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.

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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.

You Only Get One Body!

You only get one body. I tell people this all the time when I'm worried about them overdoing or rushing recoveries. I'm trying to take my own advice...

I'm tired. After posting up to 5 times/day during March for Endometriosis Awareness Month, I am tired.

Then, I had the April 3rd colonoscopy (see previous post) and that wiped me out even more.

For whatever reason, I've lost 34 pounds without trying in about 4 months. I need to chill out. I need to listen to my body.

So, I haven't been posting much lately. I am trying to practice what I preach and implement the self-care I always talk about.

Some of you have seen me pop up on twitter, Facebook, etc. However, I have been way "quieter" than usual. Great progress has been made on the new blog (to replace this one) and I look forward to the launch (no date set just yet).

There will be blog giveaway prizes. So stay tuned!

I'm going to go conserve my energy now. There are many previous posts that may interest you if you're reading this.

You can:

1) Browse through randomly...
2) Look through my archives (see sidebar)...
3) Do a search of my blog using the search box (top left corner of blog, enter search term and click search... hitting enter won't work).

Happy reading!

P.S. We are still gathering names for the endometriosis awareness petition! See top of blog for link (too tired to make link)!

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

Colonoscopy Results (With Pictures)

If you're not one for medical pictures, this isn't the post for you. So I'll warn you up front and keep the more graphic pictures for later in the post (in case they'll make you queasy). I, personally, love it when doctors volunteer to give me pictures after a procedure or surgery. I find them fascinating. I also watched the entire colonoscopy on the screen while he did it. I was wide awake the whole time. In this particular case, the sedative medications for the colonoscopy appeared to do NOTHING for me and I felt the entire procedure. This isn't how it's supposed to work. I'll write more about this later.

Let's start with the good news. The colonoscopy is over, nothing terrible was found, the prep was better than past preps, and I'm starting to feel human again.

What do I mean by "feeling human again"? Well, let's just say I did not bounce back from this colonoscopy the way I did from the previous three. I'll write more on this later too.

First, I should give some history to put things in context and explain why I've had so many colonoscopies.

In the early 1990s, I began having problems with chronic diarrhea. There are times that are better/worse than others but I have had chronic diarrhea ever since about 1993. Certain foods are triggers and I try my hardest to avoid them. Somewhere in the early 1990s, I got labeled with the irritable bowel syndrome. (Please excuse the "psychosomatic illness" section in this wikipedia link. I decided that the wikipedia section called "Medical conditions that accompany IBS" was interesting enough to ignore the other section. So please just ignore it like I am).

Anyway, I have had diarrhea issues since 1993. No doctor has been able to help me. The only exception to that is that my pelvic pain specialist (who treats my interstitial cystitis) identified some foods that aggravate interstitial cystitis. Also, my acupuncturist has given some helpful tips on dietary changes I can make that are better for my overall health. The bottom line, though, is that I've had diarrhea issues since 1993.

For me interstitial cystitis and irritable bowel syndrome can kick each other off.



Rather than assume that everyone reading this is already familiar with IC, I decided it would make sense to include a brief video here. Since so many patients have both IC and IBS, I think it makes sense to tie them all together. (Not to mention that fact that I have many of the co-existing conditions listed on the wikipedia link above: IC, IBS, endo, fibromyalgia...)

I have blogged previously about the connection between IBS symptoms and IC symptoms:

Sunday, March 15, 2009 "Jeanne's Endo Blog": Interstitial Cystitis & Hot Peppers

The list below is not intended to bore you but to put things in context. Also, who knows? Someone reading this might be going through similar experiences and might find this helpful. So here goes...

Colonoscopies/intestinal surgery:

1993 - "normal" per gastroenterologist
1996 - partial blockage due to malrotated colon/paraduondenal hernia
1996 - hemicolectomy (bowel resection)... about 1 foot of colon removed
2001 - investigation for cause of rectal bleeding... no explanation found
2009 - investigation for cause of rectal bleeding and rectal clots (Dr's take on it below...)

I had my first colonoscopy in 1993 and that gastroenterologist said it was "normal".

Three years later, the doctor treating my endometriosis referred me to a colorectal surgeon. So in 1996 I had my 2nd colonoscopy. This colonoscopy, like the first one, was primarily to investigate why I was having such terrible diarrhea. (Doctors had tried numerous medications and none of them helped a bit).

The colorectal surgeon performed the 2nd colonoscopy in 1996 discovered a partial blockage during the colonoscopy. He informed me that I had a malrotated colon/paraduodenal hernia. Essentially my colon was twisted out of the position it should have been in. He also compared the films from the 2 colonoscopies and told me that the malrotation had been there in 1993 too. So the first doctor missed it.

Less than a month later, I had a laparotomy. The gynecologist treating my endometriosis and the colorectal surgeon who needed to do a bowel resection worked as a team. I am greatly appreciative that they set this up as a "double surgery" with both doctors present because it consolidated things and prevented me from having an additional surgery.

During my 1996 laparotomy surgery, endometriosis was removed, a hemicolectomy was performed (with a foot of my colon removed), and the doctors just happened to find a carcinoid tumor on my appendix so they removed my appendix.

For information on hemicolectomy, see this link: wikipedia's colectomy entry (with info on hemicolectomy).

The diarrhea issues continued after the surgery.

Photo above courtesy of Joe Lanman on Flickr

Fast forward to the year 2000. I began having cyclical rectal bleeding. The rectal bleeding was the exact same every month. It would begin exactly 2 days before my period and would continue throughout my period. At this point I should note that I know of other endometriosis patients who have this exact same thing happen... rectal bleeding that starts precisely 2 days before the period and continues throughout.

So in 2000 I went to a gastroenterologist to get checked out for the cyclical rectal bleeding. Let's just say this doctor was spectacularly unhelpful. (I no longer lived in the city where I'd had my hemicolectomy so I was just going to the doctor I'd been referred to). Anyway, this doctor was useless.

So I called my pelvic pain specialist's office and asked them for a name. They gave me the name of another gastroenterologist. He is the one who did my 2001 colonoscopy and the one I had last week. I really like him.

Back in 2001 when I first saw him, he had done a colonoscopy to try to find a cause for the cyclical rectal bleeding. The colonoscopy was normal. My understanding is that gastroenterologists go into a colonoscopy looking for things like Crohn's, colitis, diverticulitis, cancer, and polyps. Since I had none of those, he couldn't really tell me why I was bleeding. Anyway the cyclical rectal bleeding finally stopped on its own after 18 months.

Fast forward to 2008. It was about 5 months ago (or so) that I started having the cyclical rectal bleeding again. Exactly as happened in 2000-2001, it starts 2 days before I get my period every single time.

Initially, I ignored it. I told myself it was endometriosis-related and I just needed to deal with it. Then in January, a new symptom kicked in: rectal blood clots. This scared me. It scared me enough to tell my primary care physician even though I did NOT want another colonoscopy and I KNEW she'd want me to see a gastroenterologist ASAP about getting a colonoscopy.

So I went in and saw the gastroenterologist for a consultation. He was VERY thorough! He asked lots of questions, he read through my paperwork (with my complicated medical history), he didn't blow off my theory that the bleeding was somehow endometriosis-related, etc. He spent an enormous amount of time with me. He listened to my history with bowel preps (everything from profuse vomiting to fainting to passing 4 kidney stones in 2 days immediately after a bowel prep (citrate of magnesia). We discussed the various options for bowel preps. He actually listened to my concerns about various preps I've done in the past. (I've had 3 colonoscopies that required a prep plus 3 of my surgeries did too. So this was my 7th bowel prep).



As I blogged about previously (see related link at the end of this post), the prep I did this time was blue Gatorade, polyethylene glycol (known as Miralax), and dulcolax tablets. He skipped the citrate of magnesia that he would normally have had me do because of my history with it.

I have to say this is the best prep, of all 7 that I have done. I never fainted. I made it until late at night before vomiting came into play. Basically, I was doing so amazingly well (relative to other preps) that I decided to take some (not all) of my many medications. (I normally take most of my medications at night). Well, shortly after I took my medicine, I learned that they were not going to stay down and I shouldn't have bothered. Taking my medicine was a big mistake because once I started vomiting, I was unable to stop until there was nothing left.

Once I finally stopped vomiting, I focused on getting to sleep. I had about 4 hours of sleep and then it was time to head for the hospital.

Long story short, they gave me the standard sedation medication for the colonoscopy but (for whatever reason) my body did not respond. I should emphasize that this is abnormal. I wouldn't want someone to fear a needed colonoscopy because of what happened in my case. I have a history of unusual responses to anesthesia. In any event, I felt everything and it hurt. Once they saw I was in pain, they gave me more but it didn't do anything.

I didn't feel a thing in my 1993 or 2001 colonoscopies. The 1996 colonoscopy was really bad. This one was bad. The medication used for this was not the same as what they used in my really bad 1996 colonoscopy. So I don't know why but the medication literally did nothing for me.

OK. The pictures are coming up. So here's the picture warning...

I was awake the whole time watching everything on the screen. Thankfully it went fairly quickly. (It wasn't as long as the 1996 one that also hurt). So they took me back to my little room and let my husband in. Then the doctor came to talk with me. He brought the pictures from my colonoscopy.







OK. What did he say, right? Well, he was very happy with how my colon looked in general. In other words, he liked how everything but what he called the "entry area" looked. Unsurprisingly, that area had bleeding. That begs the question... why?





Why the bleeding? That's a very good question. Now, bear in mind that if a gastroenterologist isn't looking at endometrial implants that have migrated through the intestinal wall, he/she isn't going to say "it's the endometriosis causing it" because he/she can't see it. At the same time, this doctor was NOT dismissing my theory that it's no coincidence that my rectal bleeding (and rectal blood clots) ALWAYS start precisely 2 days before my period. My theory is that it's possibly either hormonal or immunological but somehow connected to endometriosis even if it's not related to visible endometrial implants.

I have encountered several endometriosis patients over the years who have rectal bleeding symptoms cyclically like me. Whether doctors connect the two or not, I can't help but think this is not a coincidence.

In any event, my gastroenterologist came about as close as he could have to agreeing with my theory. (I wish I had a videotape of the conversation because I can't do it justice). My husband and I scratched notes right after he left of a phrase he used when we got to the point of discussing the bleeding. He indicated there may be "some sort of pressure phenomena" that is causing the bleeding. He absolutely understands this is cyclical. Think about it this way... Each month at period time, what happens? There's inflammation. That inflammation could explain the "pressure" that he is tying to the bleeding. Once he brought up the phrase "some sort of pressure phenomena", I was reminded that I also have pelvic congestion syndrome. (Yes, I have so many conditions that I forget some of them).

In any event, the colonoscopy itself (except for the unexpected pain part) went as I expected. I have believed all along that the cyclical nature of this bleeding is striking and that it was unlikely a colonoscopy would find one of those main things they look for.

I'm not a scientist or a doctor and I can't prove that my cyclical rectal bleeding and blood clots are endometriosis-related. All I know is that no doctor can ever give me any other explanation when this happens and it's ALWAYS cyclical. Whether it's directly endo-related or somehow indirectly endo-related, I don't know. Please note my blog's disclaimer. I am not giving medical advice. I am saying that in my heart of hearts I do NOT think the timing of my bleeding is an accident.

Anyway, on to the "aftermath". I was not expecting an aftermath. With my first 3 colonoscopies, I was fine afterwards. This time, I did not bounce back as quickly. The CO2 gas that is used during the colonoscopy gave me lots of trouble this time. My abdominal pain was INTENSE. Also the nausea was INTENSE. I have never had this happen before. It was not fun.

I've had CO2 gas pain post-laparoscopy that was really bad in my chest and shoulders. This CO2 gas was really bad in my whole abdominal area.

It was a little scary because I have never had this happen before and I couldn't help but worry about why this time was different. It was the CO2. I started feeling human again yesterday. I never anticipated this. I don't know if it's relevant or not but I wonder if the gas was more of a problem due to the fact that my ileocecal valve was removed at the time of hemicolectomy. I really have no idea if that had any bearing or not.

Anyway, I apologize for the length of this post but I really felt that putting this colonoscopy in context with the others and with the hemicolectomy was important. At some point, someone may read this post and be going through something similar. So I think details matter in this case. I also wanted to be sure to mention (as I did earlier) that many illnesses commonly co-exist... such as IC, IBS, endo, fibro...

I think it's so important to mention that because I know there are people out there who have multiple illnesses and don't know anyone else who does. I think it's very important for people to NOT feel alone and to get connected with others who understand what they are going through.

Related link:

"Jeanne's Endo Blog": My Gastroenterologist is a Genius!

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