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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.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: My Perspective On Claims Made By Endometriosis Foundation Of America

78 comments

1 Jeanne { 05.04.09 at 12:51 pm }

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!

2 Shelly { 05.04.09 at 1:47 pm }

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

3 Jeanne { 05.04.09 at 2:15 pm }

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

4 perpetualspiral { 05.04.09 at 11:34 pm }

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

5 Jeanne { 05.05.09 at 2:53 pm }

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

6 perpetualspiral { 05.06.09 at 6:19 pm }

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

7 Kelly D { 05.07.09 at 3:24 am }

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.

8 Jeanne { 05.07.09 at 5:06 am }

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

9 Jeanne { 05.07.09 at 6:11 am }

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

10 ShaunaNo Gravatar { 05.28.09 at 1:56 pm }

Hi Jeanne!!!

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

Hope you are doing well honey,

Shauna <3

11 JeanneNo Gravatar { 05.28.09 at 2:00 pm }

Shauna,

Thank you!

Jeanne

12 Things that make me angry – Exploiting vulvodynia patients « Feminists with Female Sexual Dysfunction { 07.14.09 at 6:19 pm }

[…] and treatments of dubious validity for various chronic ailments. I absolutely love a post up at ChronicHealing in which the blog writer, Jeanne, picks apart suspicious claims made by the Endometrosis Foundation […]

13 KrystaNo Gravatar { 05.13.10 at 11:24 pm }

Jeanne,
I’m glad you posted this. Padma really needs to shut up and get her facts straight. Her doc should know there IS NO CURE FOR ENDOMETRIOSIS. I wish there was a cure .. I think she just wants to do this for publicity. It really angers me quite a bit. Is there anyway I can write to her or somebody??

14 JeanneNo Gravatar { 05.14.10 at 1:26 am }

Krysta,

My wish is that if Padma plans to continue speaking publicly about endometriosis (which she clearly intends to do) that she would consistently avoid terms such as “cured” and “miracle baby”. I got a fair amount of email today because Padma appeared on national TV this morning regarding endometriosis. In this particular interview, she did not state that her endometriosis is “cured” (as she has in so many interviews in the past).

Interestingly, one of the previous print interviews she did had gotten multiple angry comments from endometriosis patients who posted their feedback to the online article (including myself)… and the comments no longer appear even though the article still does show up online.

Lakshmi’s Pain

I find it curious that the article had several comments posted last spring and now has none listed. The article also states that she “once suffered from endometriosis.” I do not agree with referring to endometriosis in the past tense when there is no cure for endometriosis. If she is one of the patients fortunate enough to have a remission of symptoms, that’s wonderful. I do not, however, believe it justifies the use of the past tense. I believe this adds to the already abundant confusion about endometriosis.

As far as the use of the term “miracle baby”, I have had many friends with endometriosis-induced infertility express frustration and anger over on onslaught of articles about Padma Lakshmi’s pregnancy (because articles would couch it in terms like she got pregnant “against all medical odds” or “miracle baby”)… and because of the subsequent shower of articles regarding Padma’s newborn baby (which, again, make references to the “miracle baby” phrase).

All babies are miracles, the way I see it, and I can only imagine that any endometriosis patient and/or infertility patient out there is happy for Ms. Lakshmi in that she was able to conceive naturally contrary to the medical advice she had been given.

According to RESOLVE: The National Infertility Association, “about 40% of patients with endometriosis will experience some degree of infertility”. That’s less than half. That means that 60% of endo patients don’t. So, when Ms. Lakshmi gets interviewed over and over again with the “miracle baby” term used in the articles or when people say she “beat the odds” by conceiving and carrying to term, it sends out a message (in my opinion) that it is far rarer than it actually is for a woman with endometriosis to be able to get pregnant.

Anyone who reads my blog knows that I work intensely on infertility advocacy issues. So, I don’t want what I’m saying to be misunderstood in any way. If one is in that 40% affected by endometriosis-induced infertility, it is heart-breaking, emotional, frustrating, sad, and so much more.

I am in no way minimizing the impact of infertility on anyone (endometriosis-induced or otherwise).

What I am saying is that I am approached every single week by infertile friends who find all of the “miracle baby” hoopla surrounding Padma Lakshmi to be painful for them. I’m simply relaying what many women have shared with me.

Ms. Lakshmi’s doctor is Dr. Seckin. He Co-Founded the EFA with her. I cannot explain the wording choices used by either one of them.

I will abstain from speculating on Ms. Lakshmi’s motives. My primary concern is how endometriosis is portrayed in the media.

What angers me is that I have encountered many patients who are confused because of misinformation in the media about endometriosis (including statements made by Ms. Lakshmi).

As far as writing to anybody, I honestly don’t know how useful it would be to write to EFA/Padma Lakshmi. Maybe I’m cynical but I have reason to believe this would not achieve what you’re looking for.

I believe the best any individual patient can probably do is to speak the truth as she knows it, do her research, network with other patients, question things that don’t make sense, and essentially be her own best advocate.

Krysta, I understand your frustration. It is shared by many patients I know.

Jeanne

15 SarahNo Gravatar { 05.16.10 at 11:02 am }

I was annoyed with Padma on her interview the other day – she and the doctor both gave a poor description of endo (called it retrograde menstruation, which I’m pretty sure hasn’t been proven), but mainly my complaint was that they implied that you didn’t need a lap to diagnose it! And that simple drug treatments “if the disease was caught early” would be enough to stop the disease in it’s tracks.
They didn’t mention excision surgery as the only proper way to remove endo. Drugs can suppress the implants, but cannot remove the disease. Some may even make the problem worse (been there, done that).
I have a problem with them calling excision surgery a cure. I had surgery at the CEC just over a year ago and remain pain-free, but they told me that the endo they removed shouldn’t return but NEW DISEASE could grow at any time. Because there is NO CURE. So, it remains to be seen whether I’ll stay pain-free for years or even until menopause. And if I am pain-free, it doesn’t confirm that there is no endo, just none of the bowel-twisting, appendix-bursting, ovary-destroying, endo that was causing the pain before. I could still have spots around the pelvic area that don’t cause any pain. Because there’s no way to tell if endo is there or not UNLESS you have a lap. End of story.
Thanks for this post!

16 JeanneNo Gravatar { 05.17.10 at 3:15 am }

Sarah,

I saw the Today Show interview you mentioned:

Lakshmi opens up about battle with infertility (VIDEO)

I absolutely understand your frustration about the Today Show interview. I have heard from other endometriosis patients who shared your concerns (as do I). I am actually having difficulty keeping up with the messages I have been receiving on this matter.

Regarding Dr. Nancy Snyderman’s presentation of retrograde menstruation, it is a theory (there are others) but it is not “THE CAUSE” of endometriosis. The way Dr. Snyderman worded things, I took it like you did… as if she were presenting it as more than just one theory about what causes endometriosis. If “THE CAUSE” of endometriosis were known, we might be on our way to a cure by now… or at least better treatment options than what is currently available. Like you, I was struck by Dr. Nancy Snyderman’s manner of describing endometriosis. As I watched the computer animation of the reflux menstruation, I thought to myself, “why isn’t she identifying this as a theory”?

Here is what ScienceDirect said about retrograde menstruation in this article…

Endometriosis: the consequence of neurological dysfunction?

See below for quote from ScienceDirect:

“Endometriosis describes endometrium found outside the uterine cavity and is frequently associated with clinical presentations of chronic pelvic pain, dysmenorrhoea, dyspareunia and subfertility. It was originally attributed to retrograde menstruation with endometrium passing in a reverse direction along the Fallopian tubes into the peritoneal cavity though this theory does not account for the spectrum of intrapelvic findings”.

In the segment, Dr. Nancy Snyderman said in the voice-over about endometriosis that:

“It occurs when menstruation flow backs up through the fallopian tubes and spills into the abdominal cavity, leaving bits of the uterine lining on other organs”.

Here, Dr. Nancy Snyderman was referring to the retrograde menstruation theory. The way that Dr. Snyderman presented the retrograde menstruation theory, one might perceive that she was saying it is the cause of endometriosis. The medical community agrees that the cause(s) of endometriosis are unknown, however. Retrograde menstruation is one of several theories.

I will give Dr. Snyderman credit for stating that there is no CURE for endometriosis. This is counter to previous comments made by Padma Lakshmi about being “cured”.

Examples of instances previously in the media where Padma or someone associated with the EFA talked about being “cured” of endometriosis or that endo can be “cured”:

Padma Lakshmi battling endometriosis

Padma Lakshmi battling painful condition endometriosis

Endometriosis (Word “curable”)

This article says:

“Co-founded with supermodel, host of Bravo’s Top Chef, and endometriosis victim, Padma Lakshmi, the EFA is focused on providing hope to women and adolescent girls suffering from this disease, believing that every stage of the disease is treatable and, with the correct surgical techniques, even curable”.

Padma Lakshmi battling painful condition endometriosis

Dr. David Redwine, who sits on the Endometriosis Foundation of America’s Medical Advisory Council has been quoted as saying in a MedicineNet.com interview:

“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”

(See more details in comment # 42 above).

Going back to the Today Show segment, Sarah, you mentioned that they implied that you didn’t need a lap to diagnose endometriosis. Like you, I perceived the Today Show piece as having glossed over laparoscopies to the point of implying you don’t need a laparoscopy to diagnose endo. I took it the same way. While Padma referred to having multiple surgeries, the focus of her comments was on the fact that endometriosis was removed during them. At no point did anyone explain that a laparoscopy is the definitive method for diagnosing endometriosis. At the very tail end, Dr. Snyderman made a passing reference to “belly button” surgery and made it sound, to my ears, like “no big deal”.

Surgery is surgery and I detest when doctors make laparoscopies sound like “no big deal”.

I doubt if anyone other than endo patients or others who’ve had laparoscopic surgery for non-endo reasons had a clue what Dr. Snyderman meant by “belly button surgery”

Dr. Snyderman was (to my ears) nonchalantly glossing over laparoscopy without even naming it properly (unless I missed it) and she was talking about endo being found in what I believe she referred to as a “regular infertility workup”.

The term “test” was used during the segment. I don’t call a laparoscopy a test. I call it a surgery. To me, a person unfamiliar with endo watching that segment could easily be left with the impression that a “test” (i.e. a simple blood test, for instance) would diagnose the endo. Not true.

Also, Meredith Vieira asked an EXCELLENT question as to WHY there is typically such a delay from onset of symptoms to diagnosis. (The average delay is said to be 9.9 years from onset of symptoms to diagnosis). Dr. Snyderman had the perfect opportunity to explain that endo is only definitively diagnosed via a surgery called laparoscopy and that societal stigma often prevents girls from talking openly about their symptoms or the extent of them. (She did touch on docs not recognizing it as early as they should but somehow acted like this was understandable because for those with delayed diagnoses, the patient’s symptoms weren’t “extreme” enough to warrant further investigation — until they were ready to try and get pregnant). HUH?!?! (Don’t get me started). Worse, Dr. Snyderman suggested that cramps are normal for teens (HUH?!?!) and that only those with “EXTREME” symptoms were likely to get diagnosed unless they had reached an age when they were having trouble getting pregnant, at which point the endometriosis is commonly found during a normal “infertility workup”.

Where do I start? First of all, there ARE some women who get diagnosed with endo by laparoscopy in the course of a “workup” to determine the cause of their infertility. HOWEVER, according to RESOLVE: The National Infertility Association, “about 40% of patients with endometriosis will experience some degree of infertility. That means 60% don’t. So, Dr. Snyderman did not give an accurate answer to Meredith’s question about cause of delayed diagnosis at all… in my opinion. Many girls have VERY EXTREME symptoms (I know I did starting at age 13!) but don’t get diagnosed until much later (age 23 in my case… the textbook delay). It certainly wasn’t for lack of speaking up in my case!

I was so disappointed with so much of what Dr. Nancy Snyderman said in the segment. Her uber-brief reference to “belly-button surgery” at the very end of the clip (I detest that term… why not call it by its name: laparoscopy?) struck me as marginalizing things. I have grown weary of doctors who talk about laparoscopies as if they are “no big deal” (especially in the context of a national TV piece that was supposed to be educational and especially when not calling the surgery by its proper name). I’m guessing that Dr. Snyderman has never had one done on her or I’m guessing she wouldn’t be so dismissive and flippant about it!

It pains me to see endometriosis discussed in this way when for so many years women and girls have suffered in silence. Is it too much to ask for ONE decent feature on endometriosis in the mainstream media… one segment without myths, marginalizing, and a woman crediting “karma” for her ability to conceive and carry to term?! How the heck is that supposed to make those currently struggling with infertility feel? Seriously, does that not imply that they could get pregnant too… if only they’d go out and do some good deeds? I found that really insulting.

While I applaud Padma Lakshmi’s efforts to get the word “endometriosis” into people’s lexicon, I wish that statements by her and the EFA (in the press and on their own site) could consistently avoid terms like “cure”, “cured”, “miracle baby”, etc. While Ms. Lakshmi managed to avoid most of these topics in the Today Show interview, she has used such terms in the past… or, as in this interview, she has not spoken up to discourage the “miracle baby” comments when it’s brought up by others (without re-watching the tape, I believe Meredith may have used the term… though who can blame her when her reading material to prep for the interview likely said “miracle baby” on every story)?

EFA and misinformation:

MITnews: Reporter’s Notebook – Breaking the Silence

The above news story came straight from EFA’s website (today) as a link under news stories. Let’s just assume that the reporter for this story was confused and that it was a laparoscopic surgery that diagnosed Padma Lakshmi’s endometriosis rather than Dr. Seckin diagnosing her based on an “exam” where he entered the room to give her the “results”. Any endometriosis patient knows that if he were informing her that she has endometriosis, he would have to have already performed a laparoscopy. Yet there is no mention of her having had a laparoscopy here where it discusses Dr. Seckin telling her she has endo. Instead, it sounds (in the article) like she was at an office visit with Dr. Seckin. Some reading this who do not have endometriosis may wonder what my point is. Who cares where she was? Right? So what if she was in a doctor’s office waiting for “results” of an “exam” versus in a hospital having had a laparoscopic surgery?

As an endometriosis patient knows, the distinction between an office visit diagnosis (impossible) and a diagnosis via a laparoscopic surgery (done in a hospital) is like night and day. There is no such thing as a definitive office diagnosis of endo. Now, the reporter may have been confused and Dr. Seckin might have said something in the office such as, “I strongly suspect that you have a condition called endometriosis” and then proceeded to explain what a laparoscopy is and tell her that her fertility could be impacted by endo if that was, indeed, what she had. (I obviously don’t know what was said because I wasn’t there).

However, what I do wonder is how the Endometriosis Foundation of America thinks it’s acceptable to directly link to this MIT news story from the EFA website if something as basic as how endometriosis is diagnosed is muddled in the MIT link. Per the exact words from the screen shot in this post, “The EFA’s mission further addresses societal prejudices and misinformation about endometriosis in the medical community”. If EFA is so concerned about addressing misinformation, how can they list a link to an MIT news story that makes it sound like getting diagnosed with endometriosis is something that can be done in an office setting where a patient is waiting for “results” of an “exam”?? If EFA is truly concerned about addressing endometriosis misinformation, why is its own website linking to a news story that paints a misleading picture about how one would typically receive the news, “you have endometriosis”?

~~

I recently looked through the EFA website and was unable to find the word “curable” anymore. It appears to me that the EFA has back-pedaled on words like “curable” (which was prominently displayed on their site previously, as shown in the screen shots from their site that I included when I wrote this post in 2009). Also, Padma Lakshmi did numerous interviews about being “cured” of endometriosis (see links above for a few examples) but she, interestingly avoided the word “cure” in her Today Show interview last week.

With Dr. Nancy Snyderman stating that there is no cure for endometriosis on the same segment where Padma Lakshmi was interviewed combined with the fact that EFA appears to have removed direct references to words like “curable” from its website (despite still linking to articles that do still include the “curable” phrase, per above), my guess is that the EFA is electing (consciously, I’m guessing) to make different wording choices than when they hit the media aggressively last spring.

Interestingly, when Padma Lakshmi and Dr. Nancy Snyderman appeared on the Today Show with Meredith Vieira last week, Ms. Lakshmi indicated that she thinks her ability to get pregnant naturally despite what one of her doctors told her to the contrary was “karma” for starting “The Association” (referring to the Endometriosis Foundation of America). Karma??? Basically what she seemed to be saying (the way I heard it, anyway) is that she was somehow being rewarded by the universe (with pregnancy) for having Co-Founded the EFA! Hmm. If I were a woman with infertility (endometriosis-induced or otherwise), I would take exception to that statement. The implication being what? That those who are infertile haven’t done enough “good deeds” to “earn” the right to be pregnant?! That just blew me away!

Sarah, when you said that you had an issue with the notion that “simple drug treatments – if the disease was caught early” would be enough to stop the disease in its tracks, I think you were referring to Dr. Snyderman’s comment that doctors use birth control pills as the “first line of defense” for treating endo. (The implication from Dr. Snyderman seemed to be that throwing patients on BCPs without verifying they actually have endo is appropriate. Yet, both Dr. Snyderman and Padma Lakshmi seemed to be promoting the importance of early diagnosis – a noble cause. If a patient is automatically thrown onto hormones for suspected endometriosis – as I was prior to my first lap – is this not actually DELAYING a proper diagnosis via a laparoscopy??)

Drugs do not remove misplaced endometrial tissue. Yes, some drugs may worsen matters (been there, done that too). I have seen no peer-reviewed research to support excision surgery as the only “proper” way to remove endometriosis.

Moving on from the Today Show segment, the claims about excision surgery as a “cure” were made in a large number of articles in the press and the EFA website initially used the term “curable” but has since removed it. There is NO CURE for endometriosis, as you said. I have known of people who had excision surgery (including the place where you did) who went on to have symptoms afterwards… which was a big disappointment to them. I say this not to upset you in any way but because I know of people who have had excision surgery and it did not “cure” them. I’m very glad that you are feeling better since your surgery!

It is possible for endometriosis issues to recur after menopause:

Successful treatment of an aggressive recurrent post-menopausal endometriosis with an aromatase inhibitor

As you said, if you are pain-free, it doesn’t confirm there is no endo. A laparoscopy really is the definitive method for diagnosing endometriosis in the first place and checking to see if misplaced endometrial tissue is again an issue at a later time.

Thank you very much for your feedback! I hope your pain stays away and I’m sending positive energy your way! I’m afraid I’ll have to reciprocate with a blog comment tomorrow because it’s way past my bedtime.

😉

Jeanne

17 AllisonNo Gravatar { 05.17.10 at 7:56 am }

The interview on the today show the other day was disgusting to me. From the claims of endometriosis being caused by “retrograde menustration” (really?!?! Has this been proven yet?!?!?), it being diagnosed prior to a laparoscopy, to Padma’s “karma” baby (gosh, if only I had good karma, could I have a baby too…a living one?!?!?!). I love that endometriosis is in the media, but, not so much loving how it is being portrayed!

18 SarahNo Gravatar { 05.17.10 at 8:05 am }

Jeanne,
I don’t believe excision surgery is a cure – however, I do believe that excision surgery is far superior to laser surgery (burning off the implants) or whatever else non-excision surgery has been called. I had two laps prior to the excision surgery, and I believe the first lap not being done properly was the reason I ended up losing my rt ovary and tube in a second surgery. The endo was burned where the dr. could see it (she had no idea to look for implants that weren’t the black color either), and she only drained the endometrioma instead of removing it entirely from my ovary. In my second surgery, the dr. had the gall to remove my ovary and tube and NOT EVEN TOUCH the endo. Despite telling me beforehand he would remove any endo and “fix me”. The gall of that man still makes my blood boil to this day.
I think excision surgery gives the best shot at removing the majority of the disease. It is the most thorough method since it literally cuts out every piece of the disease they can find (although I have adenomyosis as well and they couldn’t remove that short of removing my uterus). The Dr.’s at the CEC were wonderful, and they told me that they were upset with the substandard care I had received until then and that my previous surgeries “had done more harm than good” in their eyes. That was a blow to hear. I was seeing a dr. (for my first surgery) that had done THOUSANDS of laps for endo. The second guy was the CHIEF of gynecology and gyn. oncology at a very well-reputed Baltimore hospital (we had an ovarian cancer scare due to the large endometrioma and I got referred to an onco). If my dr.’s were giving me sub-standard care at that level, what on are women getting from their ob-gyns? We KNOW it’s substandard because we’re the ones suffering without relief.
Also, I know it’s possible for recurrence of endo post-menopause, but since the majority of my pain seemed to be ovary-related, I am clinging to the idea that after menopause, I’ll remain pain-free. I’ll just have to keep my fingers crossed until then…
Thanks for your response to my earlier comment! I appreciate the thoroughness of your writing – the links and research you provide.

19 SarahNo Gravatar { 05.17.10 at 9:01 am }

Just would like to add that not all non-CEC dr.’s are giving sub-standard care. Just the ones I ran across. I emailed you more specific reasons why I think laser “burning” of endo is less effective than excision as well, so sorry for making that unclear here.

20 JeanneNo Gravatar { 05.17.10 at 1:30 pm }

Allison,

I was really amazed at the way Dr. Nancy Snyderman talked about retrograde menstruation. It certainly was not presented as the theory that it is and the implication by her, in my eyes, was that it is the cause of endometriosis. The cause of endometriosis is unknown.

If this is how the Chief Medical Editor of NBC presents endometriosis, I am really discouraged. Endometriosis patients have waited for so long to have endometriosis covered in the mainstream media and now every story I see ends up upsetting me. I know it’s not just me, either. I hear from enough fellow patients to know that I am not alone in my disappointment with the coverage of endometriosis. So, I share in your disappointment.

Also, Dr. Snyderman’s remarks about birth control pills being doctors’ “first line of defense” did sound to my ears like the equivalent of just throwing patients on hormones without doing a laparoscopy to verify that it is, indeed, endometriosis causing symptoms and not something else. There are many conditions with symptoms that mimic endometriosis. Jumping to conclusions that someone has endometriosis based on symptoms can be a mistake.

Here is a post by Endochick that gives a real life example of why assuming one has endometriosis (even if there are “classic symptoms” and family history) can be downright dangerous:

Dancing With The Stars – Endometriosis

Endochick’s sister has several relatives with endometriosis AND she had symptoms that could be indicative of endometriosis. Yet her doctor insisted that it should not be assumed that she has endometriosis. Then, it was discovered that she really had cancer! This is a perfect example of where making assumptions about endometriosis can be dangerous.

Finally, I am so very sorry that Padma Lakshmi made that remark about “karma”. I am also so, so sorry for your loss! When I heard Padma Lakshmi’s “karma baby” comments, I thought of all of the women like you who are struggling with infertility and have suffered pregnancy loss. I can only imagine what her comments felt like to you after your tragic loss. That “karma baby” comment was just stunning to me. I wonder if she has any notion of the pain that remark caused you and others struggling with infertility and pregnancy loss. I’m so sorry. Several infertile friends have commented to me in the last few days about how hurtful that “karma baby” comment was to them. Personally, I found it mind-boggling.

Like you, I love (intellectually anyway!) that endometriosis is in the media but I am truly concerned as to how endometriosis is being portrayed. In my mind, the whole point of getting endometriosis into the media is to create better awareness and understanding of endometriosis (which can lead to everything from better understanding of the illness for the loved ones of endometriosis patients to validation for the endometriosis patients to even big things like attracting attention to the need for endometriosis research). No one wants endometriosis in the media more then me. But is this the way?

Stories like the one on the Today Show, in my opinion, do not result in an overall increase in understanding of the FACTS about endometriosis. To me, what good is “increasing awareness” of endometriosis if stories are being presented in a misleading fashion that can actually lead to confusion? Getting people to have heard the word endometriosis is only helpful if they are then told a factual account of what it is and how it is diagnosed/treated.

Doesn’t it do more harm than good to imply that birth control pills are the “first line of defense”? Doesn’t this make it sound like there’s no sense troubling yourself with what Dr. Snyderman calls “belly button” surgery when you can just jump straight to birth control pills?

Putting aside Padma Lakshmi’s “baby karma” comment, does a story like this hurt endometriosis patients more than it helps them? Couldn’t endometriosis be presented in a more accurate way?

I have lived with endometriosis for 28 years. I have desperately wanted to see endometriosis covered factually in the media for a very long time. A segment like this doesn’t leave me feeling, “Hooray… how wonderful… finally some endometriosis coverage in the mainstream media”! Instead, it leaves me feeling that endometriosis was not covered well and that Padma Lakshmi has once again made remarks that have upset my many friends struggling with infertility.

It is incredibly frustrating and disappointing to see a golden opportunity such as an entire Today Show segment turn out like this. So much more could have been done with that time! Just think how much factual endometriosis information could have been covered in the time allocated for that segment. Seriously, I look at this as a wasted opportunity to get to word out about endometriosis facts. That saddens me.

What really saddens me, though, is that friends like you were hurt by Padma Lakshmi’s “karma baby” remarks.

Finally, with Allison’s permission, I would like to refer readers who may not be familiar with the story of Allison’s pregnancy loss here (to her blog). These two posts give some context for where Allison is coming from when listening to Padma Lakshmi’s “karma baby” remarks:

Thoughts and prayers are needed

In loving memory of Wyatt

I believe that endometriosis (and the infertility it can cause for some patients) should be covered in a factual and sensitive manner. My perception of the Today Show segment was that it contained multiple errors and an insensitive remark by Padma Lakshmi in regard to having a “karma baby”.

Jeanne

21 JeanneNo Gravatar { 05.18.10 at 5:30 pm }

Sarah,

I don’t believe excision is a cure either. The mantra I have repeated online ad nauseum is “there is no cure for endometriosis”.

Going back to the post itself… At the time I wrote this post, the EFA was using the word “curable” on its site (as per the screen shots in this post). Since then, the EFA has removed the word “curable” from its site. In my previous comment, I included links to a few of the many interviews where Padma referred to herself as “cured” of endometriosis. She no longer seems to be making such claims. If you look at the more recent interviews she has done (including the Today Show interview discussed above), she stays away from words like “cured”.

I don’t know if you are familiar with the “Career Woman’s Disease” myth from many years ago but I first read about it in the early 1990s when I was finally diagnosed with endo. The “Career Woman’s Disease” was a highly insulting notion that stereotyped all endometriosis patients as having a certain “Type A” personality, so to speak, that drove them to be “career woman”. (Don’t even get me started). While research studies later showed that endometriosis is NOT a “Career Woman’s Disease” but affects women from all socio-economic groups and backgrounds, Dr. Tamer Seckin made a video (copyright date of 2009) that reinforces the “Career Woman’s Disease” myth and he touted what he called a “Type E” personality (see Endochick’s post below which contains a link to Dr. Seckin’s video about “Type E” personalities):

“Curability”

There are 89 million women and girls worldwide who have endometriosis. This is a conservative estimate. There may well be more but this is the best stat I’ve been able to find at this time. Let’s assume that the 89 million figure is fairly accurate. Is Dr. Seckin trying to stereotype 89 million women and girls as all sharing the same “Type E” personality, as he puts it?! Is he trying to suggest that there is something about this illness which results in misplaced endometrial tissue that affects our personalities?! Is it right to generalize about a group of 89 MILLION patients and suggest that they all have a personality “type” of any kind? Seriously, this “Type E” personality video is just more evidence to me that Dr. Seckin has a tendency to cling to myths rather than relying on scientific research data. The very idea he proposes that all women and girls who have endo have a “Type E personality” is stereotypical, insulting, and just plain incorrect. The “Career Woman’s Disease” myth is so old that I had trouble locating documentation about it! Being 41 years old and having been diagnosed in 1992, I remember first reading about it many years ago and being disgusted.

Here is a passage from Endometriosis for Dummies about the “Career Woman’s Disease” myth:

“Career Woman’s Disease” myth

I was sickened when I saw Dr. Seckin’s video about “Type E personalities” (with E representing endometriosis). One can’t stereotype all endometriosis patients as sharing the same “personality type” and his video truly reinforces the “Career Woman’s Disease” myth that has been dis-proven.

I am very sorry your first two laps were not done properly. 🙁 Sadly, many women I know have had surgeries that would fall into the category of “not done properly”. I am very sorry you lost your right ovary and tube. 🙁 Any doctor who doesn’t know that endometriosis implants come in various colors (and are certainly not all black) shouldn’t be operating on endometriosis patients at all, in my opinion. Seriously, for many years doctors were trained that endometriosis looks like “powder burns” or “black-blue regions”. It sounds like you had a doctor who was still stuck in the notion that endometriosis is only “black”. That is very unfortunate. 🙁

When I discovered how little my first doctor knew about endometriosis (after I had stopped seeing him for treatment), I wrote him a letter. It wasn’t a mean-spirited letter. I went over the facts. I compared what he had told me with what a specialist told me ONE WEEK LATER. I say one week later because I was so very sick that Doctor #1 sent me to the ER with the intention of having me admitted. Once I arrived at the ER with a hand-written note from my gynecologist who wanted me admitted through the ER (long story as to why he suggested this but it stems back to his lack of knowledge about endo and the side effects of the very drugs he had prescribed for me), the ER staff laughed in my face. Why? They laughed because one of the LITANY of symptoms listed was “cramps”. The triage nurse said, “so, basically you’re here today for cramps?” She literally stifled chuckles as she asked me this question. I stared her down and said, “NO, I am here because by doctor sent me here”! After many hours of horrid tests, they pronounced me quite “normal” and did not admit me. I then immediately located a specialist and was seen within 24 hours after explaining my symptoms to the specialist’s receptionist. She got me in THAT DAY and a week later I was on the table for my second lap. Despite my first doctor’s insistent assertion that he had “cleaned me out” and that my symptoms could have “nothing to do with endo”, the specialist found more endo.

This was TEN MONTHS after my first surgery. My letter to my first doctor was intended to share what I had learned about my situation from my specialist in the hope that my first doctor would realize that he had misinformed me and hadn’t properly treated my endometriosis. My hope was that this might encourage him to refer patients like me out to a specialist in the future. Sadly, a few years later I encountered a patient who had also been improperly treated for endo by this same doctor (after he would have received my letter). Years later still, I met another doctor who had trained with this first doctor and who seemed to be aware of the level of arrogance of that first doctor who operated on me. (He was diplomatic about it but there is no doubt in my mind that he knew what Doctor #1 was like, ego-wise).

All I know is I tried my best and I couldn’t NOT write Doctor #1 a letter informing him that endometriosis WAS found despite his claims that it was “impossible” that the classic endometriosis symptoms I was experiencing were really endo when he had just ”cleaned me out”. I had to write him that letter for my own peace of mind. It wasn’t intended to be an “I told you so” type of letter. (It is true that I had located enough reading material on endo in my first 10 months after diagnosis to know that I *was* having classic endo symptoms that he insisted were NOT endo. It was NOT as easy for a patient to find information on endo in 1992 as it is now. My local library had NOTHING; the librarian helped me search and there was absolutely nothing on endo in that library in 1992. That library had always been an excellent resource for me and I was mystified as to why it had nothing on endo. That was eye-opening).

Sorry to digress. My point is that many women I know have encountered physicians who are lacking in knowledge about endometriosis. Without a doubt. Some, like the doctor you mentioned, who is under the impression that all endo is black, have no business operating on endometriosis patients at all… in my opinion. With your second doctor, it sounds like what he told you he’d do before surgery and what he subsequently did during surgery did not match up at all. I can understand why your blood would boil that a doctor would say “I’ll remove the endo and fix you” and then leave the endo alone while removing the ovary and tube!! I’m so sorry. 🙁 That must have been traumatic for you!

I’m sorry you had a cancer scare. They are no fun. I have had multiple cancer scares and I had cancer removed in 1996. It was found by accident during a laparotomy/major surgery (my endometriosis specialist was removing endo and my colorectal surgeon was doing a bowel resection. The two surgeons scheduled it so they could work as a team and I’d have anesthesia once rather than twice. However, no one was expecting to find a tumor on my appendix. The tumor had not been there – or had not been seen – in the surgery I had had two years prior).

Stories like yours break my heart and anger me at the same time. As far as why these types of stories happen, this is my observation from speaking with hundreds of endometriosis patients over the years. (I attended monthly endometriosis support group meetings from 1992 – 2008 before starting my blog. In 2001, I formed an endometriosis support group from scratch after getting married and moving to another area. We met monthly for 7 years with that group):

Some reasons doctors deliver sub-standard care to endo patients:

* Lack of knowledge – (i.e. either they were trained with incorrect/outdated information, they cling to endometriosis myths, or both).

* Unwillingness to refer patients for a second opinion/to a specialist – This often stems back to the doctor’s ego and unwillingness to acknowledge there might be a doc out there who has more expertise.

* Stubbornness, arrogance, egotistical outlook – sadly, many doctors think they know more than they do… in my experience.

* Lack of surgical skill – For whatever reason, some doctors simply don’t have the skill required to appropriately recognize and remove endometriosis.

As far as determining the efficacy of excision laparoscopy versus laser laparoscopy, my personal opinion is that it’s an issue for researchers to determine. For all of the claims made by the Padma Lakshmi, EFA, Dr. Tamer Seckin, and others about endometriosis being “curable” or “cured” by excision surgery (claims which they have since back-pedaled on), I have yet to see any peer-reviewed research to support their claims. I suppose that may be why they seem to be wording things more carefully these days.

Now, the general question of whether excision laparoscopy surgery is more effective than laser laparoscopy surgery is – again – a matter I believe should be researched. There may well be unbiased, peer-reviewed research on this matter. If there is, I haven’t seen it.

I have no doubt that your third surgery was far superior to your first two… simply because, as you said, you have (thankfully!!) obtained pain relief (and no one knows your body better than you!) and based on your description of your first two surgeons and the outcomes of those first two surgeries. I’m so sorry for what you went through with the first two surgeries. 🙁

I believe that scientific data based on peer-reviewed research is what’s needed to be able to evaluate efficacy for the general population of endometriosis patients (i.e. excision laparoscopy surgery versus laser laparoscopy surgery).

I want be be clear that I am not discounting your experience with your third surgery being better than your first two. What I’m saying is that I don’t think anecdotal evidence from individual patients can be the basis for determining one type of surgery is superior to another. You may know of research that I’m not aware of. I would love to see peer-reviewed research comparing the different types of surgery.

I have suspected adenomyosis as well. Since the endometrial tissue is in the muscle wall (behind the endometrial lining where it should be) in the case of adenomyosis, there is nothing they could do for mine either because I do not care to have a hysterectomy. (Readers: Please note that adenomyosis and endometriosis are two separate conditions. Also, please note that there is no cure for endometriosis… Hysterectomy is not a cure for endometriosis. There is no cure for endometriosis).

I’m glad you had a good experience with your last surgery. It is very unfortunate that the two surgeries preceding that were a different story. I absolutely hear you that there are doctors out there who are billed (often by themselves) as being more knowledgeable about endo than they are. Sadly, sheer number of surgeries performed doesn’t necessarily always translate to “better experience” with removing endo. While patients (for any illness) are typically taught to believe that the more surgeries a doctor has done, the better… and while extra experience in terms of greater number of surgeries is a plus for doctors who are getting experience “doing it right”, a high number of surgeries performed in the hands of someone who is NOT a highly skilled surgeon for removing endo simply means that doctor has more practice at “doing it wrong”. 🙁

Also, I have learned that a doctor’s title does not necessarily mean much. I’ve had plenty of horrid experiences at “well-reputed” hospitals. I absolutely hear what you’re saying. If doctors with fancy titles at well-reputed hospitals are delivering substandard care, what ARE many women getting from their doctors who many not have fancy titles or work at such well-reputed hospitals? I hear you.

In meeting hundreds of women with endometriosis over the years and hearing their stories, I have heard plenty of stories of substandard care… and some cases of out and out malpractice. (One woman I spoke to who went in for a lap and woke up having had a hysterectomy she never consented to… and, no, she didn’t have cancer). I hear what you are saying and there is ABSOLUTELY plenty of room for improvement in the level of care endometriosis patients are getting across the board. Some are getting better care than others and I am NOT bashing all endometriosis surgeons because there ARE some good ones out there. Are there enough “good ones” to meet the needs? Sadly, it would seem that there are not.

I’m crossing my fingers for you too.

Thank you for your comments! Thank you for your kind words. I try to use as many relevant links as possible to support what I say. There is so much misinformation about endometriosis floating around and it upsets me deeply when I see it. Having lived with endometriosis for 28 years now, it pains me when I see misinformation in the press about endometriosis. I know how much suffering endometriosis has caused me and I want to do anything in my power to spread endometriosis facts in order to counter the endometriosis misinformation out there. Honestly, I don’t often use that word: “suffering” because I don’t like to fall into a “victim” role. (As any endometriosis patient can attest to, there is most definitely suffering involved with have endo!!) However, I generally tend to stray away from language that puts me into a victim role. When I see press about “so and so has suffered with endometriosis”, I don’t find it to be empowering language. It may seem like I’m getting hung up in semantics but what I’m trying to say is I only used the word suffering above (which I rarely do) to make a point: that my years of “suffering” with endometriosis have made me very passionate about it. That is what drives me to delve into the research as much as I can and to try my best to spread endometriosis facts and question/point out endometriosis misinformation. That is what drives me to write in (with letters to the editor) about articles that contains misinformation… requesting a correction/retraction.

Thank you for your email and for clarifying. I have read comparisons between the two types of surgery from many sources. Unfortunately, I have not come across peer-reviewed research comparing the two types of surgery. I would love to see some unbiased peer-reviewed research on this. I am not for or against any particular form of surgery. I’m not an endometriosis researcher and am not in a position to vouch for one type of surgery or another.

My purpose with this post was to highlight the fact that the EFA claimed (past tense) that endometriosis is “curable” and Padma Lakshmi claimed (past tense again) to be “cured” of endo. Whether this organization has tweaked its language since this post was written or not, they hit the scene last spring soliciting donations for a cure and simultaneously claiming that endo was already (in Padma’s words) “cured”. In short, asking for donations to find a cure for a condition which you claim is already “cured” makes no sense. Apparently, the EFA has come to realize how inconsistent this sounded and has tweaked their language. I guess one of my many questions is why they used such language in the first place.

Dr. Seckin is a strong proponent of excision laparoscopy. I think “deep excision laparoscopy” is actually the most recent phrase used. The fact that Dr. Seckin is a proponent of excision is a separate issue from the question “is one form of surgical treatment for endo better than another?”

In my opinion, any doctor (not just Dr. Seckin) who claims that excision surgery is superior to laser laparoscopy should be able to produce peer-reviewed evidence of his/her claims. I believe this is even more important in the case of a doctor, like Dr. Seckin, who has made so many claims about the superiority of excision surgery (either him saying it himself or his foundation saying it). Maybe the peer-reviewed evidence is out there somewhere to support the “excision surgery is superior” theory but I haven’t seen it.

The bottom line as far as this post goes, though, is that the EFA made “cure” claims which they have since backed down from.

Jeanne

22 KaylaNo Gravatar { 06.18.10 at 2:30 pm }

Thank you for posting this blog. I am at work and will need to read all of the comments later, however, the main blog is right on the money with me. So many people in my life have said “just get a hysterectomy” and it is SO frustrating. A hysterectomy will not “cure” my endo and it will not stop it either. The cysts I have and the adhesion scars, etc, will ALWAYS be there and grow according to the estrogen in my body. I have been fortunate to have many cysts removed by laparoscopy, but I know there are likely more in places I would never expect. When the tissues under your breastbone hurt and ache and cause sharp pain and you know it is the endo, well that is something SO many people do not understand and I think they never will.

The media misrepresents so many things about endo and those who think they have it who have not had definitive surgery and pathology just confuse everyone more.

Endo is NOT “bad periods” or “bad cramps” and I loathe when it is described as such because it keeps those of us that suffer in the category of “why doesn’t she just suck it up like every other woman who has a period?”…

I’m rambling because I am emotionally charged…

Thank you again for posting this blog, maybe one day someone will actually understand…

23 JeanneNo Gravatar { 06.18.10 at 8:46 pm }

Welcome Kayla!

I’m glad you found my blog and hope that you’ll get a chance to take a closer look at it when you have more time online. The comments on this particular post are quite (unusually) detailed and include hyperlinks to pertinent videos and online interviews.

When I alluded to the “hysterectomy cure” topic, that was me talking (me countering that “hysterectomy cure” myth). In the 28 years I have lived with endometriosis, I have heard this myth too many times to count. In online and in-person support, the “hysterectomy myth” is always a hot topic. As you said, a hysterectomy will not cure endometriosis. There is no cure for endometriosis. To be clear, the Endometriosis Foundation of America never stated that hysterectomies cure endometriosis. When I included that list in the post, I purposely used “hysterectomy as cure” as an example of a classic endometriosis myth… but I was not attributing that particular myth to the Endometriosis Foundation of America. That list in the post was “issues I’ve seen confusion over”.

Words about endometriosis that can be attributed to the Endometriosis Foundation of America (in Spring 2009)… either on its website or in numerous articles in the press… included “curable” and “cured”. While they have since back-pedaled with their language, the fact remains that in Spring 2009 they were simultaneously soliciting donations to cure endometriosis and claiming that endometriosis was “cured” (in the case of Endometriosis Foundation of America Co-Founder Padma Lakshmi). Regardless of what language they elect to use in 2010, the fact remains that they spread misinformation in the form of a cure for endometriosis without providing any peer-reviewed medical research to back up their very bold claims.

Also worth noting is the the Endometriosis Foundation of America formed an alliance with Dial Corporation (see link below). If you login to Facebook right now and pull up the Dial page and “like” it, Dial will donate $1.00 to the Endometriosis Foundation of America. The Dial page is currently “liked” by 2835 people. You may be wondering, “so what?” Well, I have an issue with an organization claiming to champion the endometriosis cause forming an alliance with a company that markets products rated in the worst (7-10 high hazard) category for safety. How much sense does it make for a company that markets products containing ingredients linked to: cancer, developmental/reproductive toxicity, allergies/immunotoxicity… and other concerns for ingredients used in this product (neurotoxicity, endocrine disruption, organ system toxicity (non-reproductive), additive exposure sources, irritation (skin, eyes, or lungs), contamination concerns, occupational hazards, biochemical or cellular level changes, etc.

This “developmental/reproductive toxicity” was particularly concerning to me since so many endometriosis patients struggle with infertility and I would think the last thing an endometriosis patient struggling with infertility would want is to be exposed to such a product! For me, the very fact that the Endometriosis Foundation of America would form an alliance with Dial is problematic. I won’t even hazard a guess as to where the money raised will be allocated within the EFA.

Environmental Working Group’s results for searching the word “Dial”

I am very sorry for your pain. 🙁 It is true that so many people do not understand. I think the only people who truly “get it” are other patients who have experienced it firsthand. Loved ones may try hard to understand but no one seems to understand quite like a fellow patient.

As far as the media misrepresenting so many things about endometriosis, I couldn’t possibly agree with you more. When the media circus surrounding the “endometriosis announcements” by the Dancing With The Stars dancers occurred (in 2008), I was beside myself as I read interview after interview. The amount of misinformation spread was truly upsetting to me. (In retrospect, that was nothing when compared to how I felt reading the endometriosis misinformation in the media in the Spring of 2009… when countless articles proclaimed Padma Lakshmi to be “cured” of endometriosis).

As you alluded to, anytime someone who thinks she has endometriosis – but who has not had laparoscopic surgery (the definitive method for diagnosis) – states that she has endometriosis, it’s a slap in the face to endometriosis patients who have had surgery to confirm a possible/suspected diagnosis. It truly does lead to confusion. I will never forget how I cringed watching the search phrases that were routing people to my blog in the era of the Dancing With The Stars “endometriosis announcements”. Searches such as, “how did Julianne Hough get diagnosed with endometriosis before her surgery?” and “can endometriosis be diagnosed in a regular office visit?” were plentiful.

This link will take you to our petition: Create Endometriosis Awareness & Understanding. Anyone who supports the endometriosis cause can sign this petition. We have used it to pressure the media to acknowledge that it has spread misinformation. (See this post for an example of how we used the petition: Endometriosis Advocacy and the Media (Re-post)).

You’re right. “Bad periods” and “bad cramps” are not sufficient ways of describing endometriosis (which can have SO many more symptoms). These types of phrases seem to be used by some people to marginalize things. The notion that endometriosis patients should be able to just “suck it up” is just not right.

Again, the Endometriosis Foundation of America hasn’t made suggestions that endometriosis is just “bad cramps” or “bad periods”. They have listed numerous symptoms of endometriosis.

My issue with the Endometriosis Foundation of America and/or Padma Lakshmi, back when I wrote this post in 2009, was primarily with their use of language like “cured” and “curable” and the fact that they were promoting a particular type of laparoscopic surgery as the means of obtaining these results… without providing any peer-reviewed medical evidence to back their very bold claims.

While they have softened their language, the fact remains that they have been inconsistent even on their own website. Their decision to form an alliance with Dial was, to me, just another example of the Endometriosis Foundation of America not having endometriosis patients’ best interests at heart. Teaming up with a company that markets products ranked as being in the most hazardous class rated by the Environmental Working Group makes no sense to me whatsoever.

Sadly, many people hear “the money will be donated to the Endometriosis Foundation of America” and they think clicking on “like” for the Facebook Dial page is a great way to help the “endometriosis cause”. In the meantime, the donations are going to the Endometriosis Foundation of America. I, for one, wouldn’t trust them with a penny. So, the notion of clicking “like” on the Dial page (a page representing products I don’t believe in) strikes me as a marketing gimmick for Dial to get its logo seen and get “credit” for doing a “good deed” (i.e. donating to “charity”)… and yet another means for the Endometriosis Foundation of America (which I don’t trust) to raise funds. No thank you.

Kayla, if there is one place you don’t ever need to worry about “rambling”, it’s here! When I get emotionally charged, I do the same thing. (You may have figured that out by now). 😉

Thank you very much for posting a comment. I hope you’ll stop back. There are many endometriosis posts here (two years worth), actually.

While people who do not have endometriosis may never understand to the degree we’d like them to, I do believe that with increased awareness the general public will someday have a better understanding than they do now. In my mind, one of the very top priorities needs to be trying to prevent and/or call out endometriosis misinformation. Lack of information is bad enough but I believe misinformation is even worse.

Take care,

Jeanne

24 Vera RodriguesNo Gravatar { 08.17.10 at 8:56 pm }

Wow i so appreciate everything u wrote…

25 JeanneNo Gravatar { 08.18.10 at 2:24 am }

Vera,

Thank you.

Jeanne

26 karenNo Gravatar { 01.17.11 at 10:51 pm }

Hi Jeanne,
Can you recommend an endo doctor in NYC?

27 JeanneNo Gravatar { 01.20.11 at 2:34 am }

Karen,

No, I’m afraid I can’t recommend a doctor. I don’t endorse doctors in any geographical area. Honestly, I don’t feel qualified to make such endorsements… (among other reasons I don’t feel comfortable making recommendations).

Also, a doctor could be good for one patient and not another. Endometriosis affects different patients differently. Severity ranges widely. Some endo patients are affected by infertility and others are not.

The best thing I can suggest is to ask around, do your own research, try to locate other patients in your area to inquire about their experiences, ask lots of questions, compare what you are given as answers to what common sense dictates and what you have found in your own research, etc.

If something sounds too good to be true, it probably is. There is no cure for endometriosis. If you are told otherwise by any doctor in any area, I would suggest continuing your search.

Don’t be afraid to get second opinions (or more). I suggest taking notes in appointments, taking a loved one with you to help listen and take notes (if possible), and paying attention to any cues that a given doctor might be more focused on profit than on helping patients obtain relief.

Best of luck to you in finding the right doctor for you and your particular situation!

Jeanne

28 JeanneNo Gravatar { 06.14.11 at 11:31 pm }

Yesterday, someone submitted a comment (on this 2009 post) advocating the use of a specific supplement that has made claims of “curing” endometriosis. (To be clear, the product in question has zero to do with the organization about which I spoke in this blog post).

While the individual who posted the comment stated:

“I don’t claim to have found a cure , only something that has worked for me. I have No symtoms [sic] whatsoever”

… the bottom line is that the comment was promoting a supplement well-known within the online endometriosis community as having made claims that it can “cure” endometriosis.

Ironically, the commenter managed to drop the name of both the supplement and the pharmaceutical company that sells it… while accusing doctors who use medication and surgery to treat endometriosis of being “all about the money”.

While I agree that too many doctors are focused on endometriosis treatment as a money-making venture (and have written about this many times), I found it ironic that this commenter was portraying the “natural” supplement in question as superior to the types of medications and surgery typically used for endometriosis patients. The way I perceived the comment, it was implied that the supplement was automatically superior because it’s “natural”.

Without a doubt, there is massive room for improvement in the field of endometriosis treatment. Women need more choices and better choices than they have now.

However, the implication that a “natural” product is superior to these brings up questions like, “how is natural defined?”, “what research has been done regarding the ‘natural’ supplement?”, and “why is that pharmaceutical company using false advertising for its supplement?”

To be clear, I have absolutely nothing whatsoever against looking at “natural” options, alternative medicine, and complementary medicine. I personally have found non-traditional medicine very helpful.

At the same time, I know how incredibly loose the definition is for use of the word “natural” in marketing, I know the company the commenter mentioned engages in false advertising, and I absolutely will not allow my blog to become a free advertising zone for specific supplements, medication brands, etc.

Therefore, I will – needless to say – not be posting the comment on my blog. As I have stated on and off on my blog many times in the last three years, I do not wish to use my blog to plug any specific product, brand, etc. This is especially true when the product is marketed online as a “cure”.

So, if you submitted a blog comment to this post yesterday and are wondering why it hasn’t been posted, it is because I do not post comments that plug specific products, hospitals, treatment centers, doctors, etc. as a general rule.

I just wanted to post this comment clarifying all of that for anyone who might have missed it.

Thank you,

Jeanne

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