter to Oprah and The View has been written. It will be sent, along with the endometriosis awareness petition, to the two shows soon. Please keep spreading the word about the petition...

Again, it's not to late to sign the endometriosis awareness petition!! Feel free to write your own letter to these shows. The more voices they hear from, the better our odds for getting facts about endometriosis covered!

See the link below for the online petition. Please encourage your family and friends to sign it as well.

Create Endometriosis Awareness & Understanding

The more people we get to sign the petition the better.

See related links:

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.

Endometriosis Blog: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization

Today I had the pleasure of chatting with Penny Allen, Medical Writer for the Interstitial Cystitis Association.

Ms. Allen interviewed me about bladder instillations and self-catheterization after reading on my blog that I do this at home to treat my interstitial cystitis.

I was diagnosed with interstitial cystitis by my pelvic pain specialist after having a cystoscopy and hydrodistention while under general anesthesia. (I had one previous cystoscopy and hydrodistention while awake. I don't recommend this)!

For my IC diagnosis, my doctor performed the cystoscopy and hydrodistention while I was under anesthesia for a laparoscopy to remove endometriosis.

After my diagnosis, my doctor prescribed a combination of an oral medication and bladder instillations. The bladder instillations are a method of putting medications into the bladder by self-catheterizing. My doctor's office taught me how to self-catheterize and this is something I do at home.

When my doctor first brought up the idea of self-catheterizing at home, I was a bit taken aback. I couldn't imagine doing it myself versus going in to the doctor's office to have it done.

As my doctor's office pointed out, if I learned how to administer these medications at home I wouldn't need to drive in to their office, pay a co pay for each bladder instillation, or conform to the doctor's office hours. I could do the bladder instillations at home when I needed them (following the doctor's directions on frequency of bladder instillations, of course). Doing them at home would be more convenient and less expensive. I wouldn't need to "commute" 45 minutes each way to the doctor's office to get the bladder instillations.

Ms. Allen is writing an article about bladder instillations and self-catheterization for the Interstitial Cystitis Association newsletter.

When I was diagnosed with interstitial cystitis, I learned of the Interstitial Cystitis Association through my doctor. I joined the ICA and received informative newsletters about IC. I found these newsletters very helpful.

Ms. Allen interviewed me because she wanted my input about the process of self-catheterizing to administer bladder instillations and the results I have had from bladder instillations to treat interstitial cystitis. I explained that I used to have SEVERE urgency and frequency.

Prior to diagnosis and treatment for IC, I was used to trekking to the bathroom about every 15 minutes during my periods and the remainder of the month I was going about once an hour.

Since taking the oral medication combined with the self-administered bladder instillations, my frequency has decreased to about once an hour during periods and once every 3 hours at other times in my cycle. That's quite an improvement!!

Many IC patients may not be aware of this treatment option. Others may be fearful of self-catheterizing. I have to say that once I got used to doing bladder instillations (which wasn't as difficult as one might think), I appreciated the convenience of doing them at home.

Hopefully, spreading the word about this helpful treatment option can help other IC patients.

After 12 years seeing 2 urologists and having 3 cystoscopy procedures come up negative, I was finally properly diagnosed by my pelvic pain specialist on the 4th cystoscopy. I am grateful for the relief my IC treatment has provided.

For a blog about interstital cystitis, see IC Disease:
Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions

For more information about interstitial cystitis, contact the Interstitial Cystitis Association. I found becoming a member of ICA helpful and informative.

It was a pleasure to speak with Ms. Allen of Interstitial Cystitis Association today about bladder instillations. My regimen for treating IC (bladder instillations plus an oral medication) has significantly decreased my urgency, frequency and pain issues and has improved my quality of life. For IC flare-ups, I can increase the frequency of my bladder instillations as per my doctor's orders.

For more information about interstitial cystitis, please refer to previous articles I have written about IC. The link listed below will refer you to NUMEROUS posts about interstitial cystitis.

Related link:

Wednesday, October 22, 2008 Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

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

President-Elect Barack Obama's Election Night Speech And My Hope For Healthcare To Be A Top Priority

After making a conscious choice not to get into partisan politics on this blog, I have thought and thought about what to write for today's post. I had concluded that it just wouldn't seem fitting for me not to mention last night's election but just wasn't sure exactly what to write. I finally decided that the most appropriate thing for me to post would be not my words but the words of the next President of the United States, Barack Obama.

Regardless of what your political beliefs are, who you voted for, what party (if any) you are affiliated with... one thing has been decided. Barack Obama will be the next President of the United States.

So here are his words from Election Night on November 4, 2008:



While there are a great many issues that President-Elect Obama will need to address, my hope is that healthcare will be a top priority. Those of us who are chronically ill know how important a topic this is.

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.

Have You Voted Yet?? :) :) :)

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

Don't Forget To Vote Tomorrow!! :) :)

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