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4/20/2009

My Perspective On Claims Made By Endometriosis Foundation Of America

I will start this post by sharing a paragraph straight from the website of the Endometriosis Foundation of America because it sets the stage for me to express my perspective about the claims that are being made by the EFA:

Recently, I became aware that Padma Lakshmi (host of Top Chef) and Tamer Seckin, MD have co-founded the Endometriosis Foundation of America (EFA).

Ms. Lakshmi has been interviewed recently and has repeatedly asserted that she is cured of her endometriosis. Apparently, based on these interviews, her EFA Co-Founder (Dr. Seckin) is the one who “cured” her of endometriosis.

There is no cure for endometriosis!
That's right. Despite claims made to the contrary, there is no cure for endometriosis. I am sure I can safely speak for endometriosis patients everywhere when I say that such a cure is needed and wanted badly. I would love nothing more than for these claims to be valid. My life and the lives of so many of my friends would improve dramatically. Who wouldn't want to believe that a cure has been found for endometriosis? The fact of the matter is that there is no cure for endometriosis at this time. We look forward with hope to the day when there will be a cure.

According to the Endometriosis Research Center there is no cure for endometriosis:

Here is what their site says:

Is endometriosis curable? There is currently no absolute cure for endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it.

According to the Endometriosis Association there is no cure for endometriosis:

Here is what their site says:

Although there is no cure for endometriosis, a variety of treatment options exist. Goals may include: relieving/reducing pain symptoms, shrinking or slowing endometrial growths, preserving or restoring fertility, and preventing/delaying recurrence of the disease.

I’ve had endometriosis for 27 years. In that time I’ve heard various myths about things that supposedly cure endometriosis. Here are just a few of the issues I've seen confusion over:

Fact: Hysterectomy is not a cure for endometriosis.

Fact: Those nutritional supplements you see advertised on Google ads (the ones that claim their products cure endometriosis) are not a cure.

Fact: Prescription medications do not cure endometriosis.

Fact: Laparoscopic surgery (whether laser or excision) does not cure endometriosis.

Regarding that last item, the EFA is now asserting on its website that “laparoscopic excision surgery” can cure endometriosis. Excuse me? The EFA is proposing it has found a cure for endo?

Let me repeat this paragraph containing a direct quote from the Endometriosis Foundation of America website. I don't list this to be repetitive but to emphasize what the EFA is claiming:


Endometriosis affects an estimated 89 million women and girls worldwide. In all seriousness, if there were a cure for endometriosis would we be learning about it from the website of a new endometriosis organization and via articles about Padma Lakshmi in gossip magazines?

This would be a massive breakthrough for the medical community. It would be the solution to a problem that has mystified numerous doctors, medical researchers and patients for many, many years.

If there were a cure for endometriosis available right now, wouldn’t it be more likely announced in peer-reviewed articles in medical journals, for example? Wouldn’t endometriosis finally be a top story on the evening news... because a cure had been found for this serious, life-altering illness?

Trust me. I would love nothing more than to believe that there is now a cure available for endometriosis. The reality is that saying something is true doesn’t make it true. The reality is that I have heard enough false cures and myths over the years to know the importance of skepticism, researching things myself, and asking questions.

The EFA is hosting a "Blossom Ball" tonight in New York City. There will be various celebrities there. One can only assume we’ll likely be hearing about this in the mass media (especially given the fact that there have already been stories on national online news/gossip sites). The EFA has a public relations firm handling media matters. So I would expect we’ll be hearing more about this event.

Various celebrities are associated with this event. One person well worth noting when discussing the EFA is Julianne Hough. She is on the EFA's Honorary Committee. For those of you who are not familiar with the significance of Julianne Hough being affiliated with EFA, let me explain.

Last season on Dancing with the Stars, Julianne Hough announced on the show, to tens of millions of viewers, that she has endometriosis and would be undergoing surgery (laparoscopy) the next day. She had not had any previous laparoscopies. So she announced that she had endometriosis BEFORE she was diagnosed by laparoscopy. Endometriosis can only be diagnosed by laparoscopy. That is the definitive method for diagnosis.

While she did go on to have the surgery and her endometriosis was confirmed by laparoscopy, her timing of announcing her endometriosis BEFORE a proper diagnosis caused confusion for endometriosis patients and the public alike. (To compound matters, her Dancing with the Stars co-star Lacey Schwimmer announced within days that she too has endometriosis. She indicated to the press that she didn't require surgery like Julianne because they "caught it early").

During the week that Julianne Hough and Lacey Schwimmer announced their endometriosis diagnoses, my blog had a huge influx of new readers. My traffic meter was filled with searches on Julianne Hough and Lacey Schwimmer. It was also filled with search phrases such as, "How is endometriosis diagnosed?" "Do I need a laparoscopy to be diagnosed?", etc. It was very evident that the media circus surrounding the announcements and interviews regarding Ms. Hough's and Ms. Schwimmer's conditions directly connected to the unique searches that lit up my traffic meter.

I have blogged extensively about the commotion that occurred when Ms. Hough and Ms. Schwimmer announced their endometriosis diagnoses (see related links). The point is that Julianne Hough, however unintentionally it might have been, misinformed millions of people with the combination of her untimely announcement of having endometriosis combined with countless interviews she gave about her surgery and recovery.

EFA asserts on its site that it wishes to address misinformation. Yet they have Julianne Hough sitting on their Honorary Committee. I find this astonishing.

According to the EFA site, the cost for a table at tonight's ball is $6,500. This weekend, EFA updated its site with the following message, "Dinner reservations are near capacity at this time and online registration is now closed for this portion of the event". It sounds like this ball is a successful fundraiser just from the table fees alone.

I can't help but wonder where all of the money will go. What I mean is that I have read through the EFA mission statement and foundation goals for 2009. However, I'm stuck on the fact that part of the EFA site claims that endometriosis is curable and yet the site also says "working towards a permanent cure".

When I read the EFA mission statement, research is mentioned as being one of the EFA's focus areas. I guess I'm having trouble understanding why there would be a need to raise money for research if the condition is already cured.

Seriously, I perceive the compilation of comments on the EFA site as a mixed message.

It is unclear to me at this time exactly where the money from the ball will go and where the donated money (via their website's donation option) will be applied.

If Padma Lakshmi, Co-Founder of the EFA, is telling the press in numerous interviews that she is cured and that Dr. Tamer Seckin is her doctor and if the EFA's own website asserts "the EFA firmly believes that every stage of the disease is treatable and with the correct surgical techniques even curable", then apparently the money raised will not be used to pursue medical research for a cure for endometriosis, right? Why would they need to raise money for a cure if Dr. Seckin has already discovered one and his patient/Co-Founder, Padma Lakshmi, is already cured? Right? I’m being serious. Isn’t that logical?

Wait a moment.

The EFA website also states:



So...

1) Dr. Seckin treats Padma Lakshmi for endometriosis and she claims to the press that she's cured of it.

2) The EFA website of the organization founded by these two individuals says endometriosis is "curable" in one part of the site.

3) However, the EFA website also talks about "working to find a permanent cure" on the very same site.

I want to examine the phrase "permanent cure" for a moment because I think of a cure as being a black and white issue. Either a person is cured or not. Is there such a thing as a temporary cure? Is this a matter of semantics? I seriously don't understand the notion of "working to find a permanent cure" if (according to EFA) endometriosis is already "curable". Is EFA saying endometriosis will be "curable" someday? No. Padma Lakshmi, Co-Founder of EFA, says she already is cured.

EFA's comments from one part of their website to another are inconsistent.

I would like to close by making it very clear that I vigorously support public awareness of endometriosis. What is terribly unfortunate in this case is that the Endometriosis Foundation of America is disseminating misinformation (such as its claim that endometriosis is "curable").

Take one more look at the first sentence from this text off of the Endometriosis Foundation of America site:




Furthermore, disseminating such misinformation is contrary to the EFA’s own statements from its website regarding its intentions. As per the wording from the site above, the Endometriosis Foundation of America's statements indicate, in part, that it wishes to address "misinformation”. Instead, it is spreading it.

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

Related links:

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

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


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

Friday, November 14, 2008 Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!

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

61 comments:

Susie Collins said...

Jeanne, Excellent post. You hit the nail right on the head: Where is the peer-reviewed research substantiating the claim of a cure?

Jeanne said...

Susie,

Thank you. Yes, I find it striking that I've heard nothing of peer-reviewed research to support the bold claims being made.

Jeanne

Anonymous said...

Although there are different levels of understanding of endo (mine own fully being in only the last few years), I don't think we can blast anyone who tries to help those with endo.

yes, endo is not, and probably will not ever be, curable. Excision surgery offers the best chance of pain relief. Dr Seckin has had many posts about him on differnt sites from happy patients who HAVE had relief.

As I understand it, Ms Hough did NOT have excision surgery. Her mother and I believe sister have had surgeries in the past, and have been diagnosed. It's probably the reason people (herself) jumped to that conclusion.

I found it astounding that she was back dancing so soon, but perhaps she has a high level for pain. I, as an older woman, did have excision surgery, and took WEEKS to recover.

Padma is a bit much these days, from her naked editorials for allure, to her commercials for a hamburger chain - something most women with endo should avoid! I was happy to see Dr Redwine on the committee and other important (in the sense of integrity and commitment) people. I truly have read, heard and e-mailed with women who have had surgery with Seckin, consider him very good, and have had relief!

While I of course know that there is no cure, I'd like to say at least people are saying there is something to look into! I suffered for YEARS, in real despair, which is now bringing tears to my eyes, thinking there was NOTHING that could be done! What despair pain sadness...and yes, I wanted to die during my periods....worse than the way you feel when you have the flu! I thought, why is there a disease like this that has NO treatment?

While I agree with all your points, I do believe that the info needs to be corrected, but that the foundation gets support....

I don't know why someone like Dr Seckin didn't see all the PR material, including the site, but if he is a legit doc (which I believe he is), he needs to put accurate correct info up associated with his name and foundation. And maybe Padma could do a cooking book for women with endo? And maybe some natural remedies?

I wish I'd had surgery years ago, I wish I had run across a TV spot on a celeb who was organzing a function like this, and I would have tried surgery. But I would have been happy that I wasn't alone.

Alanna said...

In all fairness, the term "cure" is not as black and white outside the medical arena as it is inside.

Though endometriosis IS a medical condition, and it would be nice if the term were used appropriately in all contexts related to endometriosis, popular media cannot be reasonably expected to adhere to word usage as defined by the medical professionals.

I trust that the deceit is not intentional. Padma is trying to convey to her audience (many of whom have no idea what endometriosis is, since her popularity in the endometriosis community is nothing compared to her TV host status) that she no longer experiences endometriosis symptoms. The general public use "cure" to describe getting rid of the hiccups, so I don't think that her using "cure" is that far-fetched.

Yaya said...

Oh this just makes my blood boil. A "cure". Ok, it's your blog, I'll keep the true words forming in my head to myself. ;)

Cassie said...

It's too bad these people have such a broad reach and are doing nothing but spreading confusion instead of helping spread awareness. Good for you for speaking out!

Jeanne said...

Anonymous,

For future reference I don't normally make it a habit of posting anonymous comments (like many other bloggers) but in this case I decided to put the comment through for discussion.

I spent an enormous amount of time and energy researching and writing this post. I have had endometriosis for 27 years. So when I hear someone claiming there is a cure, it gets my attention.

Asserting that there is a cure is a very bold statement for this devastating condition. Bold statements sometimes need bold responses. You may label that "blasting". I view what I wrote as capturing my perception of the situation.

I worked very hard to stick with the facts as I know them and present the information. I believe people have a right to know.

I have no interest in hearing testimonials about Dr. Seckin. If Dr. Seckin truly has a cure, I believe he should go through proper channels to make that cure known.

Working with medical societies and promoting through medical journals makes more sense to me than having Padma Lakshmi do interviews with gossip magazines. Gossip magazines are not where medical cures for illnesses are announced.

As far as Ms. Hough, I have no clue what type of surgery she had. All I know is that a very large number of interviews were done with her and many statements were made that upset me, my blog readers, and my endometriosis support group members.

If you read the related link of this post pertaining to the importance of proper diagnosis (a guest blog written by a fellow blogger, Endochick), you'll see that family history alone is NOT a proper means of diagnosing endo.

Endochick's story about her sister makes is clear that jumping to conclusions can be very dangerous.I'm going to try to keep my opinions about those details of the PR campaign to myself.

I don't ever plug any particular doctors for a variety of reasons.

1) Every patient is different

2) Liability

3) I honestly don't believe it's my place to promote any particular doctor

I am all for hope and the promise of a better future for women with endo. I don't know if this is the first time you've read my blog but this is a theme I try to focus on a lot... hope, positivity, gratitude...

While you are recognizing there is no cure, the EFA website is telling the public that endometriosis is curable.

Of course anyone who experiences endo wants people out there working to make things better.

I understand what it's like to suffer for years. I have firsthand experience. I hear what you are saying.

No one wants a hopeless future with nothing on the horizon for endo patients.

I am very strongly for HOPE. I am very strongly against FALSE HOPE. The only thing worse than hopelessness in my book is false hope and the disappointment that follows.

The word curable on their site isn't some minor typo. That is a massive claim. There are 89 million women and girls with endo worldwide. If there truly is a cure, it needs to be proven through proper protocols.

Where is the scientfic research to back up the claims of a cure?

As far as your comment about supporting EFA, I couldn't dream of supporting an organization that would make such a claim as the fact that endometriosis is curable without presenting the scientific evidence to back that claim up.

They could update their site tomorrow to remove the word curable but that wouldn't erase the fact that they had made such a claim. So the notion that you seem to be presenting... just fix the website... wouldn't gain my trust at all.

Besides that, they have a public relations company helping them get the word out about EFA and the articles talk about Padma being CURED and Dr. Seckin being the one who cured her.

As far as Dr. Seckin seeing the EFA website is concerned, any Co-Founder launching a major organization that has a website would certainly need to be familiar with its content. He's the Co-Founder.

I'm sorry for your pain and suffering. We all wish that endometriosis had gotten much more attention long before now. One of my questions is whether this is the kind of attention we want.

This is potentially the most media attention for endometriosis ever. (We don't know yet if this will eclipse Dancing with the Stars but it certainly could).

Do we want the media attention getting showered on endo to be about a "cure" that no one has shown evidence even exists? How is that helpful?

I'm sorry you have felt alone with endo. I have been very fortunate to be involved in endometriosis support groups for the past 17 years. That has helped me enormously.

The bottom line is that the purpose of this blog post is to get the word out to people that this new organization is promoting an unproven "cure". That is something people have a right to know.

Jeanne

Jeanne said...

Alanna,

If you look back at my post, you'll see that I repeatedly showed examples taken directly from the EFA website that claim endo is "curable". (That is not just Ms. Lakshmi talking. Her Co-Founder is Dr. Seckin).

The EFA website is for a medical foundation. So it is part of the medical arena in the aspect of usage of the word "curable". That has nothing to do with the media at all.

Now, as far as the media is concerned... The media should be responsible and should fact-check their stories.

I understand the line between journalism and entertainment has been blurred over the years but it is irresponsible journalism to report a person is "cured" when the illness in question is incurable!

Last year when Julianne Hough and Lacey Schwimmer announced their endo diagnoses, not one news outlet (of many!) bothered to fact-check and realize that a laparoscopy is the means for diagnosing endo. Checking that fact would take about 2 minutes.

I am not suggesting that newspapers and magazines should sound like medical textbooks. I am suggesting that basic fact-checking should be part of journalism.

Honestly, it doesn't matter whether anyone intentionally "deceived" (to use your word) anyone or not. The fact of the matter is that there are many articles out now telling readers that Padma Lakshmi is "cured" of endometriosis.

I am not accusing anyone of doing anything intentional. I am very concerned about what's hitting the media.

I'm not Padma so I have no clue what she's trying to convey. It's the end result that matters. The media is spreading this misinformation.

If Padma is "trying to convey to her audience that she no longer experiences endometriosis symptoms", then that is exactly what she should say.

It appears we just have different expectations of the media and of public figures making statements to the media that could hurt people.

Thanks for leaving a comment.

Jeanne

Jeanne said...

Alicia,

I just think its totally irresponsible to claim a cure for a condition (via a combination of the website for the new organization and news/gossip magazine articles online plus People magazine) unless you have scientific evidence or research of some sort to back up the claims.

Better yet, why not publish the findings in medical journals and/or announce the discovery at medical conferences.

I have honestly never seen anything like this.

Jeanne

Jasmine said...

Just as it's done to Migraineurs, I believe it's such a slap in the face when someone claims to have a "cure" for a condition of which millions of people are clearly suffering - and many of them silently.

Good for you Jeanne for calling EFA out!

Jeanne said...

Cassie,

I know. It's ironic because so much of what their website claims are its goals seem to be the opposite of what's happening.

For example, they want to address misinformation (per the site) but they are spreading massive misinformation instead. It's all a bit baffling to me.

You're right that they do seem to have a broad reach. That could be put to use to help so many people!

You really captured it: "spreading confusion instead of helping spread awareness". That sums it up.

It truly saddens me.

Thank you, Cassie.

Jeanne

Jeanne said...

Jasmine,

Thank you!

It really is hurtful when "cures" are promoted without scientific evidence to back them up.

You have a migraine-free day! :)

Jeanne

My Endo Journey said...

Thank you. As another person said, "I believe it's such a slap in the face when someone claims to have a "cure" for a condition of which millions of people are clearly suffering - and many of them silently." Amen to that. About ANY condition!

I'm forever grateful that endometriosis is getting such attention (get it out there...that means more research and more focus!!!). But, I, like most suffers, want it to be in a more accurate light (esp by the medical professionals proclaiming it). To say you have been cured, to me, seems like a very bold statement to make. I work in Oncology. Believe you me, that is NOT a word that is taken lightly in the medical community.

And, you are exactly right about medical research, literature, etc. I do a lot of digging into the articles, research, etc being done out there. If there is a cure, it would 100% be in the literature. It would HAVE to be!!!

I would love nothing more than to have a cure. Do you know how happy that would make me? I just think that they need to be a little more clear. It's not even what Padma says. I understand that the the normal, everyday person might get that confused. But, it says it right there on their website. I don't even doubt that people have been offered relief by this technique. But, each of us is different; it won't work for everyone unless they can find out WHY this is happening.

And honestly, what is a "permanent cure"?

Word. We all want a cure. We all want this information out there. It's hard to control the media though...they are going to say what they want and what they think sounds best sometimes. Ugh.

Jeanne said...

My Endo Journey,

Thank you for your thoughtful comments. It really does feel like a slap in the face when someone claims to have a "cure" for a condition that affects millions of patients. I totally agree. That seems to be a common sentiment from the patients I talk with.

As you know, I have made it something of a personal crusade to spread awareness about endometriosis and get FACTUAL media coverage about it.

My personal perspective is that I'm not at all sure that this will mean more research than would have been done otherwise. After all, in order for people to want to research endometriosis they have to believe it's still a problem and the EFA is asserting that it's curable. If it's perceived curable, will medical researchers focus their attention elsewhere?

The amount of endometriosis research has been too underfunded historically. Do we need ANY of those in the medical research community hearing EFA's claims and thinking that it really is cured?

I know you work in the medical research field and that gives you insights.

I don't mean to sound cynical. I do worry, though, about the potential harm these "cure" comments will have on the much-needed endometriosis research of the future.

I agree with you that having endometriosis featured in a more accurate light is very important.

As you pointed out, I too expect this from medical professionals in particular.

You are not the only one to view someone saying they have been cured as having made a bold statement. It IS bold.

I can only imagine the word cure isn't taken lightly in your field. Nor should it be.

Endo and cancer are often compared because to get rid of abnormal tissue or tissue growing in an abnormal location, removing it is an option given the right circumstances.

There are times when doctors remove tissue without knowing if it's cancer, if it's endo, etc. (until the biopsy results come back). It's not always as straightforward as people may sometimes think.

Yes, I certainly believe that medical research, literature, etc. is the accepted means for a new protocol, new treatment method even sometimes, or new "cure" to be released to the public.

I know you are in the unique position of being an endometriosis patient (with Stage IV endo, no less) who also happens to work in the medical research field. So I appreciate your feedback very much because I think it's crucial for readers not to confuse skepticism and/or appropriate caution with naysaying.

I am not a naysayer. I work hard to stay positive despite enormous adversity that has been thrown my way. As upset as I occasionally get about the numerous illnesses I have, I work hard to try not to be bitter about it.

What does make me bitter is when I hear claims for "cures" for my illnesses every time I turn around. It's not just endo. Heck, with the number of illnesses I have, I hear about "false cures" more days than not, by far.

That wears on a person after awhile. I'm not going to pretend it doesn't really, really bother me because it does. Between ads for false cures on sites I visit to unsolicited emails to other individuals/organizations online with whom I am not comfortable dealing, I have had to learn to be cautious.

I deal with false cures almost daily for my various illnesses and it's, frankly, exhausting to always have my guard up. However, I know that I must.

While I don't do the degree of digging that you do in your medical research work, I have spent my fair share of time looking at medical journals over the years and reading about the medical conferences/conventions health care professional go to.

I certainly know that New York Post “Page 6” one paragraph articles about Padma Lakshmi are not a conventional way to introduce a "cure" for any medical condition. Certainly a condition affecting an estimated 89 million women would get a more respectful introduction to medical professionals than a paragraph in the New York Post.

For heaven's sakes, I have never, ever heard of a "cure" for a serious medical condition (or any medical condition) announced in the "infotainment news" outlets available online.

As far as the EFA website identifying endometriosis as "curable", all I can say is that a brand new site for a new organization announcing this "curable" theory just plain boggles my mind as a source for such a major announcement.

What happened to peer-reviewed articles in medical journals? What happened to showing the world medical research to prove that a particular method (in this case the type of surgery EFA promotes) does what is claimed?

Never in my life have I seen anything quite like this.

Yes. I would love nothing more than a cure either. Since endo affects so very many people I know and care deeply about, I would be ecstatic if there were a cure. I see and hear no proof. I see signs of unconventional methods of promoting this purported cure, though.

You said it. It says it right there on their website: "curable".

I don't have any reason to doubt that there may be people who have been offered relief by this technique either. I'm not in their bodies. I can't feel their symptoms.

Again, you make an excellent point that every one of us is different. That's a good point. Yes! The cause is important. There are many theories about why endo happens but the medical community has yet to rally around one explanation... and there may be multiple explanations.

The causes are possibly multi-factorial. I think that's part of what has made this condition so very hard to manage.

Thank you! I'm not the only one who reads "permanent cure" and wonders why the word permanent is even necessary? Thank you for that. That phrase just jumped out at me.

Yes, we all want a cure. We all want information out there. Some people are satisfied with simply getting the word out there. I am not one of them. I believe it's high time we get the FACTS about endo out there... which is exactly why I started that endo awareness petition. (See top of my homepage to sign, everyone who hasn't already).

I fully recognize it's hard to control the media. I get that. I have to say, though, that if the message given to the media is "I'm cured" then it's hard to blame the media – (except for their lack of fact-checking).

I do have a major pet peeve with people who call themselves journalists not doing the most basic fact-checking. I believe that tossing something in as a news story without verifying that any of it is accurate is not journalism. Maybe that's just me but that's how I feel.

I understand the media puts its spin on things. I have to say, though, that EFA lists a public relations firm on their site.

Wouldn't you think that between a public relations firm, a medical doctor, and a patient affected by the disease that a story such as the tiny, one paragraph one in the New York Post could be accurate?

Maybe I expect too much.

Jeanne

Jannie Funster said...

Awfully glad you posted this, Jeanne.

THANK YOU!!

endochick said...

Jeanne,

Before I write my comment (again because the one I wrote earlier never got posted!), I would like to address Alanna and this whole businees with the media.

*Being a freelance writer who has worked in for newspapers, I know that fact checking is vitally important. If someone's quote seems fishy and your fact checking proves it to be wrong, you don't use it. Period.*

If you have read most of these interviews you'll notice that they all sound the same. Would you like to know why? It came from a press release. Newspapers love press releases. The reporter can often pull a story just from the release, and if needed a quick phone call. They have some meaty quotes for the reporter to use, some bullet points, and the necessary information. Everything to make a good story.

endochick said...

Jeanne -

I ditto Susie's remarks and the remarks from the post on my blog:
WHERE'S THE PEER-REVIEWED RESEARCH?

We can't take seriously the claims of a excision surgery being a "cure" without substantial evidence. And this has ABSOLUTELY nothing to do with Dr. Seckin. We are NOT on a personal attack of Dr. Seckin. It's the Foundation and it's purpose that we question.

Jeanne said...

Endochick,

First, I just found your missing comment. Sorry about that. It was stuck in comment moderation limbo because I had missed it when it came in.

I've been so tired, busy, and overwhelmed lately that my comments moderation is backing up. I just found the backlog and I'm trying to catch up right now.

In regard to your comments about the media in response to Alanna's comments posted above, I agree with you that fact-checking really is important and it, sadly, so often seems to get skipped!

I too have noticed the enormous similarities from one article to another.

It's to the point that some stories are word-for-word when you compare them to other stories. This would make sense if a common press release were the source for multiple news stories.

Just by Googling and reading through the articles out there, it's easy to see how very similar they are.

We saw the same type of thing happen over a period of weeks after Julianne Hough and Lacey Schwimmer made their endometriosis announcements.

Story after story said the same thing. Story after story contained the same troublesome quotes containing misinformation about endometriosis.

So I think you bring up a very valid point regarding the media.

Now, I'm going to go find your second comment and reply to that one seperately.

Thank you for your comments.

Jeanne

Jeanne said...

Endochick,

Yes. That is the million dollar question. Susie has asked it. I have asked it. You are asking it. Others have asked it.

WHERE'S THE PEER-REVIEWED RESEARCH?That one question covers a lot of ground. Claiming a cure for a medical illness is a serious issue. Where is the research to back up these claims of a cure?

I could not agree with you more that this is not about a personal attack on Dr. Seckin and is about questioning the Endometriosis Foundation of America's claim of a cure.

If this is a valid cure with peer-reviewed research to support its efficacy, where is it? That's the question.

Jeanne

P.S. An example of being puzzled about the purpose of the EFA is that it claims endo is cured and yet its mission statement talks about research. If it's cured, what is left to research? That doesn't make sense to me. To me, there is a disconnect there.

Jeanne said...

Jannie,

Thank you!!!

Jeanne

Fighting Fatigue said...

Great post as always, Jeanne. It really infuriates me when people say they have been "cured" from a chronic illness. I get emails all of the time from people trying to sell me their crap because they have been "cured" from CFS or "cured" from Fibro. If they have been cured, then they were never sick with those illnesses in the first place. Give me a break. Good for you for taking them on!

foxywaitingroom said...

Jeanne,

Once again thank you for alerting us to the quacks of the world. I expect that the Dr in question has a financial interest in selling snake oil!

Foxy

Jeanne said...

foxywaitingroom,

My goal with this post is to highlight for readers here that the Endometriosis Foundation of America's claim that endometriosis is "curable" (that wording straight from their website) has not been backed up by scientific evidence, peer-reviewed medical journal articles, etc.

This troubles me. I have never heard of a cure for such a serious illness (affecting an estimated 89 million women/girls worldwide) being announced via gossip columns and a new website. I've just never seen anything like it.

Jeanne

Jeanne said...

FightingFatigue,

Thank you. I too get inundated daily with false cures. It's maddening.

What disturbs me the most in this case is that from everything I can tell, EFA claims endometriosis is "curable" when there are no peer-reviewed medical articles to support the claim.

That begs the question, "where is the money going?" If EFA is soliciting donations based on a cure without providing substantiation for their claims, who is getting all of that money?

That ball alone had to have raised an enormous amount of money. The tables cost $6,500 a piece and they were said to be at capacity on their website.

If endo is "cured", what is the money even needed for?

It's all very upsetting.

Jeanne

Natalie said...

Hey, I read this the day you posted and I felt the exact same way as you did. When I read the quote, before you had mentioned anything of your own opinion, I started saying pretty much all the same things as you.

I told my mom about it and she was pretty frustrated herself. She has had endometriosis since she was in high school...

Anyway, I didn't comment until today because I was reminded of this when I saw a Pantene commercial with Padma Lakshmi in it.

I find it insane that they claimed it has been cured...

Jeanne said...

Welcome Natalie!

Thanks for leaving a comment. I took a very quick peek at your blog last night and will be checking it out again soon.

I apologize for the delay in responding to your comment. It was quite a week so I'm not getting things posted as quickly as I'd like. So I appreciate your patience.

I'm not surprised at your feelings regarding this subject because so many people share this reaction.

It is incredibly frustrating on so many levels.

I have never heard of a medical "cure" being announced via gossip columns and a new organization's website without peer-reviewed research. It just astounds me.

What is even more troubling than what was outlined in this post is that in the course of the last week I have had one endo organization after another defend this endo "cure" (in one form or another) to me via social media.

I fail to comprehend why so many different endometriosis organizations are so anxious to defend EFA's claim of a "cure"...

It really makes me suspicious about people's motivations. For example, when endometriosis organizations are on record as saying there is no cure... but they are simultaneously promoting EFA online... I have to wonder what the heck is going on behind the scenes.

Some of them shy away from the actual word "cure".

The fact is that there are now many who are defending the notion of a "cure" (whether they feel comfortable calling it that term or not) or the EFA in general.

Some get into semantics discussions which amount to skewing what a "cure" means. Some seem to think a long-standing period of being symptom-free equates to a cure. I do not follow their logic.

As endo patients are well aware, some fortunate patients do experience periods of remission. That does not make them "cured". Too many women have had such symptom-free periods only to be followed by more symptoms.

It is all very troubling to me. In the end, it is endometriosis patients who stand to lose when things like fame, money, and credit for a "cure" get put ahead of the well-being of endometriosis patients.

I would like nothing more than to believe there is a cure for endo. I know a large number of women with endo and I have it myself. Of course we would like to take full advantage of a cure of one were available.

The fact remains that the proper medical channels typically followed when announcing a cure for a condition are being bypassed for gossip magazines, the EFA's own website, and via various accounts under various names on social media.

Ultimately, it's the endo patient who loses when a "cure" gets claimed without proper substantiating medical evidence.

Jeanne

Vickie said...

Hi Jeanne, I am stopping by from Yaya's blog and I read that article and the comments. I just wanted to say that you and Yaya were awesome! Good for you for speaking up!

Sonja said...

Wonderful blog (as always!) Jeanne! You rock!!

Jeanne said...

Vickie,

Thank you for stopping by! I appreciate your support.

Jeanne

Jeanne said...

Hi Maija!

Welcome! I got your comment. I generally go out of my way not to post specific drug names on my blog posts or within comment fields when at all possible.

I don't have a way to reach you directly via your profile. Would you please be so kind as to re-submit your comment without the medication name listed?

I try really hard not to plug any particular prescription drug names or health care practitioners at all whenever possible (as I've touched on in previous posts).

I was hoping you might be able to resubmit your comment without the drug name listed.

Despite the medical disclaimer on my blog, I still try to be cautious about sharing treatment-specific information.

Each endometriosis patient is unique and I believe having the patient consult her own physician(s) is the safest way.

I appreciate your comment and look forward to hearing from you!

Jeanne

Jeanne said...

Sonja,

Thank you for your supportive comment (as always!)

I really appreciate it. This whole situation has caused quite an uproar in the many endometriosis patients I've spoken with lately (which is many).

Thank you, Sonja! I hope you are feeling better! I sent you a Facebook message. Hope it helps!

Jeanne

Shauna said...

Hi Jeanne!!!

Come on by and pick up an award that is waiting for you!!!

Hope you are doing well honey,

Shauna <3

endochick said...

Jeanne -

If you have any links to my recent article concerning EFA, you'll have to remove them from this post. They will not work. If you wish, you may link to the post explaining why I yanked the other posts. I will email you this link.

Frankly, I'm fed up with the inundation of rude and foul-mouthed comments I am getting on a daily basis in my Wordpress in-box from women who believe we are on a personal attack against Padma. These women apparently cannot read because we have stated over and over again WE ARE NOT! I am too stressed out right now to deal with it. But I do highlight that those posts made a change, even if a small one, and was worth it.

Jeanne said...

Endochick,

I don't have any links to the EFA article you mentioned. I completely understand your frustration regarding the comments you received that were hurtful and non-productive.

This situation is incredibly stressful and it's unfortunate.

Your hard work has been helping endo patients for years. Don't let recent events get you down. I realize that may be easier said than done.

Hang in there!

Jeanne

infertilityrocks said...

Hi Jeanne!

Woo...you're getting a lot of interesting comments on this one! I do think it's terribly irresponsible for a 'so-called' medical foundation to purport that there is a cure, when in fact, there is not.

It's so easy for someone like me who've had symptom relief for 6 years past lap (although infertility still remains...grrrr!) to say there is a 'cure'. But I know that is not the case for everyone.

It makes me LIVID when someone mentions some quick little fix to my infertility (relax, take a vacation, go to chiropractor/accupuncturist, stop thinking about it). It just seems to trivialize the pain I've endured and make me feel like I'm doing something wrong. I imagine it's the same for you with this topic.

You go!

Eve

Jeanne said...

Hi Eve!

Yes, this topic has generated some interesting comments! Thanks for your comment.

I just wanted to clarify one point you touched on in your comment... You said you are currently experiencing infertility. So you are not symptom-free from your endo (unless there are other factors).

I am very happy for you that your other symptoms are not occurring at this time. I'm sure you'll agree that the infertility alone is a huge enough issue with which to deal!

Of the 27 years I've had endo, for 17 of them I have been in support groups (offline and online) for it. In that time, I have met hundreds of women with endo. Sadly, too many of them have had periods of remission from all symptoms --- only to have symptoms recur somewhere down the line.

The fact that you are still experiencing infertility (assuming you don't have additional causal factors besides endometriosis going on that I'm not aware of) means that you really aren't symptom-free of endo.

Since infertility is such a huge issue on its own and since it can have so many causes, sometimes people tend to look at "everything else" (endometriosis symptom-wise) as being in one category and infertility being in another.

In some ways they are very different (non infertility endo symptoms vs. infertility caused by endo).

The fact is, though, that endometriosis is one of the leading causes of infertility. So, infertility is - for some patients - a symptom of the endo.

I guess what I'm trying to say is that having improvement of symptoms other than infertility for x amount of time but still having infertility isn't really a symptom-free period.

It's great that your other symptoms are doing so much better but if endometriosis is the cause (or part of the cause) of your infertility then you are not symptom-free if you are currently infertile. Do you see what I mean?

In any event, even if you were symptom free for that same time period... I have met too many women over the years who have had a comparable remission period only to have endo symptoms came back fast and furious and it's really unfortunate when that happens.

Yes, I can relate to the "getting livid over comments made" part. I do think that when things get oversimplified or distorted it really does make those who are suffering feel trivialized or somehow invalidated.

The notion that we endo patients are only suffering because we had the "wrong kind of surgery" could imply that we didn't seek out the "right" doctor and have the "right" surgery".

It is all very upsetting to many and so many people I know to read about this "cure" for endo while we suffer daily with this condition.

I have never seen a medical cure announced in gossip magazines. To me that is just a bizarre way to announce a "cure".

Articles like this were in the first wave to hit the Internet:

New York Post article on Padma LakshmiI just don't see how an organization can be taken seriously when articles containing no medical evidence are what's provided to the public at the time these "cure" claims are being made.

For heaven's sake, the article refers to her as a "hottie". What medical cure is announced in a magazine or newspaper that uses terms like "hottie"?

Jeanne

Jeanne said...

Readers,

This is just a reminder that I don't publish blog comments that promote commercial sites, contain ads, pharmaceuticals, etc.

Thank you!

Jeanne

Jessica said...

Jeanne,

I wish there was a cure for endo and maybe someday there really will be. Maybe the treatment described by the Endometriosis Foundation of America will provide relief for many women. What I don’t see ANY proof that this is a cure. While this treatment may help; I have known many women that have had endo removed surgically and had several years of relief to only have it reoccur again some place else in the body.

If this is truly a cure, where is the peer review? Where is the AMA support for this procedure as a cure? Why are they having fund raisers if they have a cure? If 89 million women have endo, this “cure” would make the national newscast in a heartbeat. The thing is that this is a treatment to temporarily relieve the issues associated with endo. It is NOT a cure.

Many of us studying this subject strongly feel there is a gene abnormality that is the source of the endometrial tissue growing in areas it shouldn’t. Removing the tissue is only putting a Band-Aid on the issue. This procedure does not address the infertility that often goes with endo.

The Endometriosis Foundation of America and their doctors have a great deal to gain by making such claims. Unfortunately many women (very bright women) will believe their claim to find out several years down the road that this was not a cure, but a procedure to provide temporary relief.

One thing is for sure. The EFA has created a great deal of noise about endo. Too bad they had to do so with such misleading information! Blogs like yours will hopefully help women understand the truth about endo and other illnesses. I truly hope that a cure will someday be available and that it comes out in leading medical journals and not cheap magazines. At least it wasn’t in the Enquirer or the Globe. That would have made it far more credible…

Great job on your blog! I look forward to your next post.

Jessica from your local group.

Alanna said...

Hello again,

This blog has certainly prompted a huge response in the endo community! I don't think I have been to a singe endo site in the past week that doesn't have a link to this post or EndoChick's similar post. I think it's great that woman are advocating against misinformation about endo.

The big response prompted me to contact an endo specialist to get a professional's opinion on the issue. Though I absolutely agree with you that it's a shame that anyone would be mislead to believe that endo is curable as a result of any of the publicity surrounding Padma Lakshmi, The Endometriosis Foundation of America, or Dr. Seckin, I feel like there has to be a reason... and that it isn't all just a big mistake.

In talking to this doctor, I found that "cure" is actually used quite a bit in the medical field even when it isn't implying the absolute cure that we all hope for. A cure rate is often used by surgeons to describe the ratio of patients cured to those who still presented symptoms after a procedure. In these cases, cure is defined as the patient not needing any further treatment within a year of the surgery.

I am not at all trying to be argumentative or ruffle anyone's feathers. All I hope to do is point out that maybe the Endometriosis Foundation isn't to blame entirely. An unfortunate truth is that this disease is never going to be cured without a substantial amount of money being put towards research, and that money isn't going to come solely from endo patients (these poor women are already burdened with medical bills...). It's going to take some media exposure to get more people interested, and it's going to take some rich people to fund the extensive and accurate research that will be appropriate for peer-review and publishing by professionals.

I hope that there is more care taken to provide factual information by popular media. It's so important to be very clear about these details, especially this early in the awareness campaigns.

I look forward to reading more posts from you, Ms. Jeanne. God bless!

infertilityrocks said...

Hey Jeanne!

I probably should've called myself 'pain free' instead of 'symptom free'! Although I have a myriad of factors contributing to my IF. I've recently deemed myself 'gynecologoically disturbed' due to the issues...let's see: I have a history of endo (and know that it may be rearing its ugly little head without pain), I also have an atypical form of PCOS, and recently discovered that I am dealing with POF (premature ovarian failure) on top of issues with my luteal phase and thyroid.

So it's hard to isolate what the heck is going on in me. My doc is now recommending we get quite aggressive with fertility tx due to my POF, so I'll be looking into IVF in the next few months. He quoted me the stats of IVF before lap are the same or better than after lap (due to the fact that a large portion of own of my ovaries may be lost).

So I'm getting some other opinions on what the heck to do! Hoping to avoid a lap before (or IF I do) IVF due to the time lost (since I'm in what he considers the 4th quarter of the game these days).

I'm positive that I have multiple laps and probably a hysterectomy in my future. My mom had a VERY complex hysterectomy with severe scar tissue (I presume that was endo) several years ago. I look to be following in the same path.

Yay.

endogirlie said...

This makes me very angry!!!! It goes to show the misinformation out there....even the people diagnosed with it have no idea how it actually "works." I don't watch dancing with stars, but I do remember when all that was going on.....it was ridiculous, and
I remember thinking " these girls have no idea what their talking about and you can't catch it early to avoid surgery, her dr. may have said he thinks she may be suffering from that based on symptoms, but could not know for sure until surgery was done!!!! My dr. told me that before I was diagnosed, but also told me the only way to know is through surgery.... I support and am a member of the Endo association b/c it is a very honest organization, they talk about treatment to help with pain, but never once said there is a cure!!! There main goal is to educate people on this disease!!! It's unfortuante that there are other organizations out there like this one, it takes away from groups that are doing good and are truthful. Thanks for posting that:)

Melissa Ralston said...

Nice article on your impression of the claims put forth by the latest Endo Foundation to enter the community.

As per Websters (one of the most common dictionaries there is) the definition of cure is:

1. a means of healing or restoring to health; remedy.
2. a method or course of remedial treatment, as for disease.
3. successful remedial treatment; restoration to health.
4. a means of correcting or relieving anything that is troublesome or detrimental: to seek a cure for inflation.

So let's take #1, #2, and #3, that would mean that a cure would essentially take away our symptoms. While it doesn't mention whether this is a long-term thing, to many of us the word 'cure' means exactly that: the lack of further disease being present. However, endometriosis tends to return even after a successful surgery that alleviates symptoms, sometimes in different locations than originally discovered.

Regardless, if you remove the endo from one spot and it no longer comes back in that spot, you have only "cured" the endo in that one spot, you haven't "cured" the disease if it occurs in a different spot, no matter the length of time since the prior surgery. No matter where the endometriosis is located it is still endometriosis.

For an example of this, my first surgery discovered endo strangulating the kidney. That growth was removed. My second surgery found endo on my intestines, bladder, cul-de-sac, abdominal wall, and yes, again on the kidney that it was previously EXCISED from.

All of my endo was felt to be successfully surgically removed following lap #2, and yet, a year later, I found myself again on the operating table for lap #3. Was I cured in the meantime? Yes I had symptom relief, however it was SYMPTOM relief not any long term cure from this disease. I was also taking hormonal medications to suppress my symptoms during that time. Is that the same as being a cure? My idea of cure is that you wouldn't have to take medication to further treat the disease, as you wouldn't have the disease any more.

Jeanne said...

Jessica,

I wish there were a cure for endo too and certainly hope there will be someday.

Since I have no personal experience with the treatment promoted by the EFA, all I have to go on is what I'm hearing. What I am hearing is what the mass media is reporting and what the EFA website states. It started out in what I term "gossip magazines".

Gradually the articles are getting published by magazines less known for gossip and more known for news.

However, I still haven't seen articles published in any of the respected medical journals one would expect a breakthrough "cure" to be covered in.

There are many theories on what causes endo. None have been proven. Studies have shown there is a strong genetic component to endometriosis. My mother has it. Many women I know who have endo have relatives who also have it (i.e. mothers or sisters).

You are right that surgical removal of endometriosis does not guarantee fertility by any means. Since infertility is a symptom of endo for many patients, the existence of endometriosis-related infertility alone would negate the notion that there is a "cure" for endo.

Endometriosis-induced infertility is not always tied to some sort of physiological obstruction (i.e. blocked fallopian tubes). My understanding is that the medical community doesn't even know why patients such as this can't conceive.

While there are certainly endo patients who are able to conceive following laparoscopic surgery for endometriosis, there are many more that cannot.

How does all this "cure" talk make them feel as they go through the grueling processes associated with infertility treatments and/or foster-to-adopt and/or adoption?

As they struggle to find tens of thousands of dollars to fund their quests to become parents, how do these EFA "cure" claims make them feel? Comforted? Or insulted and hurt?There simply hasn't been peer-reviewed research made available to the public to support the "cure" claims being made.

For all I know, this particular type of surgery may very well be an effective treatment for endo. I am not in a position to evaluate that. Honestly, its efficacy isn't even the issue at hand.

The issue at hand is that EFA claims laparoscopic excision surgery is a "cure" for endo. Treatment is not synonymous with cure.

EFA could be claiming "laparoscopic excision surgery is the most effective endo treatment in the world" in its interviews. That is not the way any of the articles read. The articles that are spreading throughout the media now use the word "cure".

Like you, I don't see any proof that this is a cure. I also fail to understand why a legitimate cure would not be introduced through the proper channels.

I too have known many women that have had endo removed surgically and had several years of relief to only have it reoccur again some place else in the body.

I am well aware (from reading and watching interviews of doctors affiliated with EFA) that the EFA apparently believes that post-surgical reoccurrence such as this can be a consequence (for some percentage of the time... I won't get into a numbers game) of "improperly done surgery".

I am about to break my own rules here. Normally I try not to name specific doctors in blog posts or comments. Just as I mentioned Dr. Seckin in this post because he is the Co-Founder of EFA and it would be difficult for me not to name him, I will be mentioning another doctor affiliated with EFA here to illustrate my points/provide source information for comments he made.

My blog post comments are moderated by me. This is always the case but I am mentioning it here because I am aware that there are fans of different doctors out there. I will not be publishing testimonials for any doctor. I do not post the name of my doctor and I will not be posting comments from people issuing testimonials for theirs. Nor do I post brand names of prescriptions, supplements, etc. The blog comments here are not designed for advertising. So I ask that anyone wishing to join the conversation on this post please refrain from posting testimonials. In other words, you could have a fantastic and relevant comment that happens to contain a plug for a particular doctor or center and I will not be publishing the comment because of the plug. So, I welcome everyone’s comments. I just wanted to mention for anyone unfamiliar with my blog that I don’t post links, testimonials, or anonymous comments.

Here I have decided to insert a link to a video clip of relevance to how I'm drawing my conclusions regarding “improperly done surgery”:

Video clip of Dr. Tamer Seckin


The bottom line I'm hearing is that anyone out there who had surgery with a laser rather than with excision (the vast, vast majority of patients) has been, to use the word on the video, "mistreated".

So I understand that the EFA believes the key is to have excision surgery with one of the doctors they deem "qualified" to perform laparoscopic excision surgery.

From what I gather after watching the above video and after reading an interview with EFA Medical Advisory Board member Dr. David Redwine, the number of doctors the EFA would deem worthy of approval as being properly trained to do this surgery is approximately 20-25 in the entire United States. (Talk about supply and demand)!

Source: See Dr. Redwine’s comment #5 from this 4/17/2003 interview (an interview so incredibly loaded that I can’t possibly go through it point by point... so please be aware that I am not endorsing his comments but I am simply including this link to demonstrate where I get the notion that there is such a scarcity of the type of doctors that Dr. Redwine, who is affiliated with the EFA, is suggesting one should seek out for endometriosis surgery).

Medicine.Net


I will make just one more comment regarding the loaded link above. I think the following quote from it is incredibly interesting:

“If reflux menstruation was the cause of endometriosis, then it would be impossible to cure the disease, and it's been known for over 50 years that endometriosis can be cured by excision”. – Dr. David Redwine, MedicineNet.com, 4/13/2003

Did you catch that? Dr. Redwine claimed in this 2003 interview that “...endometriosis can be cured by excision” and that this has been known “for over 50 years” prior to the 2003 interview??????? This is a doctor who sits on the EFA Medical Advisory Board. If endo was cured 50+ years prior to 2003, why in heavens name are 89 million women and girls suffering with this insidious illness?

Hypothetically, let's say that despite the very unorthodox means by which EFA is announcing this "cure" for endo... that it is a real cure.

Seriously, if that were the case, would it be responsible to raise the hopes of women and girls with endo by throwing around the "cure" word all over the press when there are only about 2 dozen doctors they apparently deem qualified to perform the surgery which they claim provides a "cure"?

(I won't even get into how much these surgeries cost right here because I want to focus on the claims being made, the lack of proof of a cure, and the reckless way the word is being thrown around).

Seriously. It's not like any of the many interviews of Padma Lakshmi say, "It can be cured but only if you see one of the 20-25 surgeons in the U.S. who are capable of performing it". No! Her interviews say she's cured.

OK. Hypothetically, if this "cure" were a true cure (different people's definition of cure seems to vary), would it be practical to assume that millions and millions of women could possibly find the money, time, ability to travel, etc. to have such surgery?

If the cure were real (despite its unusual method of introduction), wouldn't the responsible thing to do be to explain in the "cure" interviews that the "cure" ISN'T available in just about any city in the U.S., not to mention the rest of the world?

Wouldn't heavily promoting this "cure" in the mass media conveniently increase the demand for these surgeries so far above (despite issues with health insurance companies that would not cover such ventures) the supply of available surgeons who they deem "properly trained"?

The law of supply and demand could get really interesting at this point because with enough media coverage of this "cure", if even a small percentage of endo patients were to believe in this surgery strongly enough to seek out a surgeon to perform it and travel to that surgeon, doesn't it stand to reason that there would conceivably be waiting lists to get in?

Once the waiting list phase was to hypothetically set in, wouldn't that be a perfect time for these doctors to raise their rates (in line with the supply vs. demand theory)?

I've heard of parents of a young endo patient taking out a second mortgage on their house to pay for an excision doctor. That did not prevent her symptoms from recurring later.

As you asked, if this is truly a cure, where is the peer review? Where is the AMA support for this procedure as a cure?

As you also asked, why is EFA having fund raisers if they already have a cure?

Yes, one would think that even long-neglected-by-the-media endometriosis would hit the national news for the finding of a "cure" for an illness affecting an estimated 89 million women and girls with endo.

Not only would a cure for endo be extremely newsworthy because of the sheer number of people it affects but, frankly, all of the people who have been profiting from endometriosis patients (many, many people) would suddenly lose their cash cows.

I would think that would prompt a story right there.

I agree that temporarily relieving issues associated with endo is NOT a cure.

There are many theories about what causes endo. I hear what you're saying that without getting at the cause of the problem, it's very challenging to "cure" it.

In the many, many media stories currently circulating, I haven't read any that get into specific claims for what this surgery does or doesn't do for infertility.

I've seen many, many articles claiming Padma Lakshmi's endo is cured and the EFA site calls endo "curable"... but nowhere do I see anyone getting into specifics on infertility.

Needless to say, this is a HUGE issue because so many women with endo also have infertility. So I find it curious that this hasn't been addressed. I'm not talking about articles glossing over infertility by throwing out a stat about its prevalence. I'm talking about details!

If endo is "curable", then what does that mean for the enormous number of women with endo trying unsuccessfully to get pregnant?

I see a lot of emphasis from EFA’s site on the importance of early diagnosis. No one is more for that than me!! (Please see numerous blog posts I've done about this topic. There are too many to list but if you search my blog for "Shaping Youth", you'll see a lengthy, detailed blog post I wrote about this). But why do I worry that a very good thing (emphasizing early diagnosis) could get turned into a scapegoat when “cures” don’t occur for some (see below)?

Anyway, regarding the “scapegoat” theory, why do I have this funny feeling that EFA's response to why endo patients can't get pregnant (or carry to term) despite having laparoscopic excision surgery with a doctor the EFA deems “qualified” will be, "she wasn't diagnosed early enough"… or that also could be the “scapegoat” for women who continue to have other endo symptoms (besides infertility) after their surgery method has been done by a surgeon they have deemed qualified to treat endo with laparoscopic excision surgery. Seriously, I can read the writing on the wall in their wording on things and this wouldn't surprise me.

How is that going to make the average infertile endo patient feel if this type of reply gets tossed out by EFA as to why the “cure” didn’t work for Person A? A woman who went through the classic 10 year delay from symptom-onset to diagnosis and then spent x more years trying to conceive... How will that make her feel?

I don't ask this question to upset anyone (!) but because I have been reading an enormous amount about this organization and people affiliated with it and I truly believe that this will possibly be their "scapegoat", if you will.

It'll all boil down to, "if you'd only gotten to us sooner". Just read their interviews and see if you agree.

Going back to the supply and demand, yes... I think claiming a "cure" which only a very small number of doctors have training in could certainly result in some very lucrative results for the surgeons "deemed worthy" to perform this form of surgery.

In the extensive reading I've done online in the past couple of weeks, it's very clear that there are already women who believe this claim of a “cure”.

I want nothing more than for as many endo patients as possible to get help. If someone believes this surgery is the answer to their dreams and wants to have it, I truly wish them the best of luck. No one deserves to suffer the way endo patients do.

As you pointed out, though, those who try this method expecting a cure may find out years down the road that it is not the cure they were looking for or expecting.

I heartily agree with you that temporary relief is not synonymous with a cure.

Yes, the EFA has created a great deal attention about endo. I agree with you that such a wide scope of attention could be used to HELP endo patients in significant ways!!!

In my opinion, spreading misinformation (if you read their "news articles", you'll see that the misinformation is vast and extends far beyond the "cure" talk) is very harmful. Spreading misinformation takes endo patients BACKWARDS.

One or two blogs (or 5 or 8 blogs) are no match for the massive PR machine that works for the EFA. We need more people to speak up. This is a very serious issue.

I am speaking the facts as I know them and that's a start. In all reality though, we need to do far more than we're doing! If each of us does her own small part, we can all work together to make a difference.

I too truly hope that a cure will someday be available and I certainly believe that it should come out in leading medical journals.

Thank you for your comments!

Jeanne

Jeanne said...

Hi Alanna,

Yes, this post is getting quite a response. I agree with you that it is important for women to speak up when they see and hear endo misinformation.

I’m a believer in the saying, “everything happens for a reason”. So I think I understand what you’re saying there. I am not a pessimist and I don’t see just the misfortune in this situation. I do, however, see significant danger in false cures of any kind… especially for an illness that affects 89 million women and girls worldwide.

That’s more than AIDS and more than cancer, as per Ohio State University Medical Center at:

Ohio State University Medical CenterThat is a huge number of patients affected!

As a health blogger, I see false cures on a DAILY basis from a wide variety of sources for numerous different chronic conditions (treatment centers that claim to “cure” conditions that have no cure, companies claiming to have nutritional supplements that “cure” various incurable conditions, people pushing a specific pharmaceutical drug as “the cure”, companies claiming to do medical research that do not disclose information patients are entitled to when making decisions about whether or not to participate in the purported research, people posing as doctors and befriending patients of online support groups with sizes approaching 1,000 for just one group, etc). I am bombarded with “cures”, scams, and shady deals every single day. Some come into my email (ever since I started this blog), some are in the form of ads which appear on various sites on the Internet, some are on social media sites like twitter and Facebook, some are posted to my blog and get rejected by me through comments moderation.

This is a far larger situation than any I’ve seen before. We’re talking about an illness affecting 89 million women/girls. We’re talking about mainstream media coverage. We’re talking about the boldest claim that could be made for endo: a “cure”.

In regard to the topic of the word “cure”, there is another blog comment that will be posting somewhere behind yours regarding this subject. (Please look for Melissa’s blog comment). It may take me a bit to get caught up but it should be posted relatively soon.

You also might find this link interesting:

Dr. Mark Perloe said in an article (see link below), “I am suspect of any claims of a surgical "cure."

Genetics of Endometriosis by Mark Perloe

Specifically with a condition like endo, which is known to be a recurring problem, how would the term “cure” be used for patients who may well feel better for x amount of time after their surgery? In other words, if a patient comes up symptom-free for x amount of time post-surgery, is she “cured”?

So, frankly, doctors can word it however they want but (in the case of endometriosis patients), it’s the patients who have to live with the symptoms and I know of a great number who are vehemently opposed to the notion that having a symptom-free period called a “cure”!

So surgeons can use that term all they want internally when corresponding to each other and I honestly don’t care a whole lot what words they use (even if I believe they could find a better wording).

However, issuing press releases and numerous articles claiming a “cure” to an audience of the general public is a very, very different story.

As far as a “cure” being defined as the patient “not needing any further treatment within a year of the surgery”… that definition (with all due respect) is preposterous when applied to endometriosis patients. I know many endo patients who’ve had at least one period of 1 year or more without symptoms… repeatedly. Does that mean they were cured multiple times? This makes no sense to me whatsoever.

What the EFA is to blame for (in my opinion) is the fact that they are spreading a variety of misinformation throughout the media (more than just claiming a “cure”) while simultaneously stating, “the EFA’s mission further addresses societal prejudices and misinformation about endometriosis”. How can EFA address misinformation when it is now the biggest source that is spreading it?? Also, the EFA is not to blame entirely. If you spend the amount of time that I have researching the situation, you’ll discover that many individuals and organizations are assisting with the promoting of EFA (even organizations whose own statements about endo being NOT curable are directly contradictory to the EFA’s public assertions that endo IS curable.

I never said the EFA was to blame entirely for the current situation. Frankly, I have seen and heard of too many others’ helping disseminate their info (which includes MISinformation) to think that this is even just about the EFA. This is more widespread than that.

I don’t disagree that money is needed for solid endo research. However, that does not mean that I agree with obtaining such funding in unethical ways. To me, it is irresponsible to solicit donations based on a cure when said cure has no scientific proof. There is no way to know what the EFA money will be put towards. Their mission statement is worded in such a way that it’s all but impossible to know what EFA plans to do with the funds raised from the ball alone. Remember, EFA says endo is cured. (See my previous blog comment where Dr. Redwine of the EFA Medical Advisory board talks of endo having been cured for 50+ years prior to 2003). If endo has been cured for decades, why does EFA needs to raise funds at all?

I don’t disagree with you one bit that legitimate endo research must be done. I don’t think anyone disputes such research requires a fair amount of money. Certainly patients can’t foot the bill. (Trust me, I know all about medical bills. They have hijacked my life).

Trust me, I am fully aware of the importance of media attention. In fact, I started my online petition for it last fall after the misinformation hit the press regarding Dancing with the Stars. If you read my blog (beyond this one post), you’ll see that I have blogged extensively about media. I know it’s important. That’s why it pains me so to see more misinformation disseminated - when we could be capitalizing on media access for endo.

Believe it or not, I think that getting media exposure IS possible without making “cure” announcements that have no proof, without running articles full of misinformation, and without doing or saying things that could be deemed as unethical in some way.

I have never seen ANY other major organization for an illness use the methods EFA has to get media attention. I choose to believe that extensive and accurate research IS attainable without resorting to such tactics.

EFA has shown it has a great deal of power for a new organization (or even for one that’s not new). Peer-reviewed articles don’t just magically get published. If they have the data to back up their claims, where is it? If they don’t, why are they generating a firestorm by claiming they have a cure?

While I am disappointed with the media (re: handling of EFA, Dancing with the Stars, etc.)… I am far more disappointed with the EFA. Remember, there website lists that they have a public relations firm working for them. Also, as Endochick had pointed out in an earlier comment, most of the media reports are similar if not identical in wording. If EFA issues a press release containing words like “cure”, then the average media outlet nowadays will not fact-check it and will take the info from the press release as Endochick surmised.

I wasn’t in the room when the information was written up but I believe Endochick’s press release theory makes a lot of sense. So, as far as spreading misinformation is concerned… I put that in EFA’s court. That’s my opinion. The press is just kind of along for the ride, I think.

Thanks for your comments, Alanna!

Jeanne

Jeanne said...

Hi Eve!

Thanks for stopping back here again. :)

As far as the wording you mentioned, these days wording is particularly important because:

--

1)

many people are getting into semantics and words can be easily misinterpreted... resulting in confusion

2)

there is an enormous amount of attention on endo right now due to numerous media reports (which, unfortunately, contain many blatant errors)
--

So if it seems like I’m being nit-picky, my intention is just to make what readers here see as clear as possible.

I’m sorry you have so many issues factoring in to your infertility. (So few patients seem to have endometriosis and no other health conditions, it seems)!

I’m sure that must be very frustrating to say the least.

Best of luck to you with fertility treatments!

Here are a couple of links that you might find helpful:

Roberta's Guest BlogNewsweek articleAs far as the topic of hysterectomy is concerned... I understand and appreciate that your mom had a very complex hysterectomy. I’m really sorry she had to go through that.

However, I don’t follow your logic that you “look to be following in the same path”. By that I mean that you and your mom are two different people and what happened to her doesn’t necessarily mean it will happen to you.

For example, my mom had a hysterectomy and she has endo but that doesn’t mean I am on the same path. In fact, my mom had very similar symptoms when she had her hyst to symptoms I have had for years.

I have numerous gynecological conditions myself. (Endo is just one of them).

There is no cure for endo. For 17 of the 27 years I have lived with endo, I have been involved with endo support groups (locally) and now this blog.

Over the years, I have spoken with hundreds of women who have endo. A fair number of them had a hysterectomy only to proceed to have symptoms after doing so.

Hysterectomies are very over performed in the U.S.

Obviously I am not giving you medical advice. My intention is to make sure you’re aware (along with anyone reading this) that there are alternatives to hysterectomy. Many doctors don’t identify all of the alternatives (or any, in the case of some doctors).

Here are two more links you may find helpful down the line:

Hers FoundationHystersistersI wish you the best of luck with everything!! Thanks for stopping by. :)

Jeanne

Jeanne said...

Oh endogirlie!

This makes MANY people very angry. I've been eating, breathing and sleeping this for a couple of weeks now and it's NOT fun.

It's pretty clear we're not the only ones upset. After all, this blog post just beat out my previously highest ranked post as far as the highest number of comments for a single post.

Clearly this EFA situation has gotten people's attention. My take on it is, why can't we get attention on endo for the right reasons?

Getting lots of media attention for a claimed "cure" while 89 million women/girls are suffering is not my idea of getting attention on endo for the right reasons.

I absolutely agree with you that this is misinformation. The irony is that EFA's site mentions addressing misinformation right on its homepage.

How can they address it if they are currently in the midst of the biggest misinformation campaign about endo I have ever seen?

Endo has been a misunderstood illness for many years. Numerous myths surround endo.

Media campaigns like this add fuel to the fire as far as confusing people and creating new myths ("cure") or reinforcing old myths (just read their press and you'll see what I mean!)

Endo is big money. Whether one is talking infertility treatments, expensive prescriptions aimed at trying to suppress symptoms, or the costs associated with surgery (laser or excision... with excision being far pricier and less likely to have insurance coverage), a great deal of money is spent on endo.

Excision surgery is very expensive. A fellow blogger Googled it and was telling me she found some astonishing numbers. (I simply haven't had a chance to Google it).

I used to watch Dancing with the Stars. After all of the stress I endured blogging about the endless media reports containing misinformation last year, I had no desire to watch this year.

If you read my blog from back then, you'll get an idea of just how upset I was.

You are quite correct that Lacey's comments about not needing surgery because her endo was caught early made no sense.

Not only did she not get a lap to confirm the proper diagnosis, but she started this myth about what "catching it early" can mean. How can you "catch it early" if you haven't even had a lap to diagnose it??

Julianne Hough announced her endo the day BEFORE her surgery.

Trust me... if you read my blog posts from back then, you'll see that I was beside myself.

Be sure to read Endochick's guest blog (attached at the bottom of this very post) regarding Dancing with the Stars and the crucial importance of a proper diagnosis.

Suspected endo is one thing. Diagnosed endo is a whole different matter.

In any event, I have a feeling if you read through some of my old blog posts, you'll find some topics that interest you.

Thanks for stopping by and good luck with your new endo blog!

Jeanne

Jeanne said...

Readers,

I'm sorry some of the comment replies are out of order.

Normally I don't get so backed up moderating comments but this post got bottlenecked.

I thought Blogger posted comments in the order they were posted to the blog initially but it appears that's not the case.

In any event, I address each reply to the person by name. So you may need to scroll up and down a bit but it should be clear which reply goes with which comment.

I've never gotten this behind on comment moderation before...

Thank you for your patience!

Jeanne

Jeanne said...

Melissa,

Thank you. It's interesting that you posted dictionary definitions of a cure because I have had some interesting conversations with various people (not just here on the blog but elsewhere too) about how "cure" is defined.

Like you, I look at a "cure" of a medical condition as being lack of further disease present (permanently).

As you pointed out, though, endometriosis tends to return even after a successful surgery that alleviates symptoms, sometimes in different locations than originally discovered.

In my mind, if endo is removed from one spot and it comes back anywhere (there or elsewhere), there was definitely no cure.

Any misplaced endometrial tissue is defined as endometriosis. So, any endometrial tissue that is located outside of the uterus is endometriosis.

As you said, it doesn't matter what the length of time is since the prior surgery. If endometriosis returns, the patient was not cured. Period.

I have heard of many women over the years who had endometriosis excised... only to have it return just like it did for you.

In my mind, NO... you were not cured simply because you managed to make it a year between surgeries.

Symptom relief of a temporary nature is NOT synonymous with a "cure". Even if you were not taking any medication in the interim, I certainly wouldn't say you were "cured" for the year in between surgeries.

I agree with you that one wouldn't have to take medication to further treat the disease if it were "cured" because a "cure" would mean that the disease was gone. When I say gone, I mean "not ever coming back". That, to me, is what a long-term cure means... that it will not return.

When people hear in interviews that Padma Lakshmi is "cured" or on the EFA website that endo is "curable", I don't think they picture remissions alternating with active endometriosis symptoms and surgeries as a "cure". They don’t picture a “temporary cure”! The EFA site talks of a “permanent cure”. The implication is that there is some other kind of cure that’s a “temporary cure”. I’m sorry but I have never heard of a “temporary cure”. That makes no sense to me.

I believe that language (the just plain “cure” term used in the many Padma Lakshmi interviews) evokes the same picture in most endo patients' minds (whether they believe the "cure" is a valid one or not)… a picture of permanent absence of the disease’s symptoms.

From the numerous people I've talked to, the general consensus seems to be that a cure would mean long-term, permanent relief of ALL symptoms... INCLUDING INFERTILITY.

Obviously, only certain women would be able to know if infertility were a symptom (after excision surgery) -- since some women would be taking medications that would prevent conception (regardless of why they were on the medication).

In other words, one could be infertile due to endo and not know it if she were not trying to conceive.

I agree with you that remissions do not equate to cures and that a cure is a premanent absence of the disease and its symptoms.

Jeanne

Mckay K said...

Jeanne this article reminds me of all the false medical reports I used to see on the evening news stating that there was a cure for arthritis. Years later and several hundred deaths from the proposed medication, the supposedly cure was banned.

My heart goes out to all the women suffering with endo whose hopes will be raised and money spent on these falsely acclaimed cures-all because of miss information.

Jeanne said...

Mckay K,

Women with endo go through so much. To have a "cure" waved in their face while they are struggling every day with the many symptoms of this condition is a cruel tease.

I think that for some, this will raise false hope and that can only lead to disappointment.

I think that for others, like me, who do not buy into this purported cure... all this does is generate anger and frustration.

I found the 2003 interview with Dr. Redwine (see link to it several comments up) quite fascinating in light of the fact that he sits on the Medical Advisory board of the EFA and was claiming back in 2003 that endo was cured for 50+ years by then.

I guess his definition of a cure varies wildly from mine because I see endo patients suffering all around me.

If there were a cure known for 50+ years all the way back in 2003, one would think that things would be different by now!

I truly wonder where the money will go when this organization claims a "cure". We are talking about a great deal of money. The star-studded Blossom Ball on 4/20 cost $6,500.00 per table and the ball room was at capacity.

Mulitiple celebrities were there. One can only imagine how much money was raised in donations that night alone.

Soliciting donations based on a "cure" when the "cure" does not have peer-reviewed medical research to back it up seems irresponsible to me.

It saddens me that endo has finally gotten this level of media attention, only to be stories filled with misinformation.

The only other time that I recall significant media attention for endo was when the two Dancing with the Stars dancers announced that they had endo and there was a great deal of misinformation spread at that time as well!

I hear stories that break my heart all the time regarding endometriosis.

A local girl called me who was 19 years old and had had 6 surgeries for endo by that age.

I got an email from a woman heading into a 4th surgery who had had a hysterectomy at the age of 20 and was having surgeries about every 2 years.

I have had other endo patients tell me horror stories about bowel obstructions (partial or full).

The one woman here locally who had a full obstruction had emergency surgery and could have died. She had to have a colostomy (which was later reversed). The doctors were sure that it was cancer because the mass was huge... until the biopsy came back saying it was endometrial tissue.

I have posted suicide hotline numbers on my blog because some women actually become suicidal because of endometriosis.

So when I hear people claiming to have a "cure", my expectations are high... as I believe they should be. This is not a word to be thrown around lightly.

As "My Endo Journey" (who works in oncology medical research) said, the word "cure" doesn't get thrown around lightly in her field.

Likewise, I don't believe the word "cure" should be thrown around lightly for endo (or any illness).If a medical cure claim is being made, peer-reviewed research should be made available. There should be articles in the medical literature about it. Things should go through the proper channels.

It saddens me that all of the attention on endo is being totally squandered. This level of attention could be put to such good use. Instead, the media attention on this is riddled with misinformation.

To me, this is a huge blow to all endometriosis patients and a step backwards. I have lived with endo for 27 years. No one wants a cure more than me. (Although I'm sure there are a great many tied with me for first place on that wish)!!

The thing is that I perceive this situation as detrimental to endometriosis patients simply due to the mass misinformation being distributed alone.

It is all very upsetting. I look around me at women who can't conceive, who have had numerous miscarriages (one blogger friend has had 9 miscarriages), who have debilitating pain, who have bleeding so heavy they are homebound at times... and I wonder how anyone can claim a "cure" without the medical evidence to back it up.

I believe endometriosis patients, who suffer so greatly, deserve better than this.

Thanks, Mckay K, for your comment. I hope you are doing well. I know you struggle with great adversity yourself and you always have such a positive attitude that helps so many through your blog.

Jeanne

Shelly said...

Thanks for this post.. every friend of mine thought I was cured after surgery, but I told them that it can´t be cured. And now I read your post. Brilliant.

In my circle of friends no one has ever heard about it before I was diagnosed with it. Even my doctor probably never heard of it, since he never send me to a specialist.

I am moving to the US (Denver) at the end of June and hoping I can find a brilliant doctor who can help me to a. get pregnant and b. later fight the symptoms.

Wish you ALL, all the best!
Shelly

Jeanne said...

Shelly,

Welcome! I just took a peek at your blog and want to thank you ever so much for posting the link to the endometriosis awareness petition!! That's how we're going to get more and more signatures... by getting that link posted as many places as possible. Thank you!

I am not surprised your friends thought you'd be cured after your surgeries. So many myths abound about endometriosis that many people misunderstand the condition.

Many people have never heard of endometriosis. Part of what I find so upsetting about all of the media attention on EFA and its "cure" claims is that many people are hearing the word endometriosis for the first time... and are getting misinformed about it from square one.

This bothers me to no end.

Many doctors are not familiar with endometriosis the way they should be.

I hope you can find a doctor who is highly skilled in endometriosis recognition and removal.

If you can find an endo support group after you move, ask group members if they know of experienced doctors who treat endo.

Support groups can be great for finding top-notch health care practitioners.

Good luck getting pregnant and managing your symptoms.

Thank you for your comment. I wish you the best of luck with your move and finding the doctor who is right for you. It's so important to have a highly skilled surgeon when having surgery for endometriosis.

By the way, are you on twitter or Facebook? If so, I'm @jeanneendo on twitter and I'm "Jeanne Endo" on Facebook.

I wanted to talk to you about your "scan or no scan" post because I have experience with nerve problems (neuropathy, phantom pain following nerve-cutting surgery). I thought I might be able to help you analyze the situation with your nerves a bit.

It's always nice to get comments from new readers. :) I hope you'll check out the rest of my blog and I look forward to looking more closely at yours.

Have a great day!

Jeanne

P.S. Have you tried alternative medicine? Acupuncture is my favorite! See my video and blog post about it. There are many other alternative medicine modalities that are helpful too!

Shelly said...

Jeanne! I just added you on my facebook! I am looking forward to all the info you got on the nerves!

I am gonna watch your video and read your blog about alternative medicine. I am still a newbie with this whole Endometriosis thing.

My doc in Holland blamed my pains on a sprained muscle. I moved to Germany a year ago and met my new doctor. I went there for the first time to get a new presciption of my birthcontrol. She talked to me and the first thing she said was that she suspected Endometriosis! The first conversation we ever had! Can you believe it? My doc in Holland had no clue! (But then again he didn´t have a clue about anything hahahaha)

btw. I think you turned your endometriosis into something 'good' (its not the right word, I know, but I think you understand me nevertheless), by informing others and being an expert on this topic!

I do hope that some day it will never have to be a topic again... xo

Jeanne said...

Shelly,

Thank you for sending me a friend request on Facebook. For some reason, Facebook is acting up.

When I click on the link to accept your friend request, it routes me to the screen where all the Facebook cause requests go. :(

Could you possibly try sending another friend request to see if we can get a link that works properly? I tried searching by name but that pulled up too many people.

We'll get it worked out. I don't know if what I have been through regarding neurological problems will help you or not but you never know.

Just click the YouTube button on my blog to see my videos. (I'm long overdue to make another one).

For the blog post, just search my blog for "acupuncture" and it should come right up. There are many other alternative medicine options besides acupuncture too.

Endometriosis can be overwhelming... especially when newly diagnosed and looking for information that's factual. (Sadly, there are many endo myths out there).

I'm sorry that your doctor in Holland did not properly diagnose you.

Unfortunately, the average endo diagnosis occurs 9.9 years after the onset of symptoms.

My endo started at 13 and I was diagnosed at 23. It's a very common time lag.

I'm glad you were able to get diagnosed by your doctor in Germany. It's great that she was able to suspect it so quickly.

Yes, I believe it... Endometriosis patients tend to go through multiple doctors before being diagnosed.

Thank you for your kind words.

I have lived with endometriosis for 27 years.

After my diagnosis in 1992, I found a local support group where I lived at the time and joined it.

What a wonderful group of women who role modeled for me how to support others! They taught me so much. I am so grateful that I found that group.

I started a local group in 2001 and volunteer as a support group leader. We stopped having in-person support group meetings last summer after 7 years of monthly meetings (there is a whole blog post explaining why) but we still keep in touch regularly by phone and email.

So I have been involved in local level endo support since 1992. I have learned so much from other patients!!

Anyway, the most effective way I have found to cope with endo is to take a negative and turn it into a positive!

By that I mean, I take all of the adversity I've been through and what I have learned from it and share it with others in the hope that it might be helpful for them.

So, yes, I do understand you and I appreciate you saying that.

I don't call myself an expert but I have got some life experience under my belt. :)

Oh. I tell everyone this but with your move overseas coming up I think it's especially important...

I always suggest that patients get a copy of their operative reports. If you get a copy of your report from the lap, it'll be helpful for you to see it and it'll be helpful for your new doctor.

With your move being such a distance, I'm sure you aren't going to want to try to retrieve your Germany records once you're already in the U.S. Just a thought.

I too hope that some day it will never have to be a topic again...

Jeanne
xo

perpetualspiral said...

I can certainly relate. There are a lot of "cures" out there for Fibro/CFS/ME as well, a lot of ppl claiming they're cured. Trouble is, what works for one person doesn't work for everyone. One person recovered does not a cure make. You can quote that if you want!! It is certainly frustrating when you have to work against the associations and organizations that are supposed to be helping you. This has also been the case with CFS and M.E. in the US and the UK. We just have to persist in our efforts to get the correct information out there, and directly challenge the "authority" when they have got it wrong. Continued strength,
perpetualspiral

Jeanne said...

perpetualspiral,

Welcome to my blog! :)

Yes, those of us who are chronically ill and who spend a fair amount of time on the Internet get to hear all sorts of claims, huh?

I have fibromyalgia and I know the "cures" you're talking about for that too. I'm less familiar with claims made for ME/CFS but I can use my imagination.

It is true that what works for one person doesn't work for everyone.

As you said, one person recovered does not a cure make.

Interestingly, Padma Lakshimi (Co-Founder of the EFA... who is quoted extensively in the media as saying she's cured) made some baffling comments in the following Newsweek article:

Padma's Newsweek article (warning: article contains endo myths)The comments that threw me for a loop were when she indicated that she was diagnosed with endo at 36 and has had FOUR surgeries. (She's now 38 years old). If this surgery is a "cure", why in heaven's name did she need 4 surgeries in 2 years? This is the woman who is telling the mass media she's "cured"?I don't have the energy to analyze the Newsweek article above but, again, it contains others misinformation besides the "cure" claims. For example, the article says, "endometriosis stops being a problem once menopause is reached and a woman's periods stop".

So I feel the need to mention that the Newsweek article contains misinformation since I am linking to it here.

YES! It certainly is frustrating when the very organizations (plural) that should be helping patients are spreading misinformation such as this.

Sadly, numerous endometriosis organizations have been promoting the EFA. This is mind-boggling when you consider that EFA claims a "cure" and these other endo organizations maintain there is no cure.

To have endometriosis organizations that maintain there is "no absolute cure" while attending the EFA ball and promoting it extensively in social media like twitter just boggles my mind.

When I noticed this happening, I questioned those who were promoting the EFA despite the fact that it appeared contradictory to their own organization's philosophy.

This wasn't just one endometriosis organization. It was several of them that were tweeting away about the EFA's Blossom Ball and articles about Padma Lakshmi.

It's alarming to watch these organizations doing EFA's bidding when each of them states there is no cure for endo on their sites.

I fail to comprehend WHY an endo organization that is supposed to be fighting to find a cure for endo would promote EFA which claims a "cure"!?

I'm sorry that you have encountered similar problems with M.E./C.F.S.

Yes, we just have to persist in our efforts to get the correct information out there.

Yes, we need to question people when we encounter misinformation.

Thank you for your supportive comment. Best of luck to you with your M.E./C.F.S. campaign. (Readers, you'll see me tweeting and retweeting regarding the M.E./C.F.S. campaign. M.E./C.F.S. awareness day is on May 12th and there's lots of tweeting to be done NOW to support the brave men and women struggling with M.E./C.F.S. Follow @perpetualspiral on twitter for more info).

Jeanne

perpetualspiral said...

Thanks for mentioning the Blue Ribbon for ME/CFS cause. There are lots of us on twitter campaigning for it and I've added some endo tweets (links to my blog post on endo with endo links and a link the the petition) to my tweeting :) Best to follow @blueribboncampaign4ME for campaign specific information, links and tweets - I tweet about everything, including my pets LOL.

You said you challenged the Endo organizations when they began supporting the EFA - did you get any response? I'm just curious. That is a seriously illogical move on their part - are they receiving funding from the EFA or something?

I've replied to a number of thankyous - including yours - in one post in the comments of my endo post on my own blog, reiterating how sick it makes me that endo is so under-recognized. I've named my blog after invisible chronic illness instead of CFS/Fibro because I want to include all ICI's, and that includes endo. I've linked to the endo blogs, and yours, in my blogroll :)

In times of emotional turmoil, we just have to keep plugging away, keep moving forward. Be like the tortoise - we can outlast the ups and downs of media misinformation and come out ahead in the end.

Strength,
perpetualspiral

Kelly D said...

Jeanne,
The endo community is so lucky to have you watching out for them. It makes me sad this organization seems to lack ethics. It is stuff like this that confuses consumers and creates distrust.

Jeanne said...

Kelly,

Thank you. I too am sad that the needs/best interests of endometriosis patients are not being served here at all, in my opinion.

It does look odd, to me, when the EFA (or people affiliated with it) talk about endo being "cured" one minute and then refer to recurrence in the next breath.

By any definition of the word cure, this makes no sense to me.

I agree that this causes confusion and distrust among patients, who as you so wisely pointed out are the consumers here.

Kelly, thank you for your support!

Jeanne

Jeanne said...

perpetualspiral,

My pleasure tweeting and retweeting for the ME/CFS campaign. I have noticed there are many on twitter involved. I posted an ME/CFS badge on my blog's sidebar last night.

(Readers, please note the badge in my blog's right sidebar regarding ME/CFS awareness day on May 12th.)

Speaking of May 12th, it is also Blogger Unite's Fibromyalgia Awareness Day.

Readers, we have been getting many retweets of endo messages (just search #endo to find endo-related tweets)... just use caution because some of them are from questionable sources.

(So please make sure you're retweeting accurate info. as the #endo tweets are not all accurate at this point since anyone can post them and more & more are discovering them).

Anyway, please follow @perpetualspiral and @Killandra on twitter for more info on how to support the ME/CFS cause.

Yes, everytime I saw an endo organization promoting EFA online, I questioned it.

Sometime when I have the time and energy do dig up the tweets exchanges, I'll fill you in with more details but let just say that 1 major organization who "maintains there is no absolute cure" for endo, promoted EFA multiple ways.

When I pushed back as to why they were supporting EFA's agenda when their philosophy is in direct conflict with their own, I was told they don't support any agenda and were just supporting "endometriosis awareness".

This made no sense to me but I found it curious that this organization had someone live tweeting from the EFA ball/fundraiser on 4/20.

I then pointed out that their org really can't cherry-pick which parts of EFA's agenda to support and pointed out that soliciting donations based on a cure when there is no substantial evidence for said "cure" is irresponsible.

They never wrote back after that but another endo org (see below) picked up that conversation where it had left off... which I found highly interesting since I hadn't even contacted org #2.

So anyway, another endo organization replied back with some sort of semantics game when they used the word "cure" and acknowledged that not all endo patients are "cured" this way but some are... or something along those lines.

Don't quote me because I'm going on memory and it's nearing 2:00 am. So those are just paraphrases on the kind of responses I got back.

So I found responses such as the above disheartening to say the least.

You pose an interesting question indeed (whether EFA is providing any funding to other endo orgs).

I don't have any evidence to show that... but, again, I see a massive conflict of interest that the one org sent one or more (I believe more) people to the EFA star-studded ball.At $6,500.00/table, one could speculate that their table fee may have been waived.

I saw your blog. Thank you for everything. :)

My new blog to replace this one will be out soon. Unlike the title of this blog, the new blog name will be more reflective about the numerous topics on which I write.

(I should note for newer readers here that endometriosis is NOT the only condition I write about and has just been consuming the blog lately due to Endometriosis Awareness Month in March and now the EFA situation).

So stay tuned because my blog will soon be renamed and transferred to Wordpress.

Yes, we need to keep plugging away. You are right. We have to move forward... even if the method for doing so isn't always immediately apparent!

Yes, we will be the tortoises who win the race. Good analogy! :)

Be well,

Jeanne

Jeanne said...

Shauna,

Thank you!

Jeanne

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