"Jeanne's Endo Blog": Guest Blog - Roberta's Twenty Plus Year Rollercoaster... Roberta's Experiences Following Hysterectomy...

The following Guest Blog post was written by my close friend Roberta. (She's camera shy so there won't be a picture for this Guest Blog). I met her through my local endometriosis support group. (For that group - which I started in 2001 - Roberta was Co-Leader with me for part of the time). I have learned an enormous amount from Roberta. Her generosity with sharing her wisdom and introducing me to new modalities is unmatched. I treasure her friendship and I am honored that she agreed to write a Guest Blog post. The story below is an excellent summary of her difficult journey. There is so much more that has gone on behind-the-scenes. Roberta is one of the strongest, most thoughtful, resilient, caring people I know. I know her story will help many. Roberta has training in everything from Reiki to colon hydrotherapy to homeopathy. She works harder than anyone I know to be well. She follows rigid diets (not weight-loss diets... I mean diets for health reasons) that I do not envy. She does physical therapy exercises and Chi Nei Tsang at home. She puts into practice what she learns. She doesn't just talk the talk. She walks the walk. Roberta is truly one of the most thoughtful people I have ever met. She uses every ounce of adversity she has been through to help others by sharing her experiences. She is one very special woman!

My 20+ year ride on a Roller Coaster - by Roberta

At the age of 30 I was a healthy, vibrant, energetic and happy young woman. I had just gotten married for the second time and looking forward to adding to “our” family. I thank God that I was blessed with a daughter from my previous marriage.

I had never experienced many problems with my period. I had at times had some discomfort but it never lasted long nor did it incapacitate me in anyway. That was soon to change. All at once my pains were so intense that I was vomiting and having diarrhea every month. The pains would last from ovulation until several days into my period. Finally after many months and doctors and multiple tests my gynecologist suggested that I have a laparoscopy. I was undiagnosed for 1 more year. The doctor who did the procedure didn’t bother to tell me that I had endometriosis.

I quickly fired that doctor and found a doctor in my area that “specialized” in endometriosis. Confirming the diagnosis he prescribed Danocrine. Unfortunately, Danocrine can only be used for short periods of time before women develop masculine side-effects. I took Danocrine for 1 year had another laparoscopy and nothing had changed. Upon stopping the Danocrine, the pains came back with a vengeance. Two weeks out of every month I was very ill. At 34 I felt I couldn’t take the pain and sickness any longer. I decided to get the complete hysterectomy-after all isn’t that the answer to endometriosis?

I felt fine, I thought. I was put on synthetic hormones immediately and just wanted to go on with my life. Within a year I was having significant muscle pains throughout my body. Additional testing diagnosed me with fibromyalgia at 36. I continued to work part time and take care of my family and home the best I could. Then at 39 my doctor decided that my blood level estrogens were too low so he prescribed a higher dose. Within 2 weeks the estrogen killed my gall bladder so I had my gall bladder removed. I didn’t realize that gall-bladder removal would be so problematic for my digestive system.

At 44 - I have now been diagnosed with leaky gut syndrome. Anything I ate caused me great distress. It took one year to get a food allergy test that concluded I was reactive to almost every type of food. I had lost 30 lbs. in 4 months and looked very ill. After a year of struggling with the leaky gut syndrome I developed chronic fatigue syndrome. The chronic fatigue produced severe, constant flu like symptoms lasting for months.

At 46 - I started the journey of severe hormone imbalance. I developed chronic pelvic pain and for three months I felt like I was delivering a baby. My doctor prescribed a very special type of physical therapy-called a pelvic pain specialist, which provided some relief. My doctor then suggested bio-identical hormones -I got much worse. Finally my husband suggested that I stop the hormones completely-I did. While I felt better initially I still was in need of something else. At just barely 48, I went to my naturopath and was prescribed a homeopathic that helped immensely. It took only 2 months time to get my chronic pelvic pain under control. Believe me when I tell you that YOUR hormones are unique to you and cannot be duplicated in a test tube.

At 52, while having my routine mammogram (something I have done for 20 yrs. after being diagnosed with fibrocystic breast disease) the doctor found a suspicious lump. I returned in a few weeks for a biopsy - I was diagnosed with breast cancer. My lumpectomy and radiation were completed by July 2008.

I feel compelled to write about endometriosis and the over use of hysterectomies in our culture. I certainly cannot say that it could be scientifically proven that my breast cancer, fibromyalgia, chronic fatigue, and leaky gut were a direct cause from the endometriosis and my choice of a complete hysterectomy. However, in my heart of hearts I know that it is so. When we introduce artificial hormones at such an early age we create a huge imbalance of our entire body since hormones reside in every cell not just our reproductive system. I feel that it is absolutely imperative for women under 45 to keep their uterus and ovaries unless it is a matter of life or death. I truly believe that the over use of synthetic hormones is a very dangerous thing.

I have tried to condense my story. As I looked back there were many steps and processes that I didn’t include. The last 20 years of my life has been a very complicated journey. One thing that I try to emphasize to women who are considering hysterectomies is to understand that after a hysterectomy your libido is almost completely gone. There are many women in my family that have had endometriosis and have chosen hysterectomies for their “cures”. All have agreed that if they had known how negatively they would feel about intimacy and love with their husbands, boyfriends or partners that they wouldn’t have undergone such an invasive surgery. You can’t get it back-it’s permanent!!

Now I am 53, and I have fully embraced integrative medicine-(i.e.- acupuncture, homeopathics, supplements, organic foods, massage therapy, herbs, Chi Nei Tsang-chinese abdominal massage). They have been part of my life for the past 10 yrs. These modalities make my syndromes bearable. Yes, it is financially a bit more expensive but emotionally, physically and spiritually it is a bargain. While the initial choice of having a complete hysterectomy appeared to have many benefits- I have learned the hard way that for me it was the most physically debilitating life alteration experience. Personally, I believe that my choice of a complete hysterectomy significantly precipitated the downward spiral of my health.

Hopefully, I have planted a seed of doubt about hysterectomies being a cure all for endometriosis. Indeed they are not. There are many avenues available at this time to assist you in making a more informed decision regarding the short and long-term outcomes of a complete hysterectomy. Use all the complementary medicines that you can find and afford to help alleviate or decrease your undesirable symptoms. It will be worth it in the end. As well, talk with many women who have had the surgery. Believe what they say-they are living the truth.

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

"Jeanne's Endo Blog": Check Out My Newest Video Here And Then Please Rate It & Comment On It At My YouTube Channel! (Vlog #4)

If you have not yet signed the endometriosis awareness petition, please do so to support the 89 million women/girls worldwide who have endo, at this link:

Endometriosis Awareness Petition

See Endochick's blog regarding our next media target: The Today Show. Let's get endometriosis FACTS featured on Today. We're trying to get Meredith Vieira's attention for a story.

For more info (including my comments back to her blog post), please Endochick's blog:

Endometriosis: The Silent Life Sentence

Here is the still picture I promised of the Japanese-style acupuncture needles:



With the penny there for perspective, you can see how tiny those needles are in circumference. Each needle looks about the thickness of a "cat's whisker", as my acupuncturist puts it.

The needles do not hurt.

I wish I had not feared the needles. I wish I had started acupuncture years earlier than I did! I was afraid of the needles. There is nothing to be afraid of.

Not only does acupuncture help my pain and other symptoms but it is RELAXING! I tend to "zone out" in acupuncture sessions... I may not be "asleep" but I definitely am not fully conscious either. (There are times when I do fall asleep completely). When I first started acupuncture, this was not the case. Once I had been going to acupuncture for awhile, I became more relaxed with each visit. Now, I could walk in all wound up and within a few minutes... acupuncture can help me feel relaxed and peaceful. It is truly amazing!

As I mentioned in the video, I get Japanese acupuncture that is a combination of Manaka and Meridian styles (with Japanese needles). I want to get the word out about the tremendous benefits of acupuncture and allay any fears people might have regarding needles. Acupuncture does not hurt!

Ratings & comments on my videos can be made at the link below:

You can also choose to subscribe to my YouTube channel.

By the way, the strange noise in the background while I'm talking on this video is the sump pump! It's flood season... :)

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

"Jeanne's Endo Blog": PETITION: A Moment Of Your Time Can Support The 89 Million Women/Girls With Endometriosis!! Plus, Check Out My YouTube Channel!

Great news! We are nearing 300 signatures on the endometriosis awareness petition!

Isn't that wonderful?

If you have not yet signed the petition, please take a moment to do so. The more names we get the better. When we approach major media outlets about getting endometriosis facts covered, we submit this petition along with our letters and emails.

According to the Ohio State University Medical Center:

"It is estimated that between 2 percent and 10 percent of American women - or 5.5 million women and girls - of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility".

Here's where you can sign:

Endometriosis Awareness Petition

Interested in checking out my videos? Here's the place:

Jeanne's YouTube Channel

I am grateful for any comments and ratings you can leave on the YouTube videos and would love it if you'd subscribe to my YouTube channel.

Thank you!

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

VIDEOS --- "Jeanne's Endo Blog": Now Playing At A YouTube Channel Near You... Endometriosis and Acupuncture...

Yesterday I began promoting my YouTube channel. I would deeply appreciate if you'd take a few moments to check it out. Once there, you have the option to leave comments on specific videos, rate the videos (1 star is worst, 5 is best), and/or subscribe to my YouTube channel.

Any feedback you can provide (comments or ratings) would be greatly appreciated... and I, of course, would be honored if you decide to subscribe to my channel.

So far, topics covered are endometriosis and acupuncture but eventually I will cover other topics... primarily chronic illness topics.

I'd be honored if you'd check it out:

Jeanne's YouTube Channel

Thank you!

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

'Jeanne's Endo Blog': How Do I Thank Jannie Funster For Her Hard Work?

Wow! I got an email today from my buddy Jannie. I don't know Wordpress (yet!) but I am guessing that adding a petition link such as the one Jannie has added would be a challenge. She didn't just link to the petition any old way. Check out her blog at the top right "under the eye" to see what I mean...

Click here to see Jannie Funster's awesome petition link with an eye-catching visual!

Is that cool... or what?

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

'Jeanne's Endo Blog' Thanks Tammey Of The Yahoo Group "LupusAutoimmuneSisters"

Sometimes people are just plain nice.

Recently, I met a woman on twitter named Tammey. We exchanged several messages and she was very friendly. So, I asked her the same question I ask everyone these days, "will you sign my petition?"

She kindly agreed to do so, despite the fact that she does not have endo. Then she volunteered to share the petition with her LupusAutoimmuneSisters support group and ask them to sign it too!

Twitter users, please send her a thank you tweet: Tammey

Sometimes people are just plain nice.

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

'Jeanne's Endo Blog': See What's Buzzing Over At "IC Disease"

I know of women with endometriosis who have had surgical mesh. I thought this article might be of interest to some of you...

See this article from Sandy at IC Disease:

Severe Complications with Surgical Mesh for Gynecological Surgeries

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

'Jeanne's Endo Blog': Sample Letter To The Media From "My Journey With Endometriosis"

My Journey With Endometriosis is one of my favorite blogs. When I asked readers to contact Mariela Azcuy, Senior Associate Director of PR for Meredith Corporation (see related links at the bottom of this post for much more information), I was copied in on the following fantastic letter! With permission, I am reprinting this letter here as a "sample letter". Some of you may recall seeing a previous "sample letter" posted on my blog. (That one was written by Endochick).

These sample letters are well-suited for contacting others in the media besides Ms. Azcuy as well. These letters are being shared to inspire you to write in with your own story and your own personalized request for coverage of endometriosis facts in the media.

This particular letter was sent to Ms. Azcuy and I was copied. It is a fantastic glimpse inside the tumultuous world of one endometriosis patient. Let's hope the media is listening. (I should note here that Ms. Azcuy was kind enough to acknowledge that she did receive this letter. We appreciate Ms. Azcuy's assistance in getting our requests to the editorial staff and health writers at Meredith Corp.)

Dear Ms. Azcuy,

My name is _______, I’m 28, and I am living with stage IV endometriosis. I read a copy of the article from More magazine, which was forwarded to me by Jeanne from Jeanne's Endo; and, I just wanted to write to express my interest in endometriosis being covered in a more factual manner than it has recently in main stream media.

My case is a little different from most that suffer. The time to diagnosis is something around an average of 9 YEARS. I cannot imagine having suffered that long without answers! My disease actually presented itself in GI manifestations (a few months after coming off birth control for the first time in 9 years), making it pretty tricky to pinpoint a cause. I was bounced from appointment to appointment and medication after medication. After a few months of the back and forth, I was sent for a CT scan because it was suspected that I had appendicitis. At this point I was very ill... I lost about 20 lbs in a month or two because of my pain and contrast GI symptoms. I also noticed during this time that my monthly cycle was also becoming unbearable.

My CT, luckily, showed a large cyst on my right ovary, and some colitis. I say luckily because endometriosis does not usually show up on a scan. But, because I had a cyst…I was finally headed in the right direction. Less than a month, and three ER visits later, I had my first laparoscopy. My case was so bad that when they put the scope in to examine my abdomen, all they could see was one giant mass-all my organs were sticking together. They attempted to get what they could while I was in surgery, but, unfortunately a lot of the colon adhesions had to be left behind for safety reasons.

After diagnosis I was ready for treatment. But, I soon discovered…there was no real treatment for this disease. I took a medication called Lupron Depot which put me into a medically induced menopause. Believe you me... at 28, that was pretty traumatic. I knew the drug would only be a temporary fix, and, I took a big risk taking it. SO many women have had some seriously ill effects from this drug…but, I needed relief. Also, I wanted a chance to conceive.

My husband and I had been trying for some months prior to my diagnosis. After surgery, I learned that we had a high likelihood of having a difficult time conceiving. We sought experience from a reproductive endocrinologist (RE) after I was done with the Lupron. We have been trying now for almost 2 years with no success, even now with some fertility drug assistance.

In 4 weeks now I am facing my 2nd surgery in 13 months. I have another cyst on the same ovary (called an endometrioma, and, unfortunately their nature is to grow back... no one knows how fast or furious). It is now 6 CM, and, the time has come to remove it. I have a team of two specialists this time around-an RE and a GI surgeon. The goal of this surgery is to get as much of this cyst with as little of my ovary as possible, and, to hopefully clean my colon adhesions without having to have a resection. After this surgery, my husband and I will be going through IVF.

When I got married 3 years ago, I never imagined the “In sickness” part of the vows would happen so quickly. It has been a very stressful time for us in our early married years. But, we have overcome the trials and tribulations, and, I know we will come out of this better, stronger people. I know some people are not as lucky as I am to have such a wonderfully caring and devoted husband. I know endometriosis can ruin lives and marriages.

I am reminded constantly of my battle with endometriosis. My most severe symptom, still, is constant nausea. I’ve learned to cope finally, but, it’s been difficult. And, some days are easier than others.

Endometriosis is such a misunderstood illness. I must say, before my diagnosis, I thought it was a pain disorder. It is so much more about pain. It’s physical and emotional pain. It’s the pain of knowing that I may one day not be able to have my own children…to look into the eyes of a child and know it’s mine. It’s the pain of wondering if I am going to have to have surgery every year... or, wondering when it’s going to come down to a hysterectomy (even though this is not a recommended treatment). It’s the pain of wondering, what’s next in this “saga” of a disease.

I am hoping that you would consider doing an article on endometriosis for a future publication with the intent of getting the facts about the disease widely distributed. It is my hope that one day, young women may not have to go several years without having a name to call their illness, and won't have to go to several different doctors and being made to feel that what they are experiencing is "in their head" before they find hope for relief. It is my hope that there would be a call for more research and more intense study in the medical field. I would invite you to help in making this a reality.

Best Regards,
____________

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Thank you to My Journey With Endometriosis for giving me permission to share this letter in an effort to inspire others to write in requesting endometriosis coverage. Her positive attitude despite such adversity is inspirational!!

Here is Ms. Azcuy's contact information if you wish to request mainstream print media attention for endometriosis facts:

Mariela Azcuy
Senior Associate Director of PR
Ladies' Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017
212.551.6955
mariela.azcuy@meredith.com


Related links:

Link 1 (VIDEO):

VIDEO: Monday, February 16, 2009 Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

Link 2:

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

Link 3:

Monday, February 23, 2009 "Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!

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

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

It is March 1, 2009.

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

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

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

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

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

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

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

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

Create Endometriosis Awareness & Understanding

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

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

#endo

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

Also...

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

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

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

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

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

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

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

Jeanne's Endo Blog: How MORE Magazine’s Chronic Illness Article Knocked My Socks Off & How Happy I'd Be If We Can Work Together To Get Endo Covered!

More magazine has a superb February 2009 article!!!! Read on...

Finally! I am posting my first vlog, as I have wanted to do for months. I'll be very anxious to hear your feedback. Some of you may ask, what's a vlog? Here is a description.

My first vlog entry talks of my intense desire to get the facts about endometriosis featured in mainstream media magazines. I'd like to make the hundreds of voices on our Create Endometriosis Awareness and Understanding petition heard!



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

As promised, here is the contact info for writing to request endometriosis coverage:

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

mariela.azcuy@meredith.com

Please first join me in THANKING Ms. Azcuy for sharing the February 2009 More magazine article, "Ill In A Day's Work"!! It is phenomenal!!

In addition to thanking Ms. Azcuy for sharing the amazing article linked above (make sure you tab through and catch all 7 screens for this article), I wanted to request that one or more of her magazines consider printing a story on endometriosis.

With 89 MILLION women and girls with endo worldwide, we need to get the facts about endo out to the public, to undiagnosed patients in need of guidance on how to get diagnosed, and to patients to let them know they are NOT alone!

PLEASE HELP CREATE ENDOMETRIOSIS AWARENESS & UNDERSTANDING BY DOING THE FOLLOWING:

(1) Sign the awareness petition linked above. Ask your friends and loved ones to sign it too. ANYONE wishing to support endo patients may sign it. The more people sign, the better our odds at getting endo featured. Write to Ms. Azcuy requesting media print coverage of endometriosis. Time is of the essence!

(2) If you have a blog, please blog about this topic and link back to this blog post!

(3) If you don't have a blog, please be persistent when asking friends and loved ones to sign the petition. (The petition has been emailed to Ms. Azcuy already but let's get more names). Also, you don't need a blog to write to her asking for endo coverage! Frankly, this could be our chance to finally put that petition to use. Too many women are suffering in silence.

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89 MILLION women & girls worldwide with endo... the numbers are just staggering)!

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Thank you for your support! Let me know what you think of my first vlog, please!!

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

Amanda From The 'Dream Of Living' Blog Gave Me An Award...

Amanda of Dream Of Living kindly gave me this award:



Here is what this award is all about...

"This blog invests and believes in PROXIMITY - nearness in space, time and relationships. Blogging establishes friendly neighborhoods linked around the world".

I had the pleasure of "meeting" Amanda relatively recently. Amanda is an endometriosis patient who lives in Europe. She has written a blog for several years but just recently began blogging about her endometriosis. Her endo blog posts are candid, emotional, raw, and wonderfully detailed. She beautifully describes the challenges endo poses in her life and how she copes with them.

I am honored that Amanda has given me this award. I think the notion of proximity in the context of friendly blogging neighborhoods around the world is a perfect match for the link between me (in the U.S.) and Amanda (in Europe). I feel very connected to her by endometriosis and our similar experiences with it.

Amanda writes beautifully and I'm so happy that we found each other on this vast space called the Internet.

Amanda has left some thoughtful comments on my blog and her endo blog posts really delve into the emotional toll endo can take on a patient and her loved ones.

Please check out Amanda's blog for some great posts on endometriosis!

Dream Of Living

Thank you, Amanda!

Now, I have broken the rules and will not be passing this award along to the number of bloggers I'm supposed to.

Not only am I too tired to "follow the rules" but I don't want to pass this award along to someone else who will feel overwhelmed at having to select X number of other blogs for this award.

I am going to pass this along to two of my Canadian endometriosis blogging buddies.

If they are too tired to post the award or pass it along, that's OK! I'm going to list their blogs here because they are worth your time to check out:

Squidgeaboo's Endo Blog

Endometriosis: Facing The Battle Head-On

If they choose not to post the award/pass it along (because I know they both have full plates right now!!!), that's OK. This post will still, hopefully, send some readers their way.

My purpose for selecting these two particular blogs is simply because I love these blogs, I love these bloggers, and I'd love to send some traffic to their well-written blogs!

So, please check out the blogs of Amanda, Melissa, and Squidgeaboo. They all have important things to say about endometriosis and living with chronic illness.

Take a peek and see why I like them so much! :)

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

VIDEO: 'Jeanne's Endo Blog' -- Any Patient Or Caregiver Who Deals With Chronic Conditions Can Probably Appreciate This Fantastic Video!

As I am far too tired to write a post, I decided it was high time to post a video. Loyal readers of this blog may recognize it from when I posted it months ago (or may have seen it in the YouTube video "slideshow" located in my blog's right sidebar).

Just because a condition isn't visible doesn't mean it doesn't hurt!!

(Video posted on YouTube by "booknhorsefreak" on October 10, 2007)

When I first saw this video, it made me cry and gave me chills. When I just came across it again (months later), it did the same thing to me. Whatever condition(s) you may have, you will probably relate to this video on some level. Between the gorgeous pictures, the perfect words that accompany them, the way this whole video just resonates for patients and caregivers alike, and the hauntingly beautiful music on the clip (sung by Natasha Bedingfield)... I have a feeling it will move you as it did me!

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

Jeanne's Endo Blog: Endometriosis Patients Are At Increased Risk For Breast Cancer... Have You Had Your Mammogram?? (UPDATED With Resources)

Due to family history (benign lumpectomy in first degree relative) and my personal, long-standing history of fibrocystic breasts, I received my first mammogram at age 37. It was normal. I was advised to return in 3 years. I just turned 40. So it was time for my next mammogram. A few days ago, I had one. It was normal. I thought I'd write a blog post about breast cancer here because research shows that women with endometriosis are at increased risk for certain types of cancer, including breast cancer.

Update added here:

UPDATE:

Addititonal resources...

Department of Health and Human Services, Centers for Disease Control and Prevention (National Breast and Cervical Cancer Early Detection Program)

Susan G. Komen for the Cure “Early Detection and Screening”

See below for more details...

Excerpt below is taken from this link from the Endometriosis Association (EA's Research Page - "Environmental Health Watch" Section):

"This landmark study has been followed by other research which supports these findings, including recent studies which reveal that women with endometriosis and their families have a greater risk of developing breast cancer, ovarian cancer, non-Hodgkin's lymphoma, and melanoma".

This public service announcement was posted on YouTube on June 19, 2008. Here is its description: "Powerful new breast cancer psa using showing the devastating effects of breast cancer from a male point of view from Serve Marketing"

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January 12, 2009

NEW NEWS STORY: MEDICAL BREAKTHROUGH IN ENGLAND:
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CBS News Story dated January 12, 2009: "A medical breakthrough in England could help keep the breast cancer gene from being passed on to future generations. Teri Okita reports".

This is info about the genes discussed in the video clip above:

BRCA 1 and 2: a pair of genes involved in breast cancer

Have you had your mammogram?

Related links:

TUESDAY, DECEMBER 16, 2008 Endosulfan Pesticide Banned in New Zealand: Endometriosis, Infertility, Breast Cancer & Pesticides...

THURSDAY, DECEMBER 4, 2008 Phthalates And Other Toxic Chemicals... What Are They And Why Should We Care??

TUESDAY, OCTOBER 14, 2008 Endometriosis Blog: The Increased Risk Of Breast Cancer For Endometriosis Patients

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

A Tori Amos Music Break For Healing, Quote Of The Day From 'The Foundation For A Better Life', And Also A Bit Of RAINN...

Dear readers,

It has been about a month since my last Tori Amos post. More importantly, I need a mental health break and regular readers here know that means I need to hear Tori Amos' music!

All of the turmoil lately (see previous post) regarding victimizing endometriosis patients has me very upset!

Tori Amos herself has endometriosis.

When I get upset, I reach for Tori Amos' music! It heals me.

In honor of the winter season we are in, I went searching for a video clip of Tori Amos singing the song "Winter".

Boy, did I find a great one!! This song is 17 years old. You can find it on the Little Earthquakes CD. It's a soothing song and a real treasure for calming down!



-- Tori Amos (musician, singer, songwriter, pianist)

Click here to see the lyrics for this beautiful song, courtesy of Sing365.com

On a much more serious note, Tori is a strong advocate for women. Her work with RAINN: The nation's largest anti-sexual assault organization (One of “America’s 100 Best Charities" — Worth magazine) helps many women!

Here are some statistics about sexual assault...

Statistics from RAINN

By the way, Tori Amos was sexually assaulted and helps women with her support of the RAINN organization.

Related links to my numerous Tori Amos "mental health break" posts are below.

Just click the link to reach post with other links:

Friday, December 5, 2008 Adversity, Challenges, Frustration And The "Secret To Life" According To Tori Amos...

I thought that following a mental health break of Tori's music & lyrics about winter and a much more serious link to the RAINN organization that I would wrap up today's post with a quote.

Here is the Foundation for a Better Life's Quote of the Day

“The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination.”

—Don Williams, Jr. (b. 1968); novelist and poet

Through the twists and turns of your life, try to find time to relax.

At the same time, be aware that there are helpful organizations like RAINN in times of crisis.

If you have been sexually assaulted or abused, seek help!!!

Let's appreciate Tori's gorgeous music AND appreciate her advocacy on behalf of sexually assaulted women.

Related link regarding protecting your personal health information:

WARNING

Ladies, let's protect ourselves from harm. Protect your personal information!!

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

WARNING To The Endometriosis Community Regarding: "Dr. Gregory Smith" {UPDATED}

Melissa has posted this update to her blog. I believe it sums up the importance of staying vigilant...

"Update: As many individuals have reminded me that this individual might be either "borrowing" or faking a name, I am editing the post to reflect that no one knows for sure what this person's "real" name might be. It is important to take caution in all of your interactions with others, and don't be afraid to ask the tough questions when you have them. As always, the law says that we are innocent until proven guilty. However it is important to alert others to the potential dangers that are out there within the endo community".

-- Melissa Ralston (Leader of "Goddesses of Endometriosis" Yahoo Online Support Group)

Please see Melissa Ralston's post about "Dr. Gregory Smith":

"WARNING to the Endo community: Dr. Gregory Smith"

Warnings have been posted on Facebook and Yahoo online endometriosis support groups

There are individuals who prey on people who are ill. Let's protect ourselves from such individuals as best we can!

See Melissa's blog post above for more details, please.


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UPDATE FOR STAYING SAFE:

PLEASE SEE RELATED STORY ON ENDOCHICK'S BLOG.
IT CONTAINS GREAT INFORMATION FOR PROTECTING YOURSELF ONLINE!

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

Endosulfan Pesticide Banned in New Zealand: Endometriosis, Infertility, Breast Cancer & Pesticides...

Do you have endometriosis, infertility, or breast cancer? Then this post may be of interest to you.

I am currently reading a book called Silent Spring (for information regarding this book, please see the environmental section of the right sidebar of this blog).

It talks about a number of things including pesticides. I am about 2/3 of the way finished with this book and I look forward to telling you more about it in a future post.

Interestingly, I just last night received a Google alert for endometriosis regarding a pesticide called endosulfan that has been banned in New Zealand.

Here is the Google alert I got that was flagged for the key word "endometriosis":

The New Zealand Herald: Cancer group delighted with ban

The reason this is particularly interesting to me is that the Silent Spring book I'm currently reading was written decades ago and covers the dangerous effects of pesticides, insecticides, and herbicides.

ALL THESE YEARS LATER, SUCH TOXIC CHEMICALS AS THOSE WRITTEN ABOUT IN SILENT SPRING ARE STILL IN USED IN SOME PARTS OF THE WORLD.

It is alarming that the warning bells of Silent Spring were not heeded and that chemical companies' profits appear to have won out over public health, the well being of the planet itself, and common sense. Rachel Carson's prescient story of the profound impact of such toxins is mind-boggling to me.

Endosulfan has been banned in many countries as per the preceding wikipedia link.

Per the wikipedia entry on endosulfan, it is registered for agricultural use in the United States.

Here is an excerpt from the endosulfan wikipedia entry:

Health effects

Endosulfan is one of the more toxic pesticides on the market today, responsible for many fatal pesticide poisoning incidents around the world [see the wikipedia entry for footnotes]. Endosulfan is also a xenoestrogen — a synthetic substance that imitates or enhances the effect of estrogen — and it can act as an endocrine disruptor, causing reproductive and developmental damage in both animals and humans. Whether endosulfan can cause cancer is debated.

For more information on endocrine disruptors, see the "Our Stolen Future" website.

This book is next on my reading list and I plan to review it in the future.

After numerous quotes from and references to this book on this blog, I am finally going to read it in its entirety! (See book info in right sidebar of this blog).

First, I need to finish reading "Silent Spring"!

Related articles:

There are numerous articles that have talked about some of the topics mentioned in this post. For more info from past posts, please use the search engine located in the top left corner of this homepage. Type in your search word and then just click search to be routed to previous articles.

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: 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!

*************

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.

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

++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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: 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.