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11/14/2008

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.

14 comments:

Jannie said...

Thank you for this guest post.

Very well stated.

I just left a comment on Endochick's blog and will reiterate here I'm so glad she listed many other conditions that may mimic the symptoms of endometriosis.

We do owe it to women everywhere to get correct diagnoses.

And hope woman gets the health care she deserves.

Thank you!!

Jeanne said...

Jannie,

Endochick's story really touched me.

What happened to her sister must have been so scary... Having had cancer myself (not cervical), it really moved me to read what her sister went through.

I thought that this real-life example really captured the importance of getting a proper diagnosis in order to obtain proper treatment.

The list Endochick compiled of conditions that have symptoms that can sometimes be mistaken for endometriosis was impressive, wasn't it? I thought that was quite a list!

Yes, getting diagnosed properly is so important for being able to obtain appropriate treatment.

Self-diagnosis of endometriosis is just not possible. Family history and symptoms can throw one off track, as happened to Endochick's sister.

Thank goodness she saw the doctor in time to find out the real reason behind her problems.

Jeanne

Jannie said...

Amen to that last sentence in your comment, Jeanne!

And yes, it was a really impressive list, opened these eyes even further to all kinds of health conditions women can have.

Thinking of you and hope you are well today.

Jeanne said...

Jannie,

It's amazing how many conditions can present with similar symptoms...

I hope you're doing well today too. Sometimes I'm amazed at how quickly the weekend flies by. :)

Jeanne

Yaya said...

Thank you for sharing your story. And thank you for pointing out why a lap is the only way to confirm the diagnosis of endo.

Jeanne said...

Thanks Alicia!

Jeanne

Maggie May said...

i agree that pathology is important any time your doc. is removing tissues from your body they should be checked-

great information.

Jeanne said...

Maggie May,

Thank you so much for your positive comments!!

I think Endochick's Guest Blog post here really "hit home" some of the numerous reasons that it truly matters to get a definitive diagnosis!

If your haven't already done so, I encourage you you check out Endochick's blog. (Just see links to her blog in this same post and/or you can find her listed in the blogroll in my sidebar.

I greatly appreciate your feedback. I took a look at your blog today for the first time and it was really interesting! I added you to my blogroll today and hope you'll be back to visit. :)

Take care!

Jeanne :)

Kelly D said...

Great information about endometriosis. It is truly a disease that isn't well understood.

Jeanne said...

Kelly D,

Thank you for stopping by here!

I was so impressed with Endochick's post (printed on her blog initially) that I asked her if I could reprint it here.

I am very grateful she gave me permission to re-post it here.

You are absolutely correct about endometriosis being poorly understood.

Jeanne

Melissa said...

I'm not sure if any of you have read the recent article in People magazine concerning these ladies diagnoses with endo. They had a comment box from the "specialist" involved which essentially did a huge dis-service to us all who suffer from this disease. Here is a copy of what I sent to the editor of People in response:


Dear Editor,

I am writing in regards to the article written in the November 17, 2008 edition of People Magazine, regarding Julianne Hough’s surgery to treat endometriosis. In your article, Dr. Randy Harris states that surgery may not be necessary for treating this disease and that it can often be managed by anti-inflammatory medications and low-dose birth control pills. He further states that today women with even a bad case of endometriosis can get pregnant. I find these statements to be disappointing at best, as someone who has lived with this disease for 18 years and has kept informed on the latest research concerning the disease. I was treated for “period pain” since I was 13 with the use of birth control pills. It wasn’t until my kidney stopped functioning, due to the endometriosis strangulating the kidney, that my concerns were taken seriously and it was discovered that I had a relatively severe case of the disease. While I have gotten pregnant, I have only had one live birth, the others ending in miscarriages due to the endometriosis. For the past 7 years I have run an internet support group with close to 1,000 members to educate and support others living with this disease. Most of the women who have been through the support group have also tried many different therapies, including the anti-inflammatory and low-dose birth control pills that Dr. Harris speaks of. The Endometriosis Association, The Endometriosis Research Center, The Endometriosis Treatment Center of Atlanta, and most of the leading “experts” on this disease, clearly state that the only way for a firm diagnosis of endometriosis is to have a laparoscopic surgery done. I feel that this article has done a dis-service to many others out there with this disease who might believe that they do not need a diagnosis prior to starting treatment, and did not even touch the point that for a lot of women, this procedure will be the only way that they experience relief from the disease.

Sincerely,
Melissa Ralston, RSW
Leader of Goddesses with Endometriosis Support Group
melissagetsmail@gmail.com

Jeanne said...

Oh Melissa!

Wow!! Where do I start??

First, thank you for your informative, accurate assessment of this situation in the media after the Dancing with the Stars dancers (Julianne Hough and Lacey Schwimmer) were diagnosed with endo.

I have blogging about this extensively in the last couple of weeks. (Some might say obsessively)... because I have read equally disturbing interview comments that mislead the public into thinking a laparoscopy is NOT needed for a definitive diagnosis of endo... This is downright outrageous!!!

How come doctors aren't standing up to challenge this dangerous myth??? How come endo organizations aren't fighting tooth and nail to get the FACTS about endo out to the general public WHILE this stuff is still in the press so much??

This is a GOLDEN OPPORTUNITY to get the FACTS out to the general public, to endo patients, and to the many doctors who don't "get" this illness!

Someday when I think my blood pressure can handle it, I'll have to pick up the People magazine from the library. Right now, I think it would boil my blood too much.

From this Guest Blog post from Endochick right here, you can see a "related link" at the bottom of the post.

From that related link, you can see NUMEROUS blog posts I have written about the dancers from DWTS and the impact of the media's misinformation.

Any media outlet that did 5 minutes or less of fact checking would know that endo diagnosis is done by a lap!!

I have read countless magazine articles, online press releases, statements on Julianne Hough's website, etc. The more I read, the more concerned I get that the public is receiving the wrong message!

Two weeks after surgery, Julianne and Derek Hough performed a dance where he got up on her shoulders and she carried him across the dance floor. She also bent her body backwards in what looked very painful to any endo patient I know who is post-op!

I hope Julianne has not done permanent damage to her body by returning to the show so soon.

All the dancers/stars talk each week about how grueling, demanding, and physical the training and dancing is.

Ex-Olympians tell of how DWTS training is TOUGHER than training for the Olympics!!

So what message does the public get when Julianne return sto such vigorous dancing 2 weeks post-op???

Endo patients face disbelief/misunderstanding of endo from their own doctors, friends, family members, employers, etc. The LAST thing endo patients need is one more reason for people to unfairly perceive them as "faking", "lazy", or "exaggerating"!!!

Not everyone can bounce back from a lap like a 20 year old athlete/dancer can. What expectations are set by this??

I have the utmost respect for Julianne and Lacey going public about their diagnoses. (Apparently, Julianne's managers tried to talk her out of talking about her endo but she said she "wanted to be honest" and that she "wanted to be a "role model"). Kudos to her for speaking out rather than hiding her illness!

With all due respect, if she is interested in being a role model for endo patients, she needs to be spreading FACTS rather than misinformation!

I fault her doctor (who from the People article you saw sounds "out-of-the-loop", to put it nicely).

I fault the media for not fact-checking endo at all and just quoting these women.

These 2 dancers are young. When I was diagnosed at 23, I had never heard of endo. I don't expect the dancers to become experts overnight!

HOWEVER, if a celebrity in the public eye has many MILLIONS of DWTS viewers plus loads of followers of Julianne's blossoming country music career, it would be prudent to learn the BASICS of endo BEFORE doing rounds and rounds of interviews reaching millions with the misinformation!!

Rumor has it that Julianne's mom and sister have endo. One has to wonder how it is that Julianne accepted an endo diagnosis with out lap first. Her lap apparently happened shortly AFTER her endo diagnosis. Huh?/?

Also, Lacey Schwimmer STILL hasn't had a lap because she says it's not necessary since they "caught it early". Huh???

These comments are a disservice to the estimated 89 million women with endo worldwide. Also, the general public (many of whom never heard of endo until a couple of weeks ago) now have heard the misinformation. :(

I hate to say it but this media frenzy about the DWTS women's endo (or suspected endo for Lacey) may be doing more harm than good!

Anyone wishing to take a peek at the endo petition, here it is:

http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html

+++++++++
ANYONE can sign!!!
+++++++++

In addition to patients, we’ve had signatures from moms, dads, grandparents, sisters, spouses, etc!!

Many, many countries are represented on this petition. If you pull it up, it shows you comments made by those who added comments when they signed it. The whole signing process (even with posting a comment too) takes about 2 minutes... literally!

PLEASE spread the word about this petition to anyone who will listen! The more signatures we get the better our odds of getting ACCURATE media coverage of endo to the masses!

We MUST counteract the misinformation coming out of Hollywood right now.

It truly is a disservice to endo patients and their loved ones.

Can anyone reading this imagine dancing like that (for those you saw it) only 2 weeks post-op???

I have been in endo support groups since 1992. I have never heard of anyone taking on physical activity like that 2 weeks post-op. I just hope she didn’t hurt herself!!!!

As far as your letter to the editor of People magazine... I could NOT have written it better myself!! It is amazing, fact-filled, contains great supporting details, etc.

I hope they print your letter!!!!!!!!

It is awesome!!!!!!!!!!!!!!!!!!!

I’m so proud of you for taking the time to write that masterpiece to People!! I honestly hope they print it!!!!!!!!!

That’s all we need is this “specialist” being interviewed stating the same misinformation the 2 dancers have said previously. It truly is a crying shame.

I believe this post by Endochick re: her sister’s cervical cancer is a PERFECT example of the trouble with self-diagnosis AND of assuming that symptoms plus family history proves it’s endo!!

Obviously Endochick’s sister’s cervical cancer was not going to be properly treated if the doc had assumed it was endo and had not done the pap smear.

In fact, my (non-medical) guess is that the hormones doc might have used to “treat” her “suspected endo” might have WORSENED the cervical cancer.

That’s just a guess but I know a woman who had cervical dysplasia (level 3) and was pregnant. So they had to wait until the birth to treat it. Well, her pregnancy hormones made it get worse much faster... So by the birth she was at a level 5 for cervical dysplasia!!

Not getting a proper diagnosis can literally put lives in jeopardy. This type of thing is why I have written somewhat obsessively in the past 2 weeks about this controversy.

Your comment was awesome and your letter to People was outstanding. If we all band together and work as a team, I am determined we can get some big TV show to do at least a segment on endo.

If Oprah and The View choose not to, we can start campaigning shows like The Today Show. I am on a mission! The more signatures we get the better!!!

So PLEASE get the word out to your “Goddesses with Endometriosis Support Group” with so very many members!

If we could harness the power of that many signatures plus their families and friends, that petition could grow by leaps & bounds!

Again, please check the petition link above if interested in checking it out!

Let’s get THOUSANDS of signatures rather than HUNDREDS!

We can do it!!


:)

Here is my contact info (aside from this blog and the petition itself)...

Jeanne :)
------------
Jeanne
Email: endendo@frontiernet.net
Twitter page: twitter.com/jeanneendo
Look for me on Facebook as "Jeanne Endo" in the "Together We Can Cure Endometriosis" group

Melissa said...

And for the latest rant on this subject...

Last night on Entertainment Tonight, it was announced that Julianne will NOT be returning next season. The reasons provided were due to her newly established singing career, however, one cannot but wonder if the real reason might have been related to her health status.

If Julianne were leaving due to the physical limitations involved with having this disease, using her music as an excuse does a further dis-service towards us all. To me, to be a spokesperson means having honest conversations about the topic at hand. Afterall, of what use is a spokesperson who doesn't do everything in their power to draw attention to the situation of millions of others?

So, in looking at People Magazine online today (can you tell I'm procrastinating?), they briefly mentioned how Julianne had recent "appendectomy surgery". Why, oh why, can't they say "underwent recent surgery to diagnose and treat endometriosis" which is more of a truthful statement? Sure, she DID have her appendix removed, but the cause of the situation wasn't infection but a real disease!

Melissa Ralston

Jeanne said...

Melissa,

Wow! That is interesting. We obviously can't know for sure what went into her decision-making process for leaving the show but it does make you wonder... While it's hard to know what is going on with Julianne Hough based on TV shows and press releases, I definitely agree that IF endo is a factor in her leaving the show... it would be helpful if she could say that. We don't know for sure, of course, what went into her decision.

Here's what we do know, based on quotes from well over a dozen articles about Julianne and her endo:

* She was diagnosed with endo BEFORE her laparoscopy. This flies in the face of what the endometriosis "experts" say. (Lap is the means for diagnosis of endo).

* Her managers wanted her to keep her endometriosis under wraps (per Julianne).

* Julianne went public with her endo diagnosis anyway. She was quoted as saying she did this because she wanted to "be honest".

* Julianne repeatedly said in interviews that she wants to be a "role model" for endo patients.

* Since the diagnoses of Julianne Hough and Lacey Schwimmer, there has much confusion and misinformation in the press on endo. (Lacey didn’t even have a laparoscopy at all)!

While Julianne's medical condition is her business, I believe her comments have opened the door for feedback... especially from endo patients. The fact is that her comments have caused quite a stir for the endo patients I know.

The media should be fact-checking! The most basic checking would tell them a lap is how diagnosis occurs.

Also, obviously her doctor's statements to the press are confusing and in contrast to what Endometriosis Research Center and Endometriosis Association say…

So I think she, at just 20 years old, is quite likely simply repeating her doctor's words.

The issue I'm concerned with is that celebrities with millions of viewers have a responsibility, in a case like this, to get an understanding of the basics before making announcements on TV that send mixed signals and cause confusion.

While Julianne Hough may not be an "official spokesperson" for endo, I do believe that by using terms like "role model" she set up an expectation with some of her fans that she was going to basically be a leader for the cause, so to speak.

I absolutely agree with you that People magazine's reference to the appendectomy only (without mentioning endometriosis) was yet another misleading statement. If endometriosis was the reason the appendix was removed, then endo should have been mentioned. (What is interesting here is that Julianne announced before surgery that she has endo and that her appendix was going to be removed so that cysts will not form on it (this is a paraphrase). I have never heard of taking the appendix out to prevent cysts from forming on it??? I have been in support groups for endo since 1992 and have never heard of such a thing. (Bear in mind that she was talking about this the day BEFORE the surgery). It’s not clear to me how her doctor could predict the need to take her appendix out before the surgery.

* It is unfortunate that it is such a challenge for the media to print/show a high quality, fact-checked story.
* I think the doctor's incorrect comments and the media's handling of this matter are problematic.
* I also wish Julianne Hough could have gotten some basic facts before being quoted so heavily in the press (making statements that left many scratching their heads).

One can only hope that somehow, if enough people band together, we can find a way to get high quality, accurate coverage of endo in the mass media.

On that note, I'm including this link for anyone who hasn't seen it:

http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html

We are up to 194 signatures. This petition is to "Create Awareness & Understanding of Endometriosis". We are hoping to get a mass media outlet to cover endo responsibly. We need to get the FACTS about endo disseminated to the public!

Thank you for the update, Melissa. There seems to be something in the news every single day about Julianne Hough. She could be such a positive force and advocate for fellow endo patients. I think her intentions are good but, unfortunately, there are mixed messages getting spread throughout the media.

Jeanne

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!