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

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UPDATED POST (at 9:19 am on Friday, October 31, 2008)

I have started a petition called:

Create Endometriosis Awareness & Understanding.

If you click the previous link, you will be routed directly to the online petition. I urge you to sign it!

The goal is to get a show like Oprah or The View to feature a story on endometriosis that explains ACCURATELY how endo is diagnosed, what amount of recovery time is needed, etc.

Please see my post about the petition I created last night:

Friday, October 31, 2008 Endometriosis Blog: Please Sign Petition To “Create Endometriosis Awareness & Understanding”!!!
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Tonight I opened my email and there was a Google alert email on the topic of endometriosis. I get these endometriosis alerts regularly.

I opened the email and found no less than 10 links about endometriosis!! (Generally these endometriosis alerts contain 1-5 links per email). Every single one of the 10 links was about Lacey Schwimmer reporting that she has been diagnosed with endometriosis and/or info about Julianne Hough’s endometriosis/surgery.

See my previous post regarding Julianne Hough’s announcement that she has been diagnosed with endometriosis.

TUESDAY, OCTOBER 28, 2008 Endometriosis Blog: Julianne Hough Of Dancing With The Stars Reports She Has Been Diagnosed With Endometriosis & Will Have Appendectomy

Here is one of the links from the Google alert on endometriosis:

TransWorldNews

I am puzzled.

I read through each of the links with reports of Lacey Schwimmer’s announcement that she has been diagnosed with endometriosis.

Lacey Schwimmer was quoted in these reports as saying (press releases dated today), “A few days ago, I started feeling very shaky, very weak, and I had awful cramps… I didn’t really know what was going on. I went to go get checked out today and I actually have the beginning onset of what Julianne has,” Schwimmer told The Insider. “It hurts very bad. Right now I’m insanely weak, and the room is spinning.” She went on to say, “I have medication that is taking care of it. We caught it at a very good time” and that she “will not require surgery”.

Here is why I am puzzled… The media reports are saying that she was diagnosed by the same doctor that Julianne Hough was diagnosed by. I am puzzled because she, like Julianne Hough, was diagnosed by her doctor as having endometriosis despite the fact that she had not had a laparoscopy to diagnose the condition.

According to The Endometriosis Association, “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices”.

According to The Endometriosis Research Center “endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive”.

So my confusion is how both of these women from Dancing With The Stars have been diagnosed with endometriosis prior to having had surgery or without having had surgery???

Those familiar with endometriosis are well aware that it is diagnosed via an outpatient surgical procedure called laparoscopy. I don’t understand how the doctor who has diagnosed each of these women is making these diagnoses without the benefit of laparoscopic surgery.

While I understand from news reports that Julianne Hough has a sister and mother who have endometriosis and while endometriosis can be a genetic illness (it runs in my family too), a diagnosis of endometriosis cannot be made based on family history alone.

I understand from news reports that Lacey Schwimmer sought medical attention because she was having similar symptoms to Julianne’s. I understand that her symptoms, as described in media reports, are consistent with endometriosis. The thing is that endometriosis cannot be diagnosed based solely on symptoms. There are other illnesses with symptoms that mimic endometriosis.

I am baffled as to how the physician who diagnosed both of these two women did so without performing a laparoscopy to confirm the suspected diagnosis. What about taking a biopsy to verify that the misplaced tissue was, in fact, endometrial tissue??

Laparoscopies are performed for reasons other than diagnosing endometriosis. Wikipedia describes laparoscopies as follows:

Wikipedia entry about laparoscopy

I have had endometriosis for 26 of my 39 years. I have attended endometriosis support group meetings at the local levels since my endometriosis was diagnosed in 1992. I had symptoms for 10 years before I was finally diagnosed properly by a laparoscopy.

I am not a medical professional. Even if I were, I am learning about these women’s diagnoses through media reports. Even if I were sitting in the same room with these two women and I were a doctor, I wouldn’t know if they were being properly diagnosed with endometriosis without doing a laparoscopy to find that out.

Endometriosis affects an estimated 5.5 million women in North America and it affects an estimated 89 million women worldwide. So it is certainly conceivable that these two women, who displayed symptoms of endometriosis, (and at least one of whom has a family history)… do indeed have endometriosis.

My concern is that neither of these women was diagnosed by a laparoscopy and they both appear on a show watched by many, many millions of viewers.

Many of these viewers undoubtedly never even heard of endometriosis before Julianne Hough and Lacey Schwimmer were diagnosed with endo.

My concern is that the general public may be getting misinformation about how endo is diagnosed… based on the news reports of Ms. Hough and Ms. Schwimmer.

Numerous websites imply that Ms. Hough’s appendix was removed pre-emptively because cysts might have formed on it at a later date. Huh? Maybe there are some facts that the media is not reporting but that sounded odd to me. Plenty of women with endo hang onto their appendixes unless they become covered in endo.

Julianne Hough announced she was having an appendectomy on the air the night BEFORE her surgery. News reports also indicate that Ms. Hough had symptoms for 5 years but had not had a laparoscopy prior to this week. Therefore, the surgeon had (by all accounts) not yet seen her appendix before this week’s surgery.

Ms. Schwimmer’s diagnosis is described in numerous links as having been “caught early”. The way that it is worded implies that because her endometriosis was caught early, she does not require surgery at this time. Fair enough.

She said (as quoted above) that medication is “taking care of it”. I don’t understand how her endometr
iosis symptoms are likely being managed well enough to make informed treatment decisions when she just got diagnosed today (if the media has the timeline straight)… WITHOUT a laparoscopy (considered the means for diagnosing endometriosis definitively by doctors and endometriosis organizations around the globe).

I understand that her interviews repeatedly mention her endo was “caught early”. However, in my experience, women who suffer endo symptoms severe enough to send them in to their doctors for answers cannot possibly manage their symptoms within a matter of 24 hours or less from diagnosis… regardless of how “early” it was “caught”. Sure, she may have been given a strong painkiller that has alleviated the type of pain that sent her to her doctor. I just don’t understand the way her statement to the press was worded.

I don’t mean to sound critical of her (or Julianne Hough) in any way!!! I’m just confused about the wording of things. It may well be that she is quoting her doctor verbatim. I have no clue. My concern is how the public will process these announcements. I am just concerned that the general public may be getting a skewed view of how endo is diagnosed, how it is managed, etc.

The medical condition of these two women is their personal business. Since they have both announced their diagnoses to the world, however, I believe it is important to use this as an opportunity to inform the public about endo. I worry that the media statements that have been made could be giving the public a fuzzy picture, at least, and maybe even a misleading picture, at most, on what sort of impact endometriosis typically has on patients properly diagnosed with it via laparoscopy.

It is very unfortunate that these two women are experiencing such symptoms at all… much less during an intense, physically demanding competition. They may well both have endo.

I just worry that neither one seems to have been diagnosed by laparoscopy. This could confuse the millions of viewers of Dancing With The Stars.

This is an opportunity to EDUCATE the public about this illness. I sincerely hope that is what will happen!!!

I’d like to add a comment that was posted on a website by a woman named “Heather”. It nicely sums up the opportunity we have for media attention on educating the public about endo. This comment was posted on the following site:

Fancast: Inside TV

Heather posted this comment to Julianne Hough:

“I am so sorry to hear that you were diagnosed with Endo. However at the same time you are so very blessed to have been diagnosed at such a young age. I wasn’t diagnosed until I was 34 after almost 20 years of suffering with the disease. So many doctor’s told me what I was experiencing was just normal heavy painful periods. However my pain was throughout the whole month with also extremely painful ovulations. Unfortunately being that the Endo did not get diagnosed for so very long I am now at stage 4. Endo is on just about every organ. Bladder, liver, ovaries etc….. Thankfully after a few years of trying my husband and help from fertility treatments we conceived our miracle daughter Sophia Izabella who is now 6 years old.
I know you are newly diagnosed but Julianne you have a voice for this disease. So many millions of us women have tried to get the word out about Endo. We want to get the word out about it so, so many teen girls and women don’t have to suffer for so many years before getting diagnosed. I have written tons of letters to Oprah, The View and many others in hopes of getting the word out but no one seems to care. It affects millions and millions of teen girls and women. Sadly even my own OB/GYN isn’t very educated about it. Pretty much she says all she can do is put me on continous birth control pills to help. Anything you can do to help would be so appreciated. I would be more than happy to help you in anything you can do. Thanks so much Julianne

Posted by Heather | October 28, 2008 4:59 PM

Heather brings up a very good point. High-quality information about endometriosis should be disseminated to the public! Heather mentions having contacted Oprah and The View. These shows have predominantly female audiences and would be perfect vehicles for accurate information to be shared with the public. Ideally, the dancer or dancers would be interviewed on air with renowned gynecological surgeons who can speak to how to properly diagnose endometriosis and whether such physical activity is (in Julianne’s case) advisable shortly after surgery.

It’s enough to make me want to start a letter-writing campaign to Oprah and The View requesting that they feature endometriosis as the serious illness it is… and feature experts in the field who can speak to the complexities of this illness which baffles doctors and patients alike.

My acupuncturist tells me that in Traditional Chinese Medicine, “endometriosis” is actually 6 different illnesses. There are many different symptom sets for endo patients. Some women have no pain and discover their endo via a laparoscopy searching for the cause of infertility. Some women suffer debiliating pain. Some women have extreme pain and infertility. Some women with endo are within that spectrum somewhere.

I worry that the sound bites and gossip magazine reports on Julianne Hough and Lacey Schwimmer may do more harm than good IF someone respected from the medical community doesn’t step up and say things like “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices” or “endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive”.

Or perhaps representatives of The Endometriosis Association and/or The Endometriosis Research Center could issue a statement to the press about the importance of laparoscopy in diagnosing endo???

The typical endometriosis patient who is NOT a celebrity could write letters to Oprah or The View until the cows come home and may never get endo featured on these shows.

If, however, one or both of these women from Dancing With The Stars were to appear on one or both shows (ACCOMPANIED BY PHYSICIANS SKILLED AT DIAGNOSING AND TREATING ENDOMETRIOSIS), such a show just might happen.

Short of that happening, I think it would take a massive letter-writing campaign to one or both shows to get proper coverage of this illness. Women with endometriosis suffer so much! They deserve some validation, understanding, compassion, and awareness of endometriosis!!

So if you or a loved one has endo and wants to help me organize a letter-writing campaign, please post your comments here. If we work as a team, we can turn this unfortunate situation for Ms. Hough and Ms. Schwimmer into an opportunity to educate the public a
nd help endo patients!!

I would greatly like to hear from as many people as possible about the letter-writing campaign.

Who’s in????????

This article was posted by Jeanne via “Jeanne’s Endo Blog” at www.endendoat.blogspot.com.

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


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

6 comments

1 TRACYLYNN { 11.03.08 at 6:52 am }

Thank you for this blog…I have been upset from the time I heard about it. I have suffered from endo since age 11 it took many a tests and years of pain before 5 years ago my doctor diagnosed me via laporoscopy (the only true diagnosis) for this uncurable disease. You are so right that these dancers are a voice for us, yet their media attention presents it lightly. I loved your blog. Thank you. My friends and family thought i was gonna have a heart attack because I was outraged at how this has been presented. Every bit of your blog is true and facts backed. This needs to get out. These dancers are strong to be dancing in pain. I know every women with endo has had days she can’t get out of bed. Endo is not just a case of bad cramps and bad genetics. It is a real disease. THANK YOU FOR THIS BLOG…LADIES WHO HAVE ENDO LET’S GET OUT THERE AND LET THE WORLD KNOW THE TRUTH.

2 Jeanne { 11.03.08 at 3:05 pm }

Tracylynn,

There’s no need to thank me; I’m glad you found us!

The process most women go through to get a proper diagnosis of endometriosis is downright grueling. Most endometriosis patients go from doctor to doctor in search of answers and relief for quite awhile before they finally have a laparoscopy to diagnose their condition properly.

Having participated in endometriosis support groups at the local level since I was diagnosed in 1992, I have heard this same sad story over and over again!!! The average endo diagnosis occurs 9.9 YEARS after the symptoms begin. You are correct that laparoscopy is the only proper way to diagnose endometriosis at this time. As you mentioned, endometriosis does not have a cure. (Though we certainly hope that someday that will change)!

I honestly think, based on what I have read in the media (which is the only thing I have to go by), that these two women from “Dancing with the Stars” are probably unaware that laparoscopy is the only means of properly diagnosing endo. I have read reports that each of these women sees the same doctor. If this is true, it might explain why both women appear to have been given misinformation about endo. I only have media reports to go by and I’m sure there is much more to the story than what I’m hearing or you’re hearing through the media.

The thing is that this is what the general public (including you and me) are hearing! You and I perceive the media message the same way. It’s not just us!

If any of these magazines or websites did proper fact-checking, they would know that endometriosis is only diagnosed by laparoscopy. It would appear that none of these media outlets has taken the time to check! This is a serious illness affect million and millions of women. Yet the media can’t seem to bother to do any research on it. Any news outlet doing basic research on endometriosis would quickly discover that laparoscopy is the means to diagnose endometriosis. In my mind, it is the reports’ responsibility to check the facts before going to press.

It sounds to me like these two women are simply relaying what their doctor has told them. They are quite young. When I was diagnosed, I didn’t know that laparoscopy was THE way to be diagnosed. I knew from my doctor that it was necessary in my case to do a laparoscopy to check for endometriosis, based on my individual symptoms. Back when I was so young, I don’t recall coming out and asking if it was the ONLY way to get a definitive diagnosis.

I didn’t take having surgery lightly. At the same time, I trusted my doctor to be serving my best interest. I was naive enough to assume that I was being given all of the information available to the medical community when I spoke with my doctor. I learned later that there was a great deal that I wasn’t told and that some of the info my first doctor had given me was incorrect!

It took lots of hard work on my part reading and talking with other endometriosis patients to figure all of this out. It took finding an organization of women who have endo to compare notes with, to ask questions of, and to listen to… That all took time.

These two women are very young. They are probably taking what their doctor tells them at face value. I know I did when I was approximately their age.

I’m glad you like the blog. I hope you’ll be back to visit. 🙂 I know what you mean about friends and family taking in your reaction to how the media has handled this. My husband called me from work after hearing on the car radio that Julianne Hough had been diagnosed with endo. I had heard it the night before on “Dancing with the Stars” but hadn’t had a chance to mention it to him because he was logged into work that evening. (You see, my medical bills are so outrageous that he works 7 days a week to try to pay our bills. My medical is our biggest expense). Anyway, he called me to see if I had heard. I had heard alright. Even though he was at work, I couldn’t restrain myself from briefly sharing my reaction with him. The first point I made, of course, was that Julianne Hough announced her endo the night BEFORE the surgery. I was blown away by this because it was implied that she had never had a laparoscopy before and I knew how the public would perceive this. The general public is so misinformed about endometriosis as it is (those who have even heard about it) that any confusing/misleading messages the public hears are hurtful to endometriosis patients everywhere.

I honestly believe these women presented the information the way it was presented to them… based on quotes attributed to them in the media. Unfortunately, the implication was that simply going to the doctor and presenting with certain symptoms can result in a swift diagnosis. This is simply not accurate. As any endometriosis patient can probably tell you, diagnosis almost always requires a fair amount of effort on the part of the patient. It may require persistent reading, asking questions, pushing back to doctors who aren’t responsive, comparing notes with women who have already been diagnosed to know which questions to ask, etc.

The notion that one can just walk into a GYN’s office and walk out with an endo diagnosis is beyond misleading. It is incorrect.

I agree that these dancers must be strong to be dancing such demanding programs while dealing with such symptoms. I meet women all the time who make heroic efforts to work hard, excel at work, manage a household, etc. Sometimes I marvel at what endo patients are able to do despite their pain and other symptoms!! While symptoms vary from patient to patient, most endo patients I have met work extra hard to go “above and beyond” expectations, to “prove” they are not lazy, to demonstrate that they can manage their symptoms and continue to maintain a positive attitude most of the time.

According to my acupuncturist, Traditional Chinese Medicine views “endometriosis” as SIX different illnesses. Symptoms can vary widely from patient to patient. I am not in any way trying to minimize Ms. Hough’s or Ms. Schwimmer’s symptoms. It’s just a fact that some women with endo are much sicker than others… and functioning levels are tied to symptoms more often than not.

Yes, some women are able to push themselves really hard despite endo. This is not necessarily such a good thing! I look back at how hard I pushed myself and it’s no wonder I am so sick now. I have many of the illnesses that are correlated to endometriosis. I often wonder if I would have less of these illnesses if I hadn’t tried to FORCE myself beyond my body’s healthy level of capabilities. I was always trying to “prove myself” and show how strong I was. I regret it now because I believe my imbalanced approach at managing my symptoms contributed to my poor health now.

I try to share what I have learned with other women so they don’t make the same mistakes that I did. Self-care is so important. I worry about these women in the public eye… Their every move is scrutinized by the media. The pressure for a “Hough vs. Hough” showdown on DWTS is a perfect example of how a woman can actually harm herself trying to prove something or trying to force her body to recover from surgery before it possibly can.

So I worry for these young women. I’ve been in similar shoes and I’ve done things too soon after surgery and lived to regret it. Also, I worry for all endo patients because if these women push themselves too hard it sends a message to endo patients that they should be doing so too (which may not be the healthiest way to go)! In addition, if these young women push themselves too hard, it sends the message to the public that “if they can do it, anyone with endo can do it”. This is not a healthy or accurate message for the and can hurt women’s reputation within their own families!!

As it is, many women force themselves to work more hours tha
n their bodies ideally should be working or force themselves to attend social gatherings they really can’t afford to attend… to please other people and live up to their (often unrealistic) expectations. This just adds fuel to the fire for friends and relatives who very mistakenly view an endo patient as “lazy” or “anti-social”. Endo patients are under enough pressure. Being expected to keep up with dancers and world-class athletes who may or may not have a comparable severity of symptoms is grossly unfair to endo patients.

The vast majority of endo patients I have met try to overcompensate by pushing themselves beyond healthy limits. This tends to make them even sicker in the long run. I have learned these lessons the hard way!! I used to work 80+ hours a week DESPITE my endo. That was a very unhealthy choice! I was 24-25 years old at the time and because of my youth and stubbornness, I was able to force myself to work that kind of schedule. It was a grave error that I regret deeply.

Hindsight is 20/20 but I try to share my story to prevent unnecessary suffering for others. “YOU ONLY GET ONE BODY!”, I often tell people! (I don’t always practice what I preach but I try to listen to my body. It’s hard)!!!

Some things can serve as cautionary tales and other things the endo patient needs to learn for herself. Learning these lessons takes TIME. I try my best to share factual information based on both personal experience and extensive interaction with fellow endo patients. I have done lots of reading, attended lectures and seminars, and spent countless hours just sitting and talking with other endo patients. I do everything I can personally to get the word out but I am only one person. That’s why I do whatever I can think of to educate others and learn from them too. I attended endo support groups in 2 cities before starting a group in a 3rd, read everything I could get my hands on (including medical journals written for doctors), read other blogs and websites, I have read books and newsletters, quizzed numerous doctors in 3 cities, compared notes with many other endo patients… I have met many other endo patients just as proactive, just as determined, and just as hungry for information as I still am after 26 years of dealing with endo. It is a crying shame that there isn’t more information and better quality information available through women’s own doctors. I have learned more from fellow endo patients than from my doctors, as a general rule. This should not be the case. Plenty of endo patients have days where they can’t get out of bed. You are right. Also, endo is not just a case of “bad genetics” or “bad cramps”, as you mentioned.

It is a VERY real disease affecting millions of women. Endo patients have been mistreated by the medical community as a whole for years and years. Again, I’m really glad you like the blog. If it can help just one person out there with this terrible disease, then it’s worth it.

YES, LET'S GET THE WORD OUT LIKE YOU SAID ABOUT ENDO!!! Let's get the truth out there for all who are willing to listen. LET'S GET EVERY FRIEND & FAMILY MEMBER WE CAN TO SIGN THIS PETITION AND GET ENDOMETRIOSIS COVERED PROPERLY BY THE INTERNATIONAL MEDIA!! This petition may be a start:

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

Please share this petition link with anyone who will listen!!! Anyone who wants to help endo patients and increase awareness about it can sign this petition! It’s not just for endo patients. Those who have signed the petition have left insightful, well-informed, and sometimes heartbreaking comments when they signed their names.

Women have left notes begging me to get the petition into the right hands… the hands of people who can help endo patients! I am doing my best to do so but I NEED HELP FROM AS MANY PEOPLE AS POSSIBLE!!

The more people speak up (in support groups, in the community, to their doctors, to their families/friends, to the public, on local news channels (I have done this), on blogs, on comment boards, on this petition… the better result we will get at increasing awareness and education about endo!

LET’S SPEAK UP AND BE HEARD! LET’S GET THE WORD OUT TO THOSE WHO NEED IT! LET’S GET THE PUBLIC TO UNDERSTAND THE SUFFERING THIS ILLNESS CAUSES AND THE RESILIENCE AND DETERMINATION OF SO VERY MANY ENDOMETRIOSIS PATIENTS!

If we work together as a team of endo patients, we will make things better for each other, ourselves and future generations. THINGS DON’T HAVE TO STAY THIS WAY! WE CAN MAKE IT BETTER!!

Thank you for your comments. Tracylynn. You got me fired up (in a good way) on a morning where I desperately wanted to crawl back in bed!!! Instead, I’m sharing your comments and adding to them in the hope that it will help the endo cause!!

LET’S SPEAK UP AND BE HEARD!!

Jeanne

3 MLO { 12.03.08 at 1:05 am }

There is one other way that endometriosis can be diagnosed – even when laparascopy does not diagnose it. It is at egg retrieval in an IVF cycle. Because the endo is deep inside the ovary, only when eggs are supposed to be recruited endometriomas occur instead. I only know this because this is the form of endometriosis I suffer from.

A laparascopy did not discover the endo. It was only discovered at egg retrieval.

4 Jeanne { 12.03.08 at 8:47 am }

MLO,

Before I start, I just want to remind readers to consult the disclaimer at the top of my homepage… I am not a medical professional.

Wow! You have really gotten my wheels turning! Thank you for that!

OK. I just had to get that disclaimer statement up there because you have brought up a point that seems to potentially put the EA’s wording (“laparoscopy”) in question. Also, the ERC uses the term “surgery”… and this may be inconsistent with what you are saying too. (That part has to do with the definition of “surgery” which we’ll get to in a minute).

But we’ll go back to EA and ERC in a minute…

First, thank you for your comment! I have never heard of endo being diagnosed this way… but it makes sense that endometrial tissue could be found this way… based on what I just read after you posted your comment.

You see your comment really got me curious… So I just went wading through a bunch of sites after searching on “egg retrieval” because I wanted to educate myself about how exactly the eggs are retrieved. I have never encountered anyone diagnosed the way you were and the EA and ERC statements don’t mention egg retrieval as a means of diagnosing endo. So my curious brain wanted to know more.

The thing is that the sites I looked at explained the egg retrieval process and what you said is really intriguing… but we’ll get back to that in a minute.

First, for those who are not familiar with egg retrieval, I looked a several sites and they all explained the process in a very similar way.

One site said simply: “Follicular aspiration involves inserting a hollow needle through the top of the vagina and into the ovaries. This needle is then used to suction out any follicles that may be present in the ovaries”.

Then, I randomly picked a site to link to here (and to quote from) so that readers here who are not familiar with how eggs are retrieved can get a basic understanding. As I said, I just picked this site at random — because it seemed to capture the spirit of what the other sites I looked at said as well. (I am not endorsing any particular clinic or doctor. I literally picked this site randomly because what it says is aligned with all of the other sites I looked at).

Here is the link (followed by a quote from it): http://www.ivfconnections.com/qretrieval.htm

“During the retrieval process the eggs are suctioned from the follicles using an aspiration needle.

What will the retrieval process be like?

The retrieval process varies slightly from clinic to clinic. Retrieval of the eggs from the follicles is usually done using a vaginal ultrasound probe, which guides the aspiration needle to each follicle. Most clinics use a light sedative and a local anesthetic during the ultrasound retrieval process, while others may opt to put you under a general anesthetic. Less frequently, laparoscopy, which requires a general anesthetic, is used to retrieve eggs from ovaries that are hard to reach.”

So (MLO, correct me if I’m getting this wrong, please!), it sounds like the follicular aspiration is done by inserting the aspiration needle/probe vaginally (and that this is done with guidance by ultrasound to pinpoint the correct location)? Is that right? Then the egg retrieval is done by essentially sucking it with the vaginal ultrasound probe/needle? Is that correct?

Wow! It’s interesting because when I look back at the wording of the Endometriosis Association and Endometriosis Research Center statements, the ERC statement uses the word “surgery” and the EA statement uses the word “laparoscopy”.

I don’t know if egg retrieval is considered “surgery”. It sounds from the sites I saw like it’s a “procedure” unless they have to do it laparoscopically (which sounds relatively uncommon). This isn’t just a matter of semantics. I’m really trying to wrap my brain around the whole “surgery vs. procedure” terminology because I may well be contacting EA and ERC to ask them about this issue and I want to get my facts straight.

Okay. So the EA statement that specifies “laparoscopy” is not consistent with what you experienced because your egg retrieval was not done laparoscopically. Is that correct?

Now on to the ERC statement. They used the term “surgery”. So if egg retrieval is considered “surgery”, then their statement would be technically correct (even if a bit lacking by not mentioning the egg retrieval scenario).

Hmm… Either way it sounds like EA’s statement might need some tweaking. ERC’s may too. I’m not sure.

Since endometriosis is defined as endometrial tissue being found anywhere other than the uterine lining, it is logical to me (a layperson) that any method that allows a doctor to physically access such misplaced tissue could diagnose endo. When doctors and endometriosis organizations make statements about MRIs and ultrasounds not being a definitive way of diagnosing endo, I’m assuming they are referring to abdominal ultrasounds (far different from the ultrasound used for the purpose of guiding the probe/needle for egg retrieval). For example, I have met patients with misguided doctors that tried to diagnose them with endo based on abdominal ultrasounds. So I think the EA and ERC intended to debunk the use of abdominal ultrasounds to diagnose endo. (After all, what if an abdominal ultrasound showed a mass assumed to be endo and it turned out it was really cancer, for example). So I think I understand their intention. I’m just not sure they have covered ALL of the bases.

In your case, the ultrasound was used simply as a means of guiding the needle to the right spot to retrieve the eggs, right?

My understanding of the definition of endo is any misplaced endometrial tissue… meaning ANY endometrial tissue that is not where it should be (the lining of the uterus only). So any finding of such tissue outside the uterine lining (so long as the tissue can be analyzed and determined to be endometrial tissue) would seem logical for diagnosing endo to me. (READERS: Again, I’m not a doctor. I’m just comparing what MLO went through with what EA and ERC website statements say… and I’m wondering if one or both statements need some slight tweaking). We’ll get to ERC in a minute.

Before we proceed any further I’m going to list the EA and ERC statements regarding how to diagnose endo (right or wrong) and then keep analyzing what each organization has said…

So for those who are not familiar with the EA and ERC statements regarding diagnosing endo, let me review them briefly here:

EA:
The Endometriosis Association (EA) website says “diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices”.

Based on what happened to you, it sounds like I may have taken EA’s definition too literally *OR* that they need to update/tweak their wording??

What you’re saying sounds logical to me since the doctor would (presumably) be able to analyze the tissue deep inside the ovary at the time of egg retrieval. (I’m not a doctor and I know zero about egg retrievals or endo inside the ovary but I’m assuming that the doctor somehow discovered the endometrial tissue within the ovary during the IVF based on how you have described it… allowing for the analysis of the tissue… analysis that is much the same way as would be done during laparoscopy)? Does that sound consistent with what you were told when you were diagnosed?

OK. Back to analyzing the EA’s wording. They say “laparoscopy is the ‘definitive’ means of diagnosing endo”. OK. Here is my dictionar
y’s definition of “definitive”: (1) precisely defined or explicit (2) being a final settlement; conclusive. While I understand that EA is probably trying to discount things like MRI or abdominal ultrasounds as a means for diagnosing endo, I guess I don’t understand why they use the term “laparoscopy” when someone like you was diagnosed via egg retrieval and not laparoscopically? (Obviously there is a big difference between you being diagnosed as having endometrial tissue inside of your ovary and Lacey Schwimmer going in for one doctor’s appointment, as per her People magazine article quote, and getting diagnosed by an office exam only)!!

Just out of curiosity, did the doctor who diagnosed you tell you that this is a very rare way to be diagnosed? I’m just wondering…

OK. So the (ERC) Endometriosis Research Center’s wording doesn’t specify laparoscopy… It says “surgery”. Specifically, the ERC says: “endometriosis can ONLY be diagnosed via surgery; diagnostic tests like MRIs and ultrasounds are not definitive”.

Hmm. So is egg retrieval considered “surgery”?? If not, it would seem that ERC might need to tweak its wording too.

Is egg retrieval considered a “procedure” rather than “surgery”? I know it may sound like I’m splitting hairs here but I’m trying to determine whether the ERC statement is or isn’t technically correct.

Frankly I’m inclined to contact both EA and ERC to question them about their wordings on diagnosing endo.

While I believe the point EA and ERC were trying to make is that scans done outside of the body only (i.e. MRI, ultrasound) can’t diagnose endo… I am just wondering if they accidentally left out the possibility of what you are describing… diagnosis based on endometrial tissue that’s INSIDE of the ovary.

It just never occurred to me that endo could be diagnosed by egg retrieval because I never would have been able to wrap my brain around the idea of follicular aspiration to diagnose endo since I have never had an egg retrieval done and neither EA nor ERC mentions egg retrieval as a means for locating misplaced endometrial tissue.

I really appreciate you commenting on this!!! Thanks to you it looks like I have some homework to do with EA and ERC (i.e. contacting them to see if they stand by their definitions as is).

Whew! Your comment kept me busy… Your comments really got me thinking!

Thanks for stopping by. I appreciate the info.

Jeanne 🙂

5 JenNo Gravatar { 12.30.11 at 9:06 am }

I’ve just been watching a bit of DWTS on youtube, and saw the episode where Julianne went for surgery. I, like I’m sure many others did, googled “Julianne Hough Endometriosis” and stumbled across your blog here (among many other articles from gossip sites).

I probably fall into the category of people you’re worried about in terms of receiving misinformation. I’m a 20 year old female with zero knowledge of endo up until about 20 minutes ago.

Firstly, I don’t think there’s any way of knowing what went into the diagnosis of either of the girls. I did not find it at all confusing about Julianne’s appendix. It seemed quite clear. In rare cases, the appendix needs removing. It’s completely irrelevant to the public how she came to find out her appendix needed removing, the point is that it did. No one is going to give it any more thought.

I’m not sure about older people, but as a young person, one of the first things we’ll do when faced with something we’re unsure of, such as endometriosis for me, especially when it concerns a celebrity we know of, is wikipedia-ing it. After a brief read of the wikipedia page for endometriosis, it was easy enough to fill in the blanks left by the media.

Also, regarding Lacey’s comments about the medication, perhaps all she meant was that she was diagnosed, did not require surgery, but had been given medication which will be treating it. Maybe she didn’t say, or even imply, that 24 hours of medication had solved all her problems. I assumed she just meant that medication had been prescribed, and she assumed that would help treat her pain, as that’s likely what her doctor said.

Whilst I understand and completely respect that this is something your passionate about, and it is difficult seeing any type of miss-information, as I have my own things I’m passionate about, I really think you’re over-thinking this. The large majority of people would have either assumed Julianne had appendicitis, or if they read further, then endo, but they would not have given it more than 60 seconds of thought before they clicked on a link about Kim Kardashian’s love life.

Those of us that looked a little further, did not need to look very far to figure out accurate information. Most people are not stupid, and they know that gossip sites don’t always have the facts straight. No one with at least half a brain is going to base their medical thoughts solely on Perez Hilton. They’ll wikipedia it and then go to the doctors, who will (hopefully) be a good doctor.

Anyway, I just think it’s nothing to stress about. The main point of all this should be that these two very healthy young women have brought a little extra attention to endo, and anyone who is interested can easily find out more. For most of us, we’ll loose interest in it, and never have endo ourselves, so it’s irrelevant as to whether we understand it or not.

6 JeanneNo Gravatar { 12.31.11 at 2:20 am }

Jen,

Regarding endometriosis misinformation, I’m worried about anything that is likely to confuse or mislead people about the illness. People of any age can be misinformed when a message is unclear in some way. What is clear to one person may be unclear to another. Each person has his or her own unique background knowledge and experiences. I believe we all see and hear things through our own unique “filters”.

You indicated that you had zero knowledge about endometriosis up until about 20 minutes before you posted your comment. With all due respect, let me tell you a little bit about my perspective on this illness.

I have lived with endometriosis for almost 30 years now. Having firsthand experience with the illness affects my perspective. Having attended monthly in-person support group meetings from 1992-2008 affects my perspective. Interacting with endometriosis patients online regularly since 2008 affects my perspective. Discussing endometriosis with my specialists affects my perspective. Reading medical journals about endometriosis research affects my perspective.

Am I passionate about endometriosis? Absolutely. Am I “over-thinking” this issue? No, I don’t think so. Not at all. There was enormous confusion for many people when these endometriosis announcements came out in the mass media. The clip you referenced from YouTube was just a tiny part of the picture. These two women were interviewed extensively in the mass media about endometriosis. Sadly, many of the articles caused confusion.

You are correct that there is no way of knowing what went into the diagnosis of either of the women. Only they and their doctors know that. I understand that you did not find the way Julianne Hough’s appendix was referenced to be confusing.

Please understand that there were plenty of women who did. I know because they contacted me (and other bloggers I know who write about endometriosis) in the days following the media blitz (about these two women’s medical status). While you may not have given it any more thought, others did.

What may seem irrelevant to you (a person who just learned of endometriosis a few minutes ago) is not irrelevant to many endometriosis patients… who have witnessed the media completely ignore endometriosis altogether until recent years. To finally have a neglected illness get media coverage and have it be murky, confusing, and sometimes outright wrong (as has happened in the past couple of years in a variety of situations) is troubling to many endometriosis patients. Nearly 1,000 people have signed a petition (linked on my blog) pushing for factual coverage in the media. I initially started this petition in the wake of the Dancing With The Stars media blitz (and the confusion that followed it for many people).

I try not to cluster people by age groups if I can help it. I can’t speak for my age group. I don’t think anyone else can speak for their age group either. So, I try not to separate things into “older people” and “younger people” if I can help it. I think I understand the point you were trying to make (i.e. that younger people are more inclined to search for medical information online than older people). I’m guessing that you probably view me as an “older person” – given that I’m 43 years old. I use the Internet extensively and there is an amazing amount of high-quality information available online. There is also misinformation available online. It isn’t always easy to ascertain which is which. Obviously, gossip sites aren’t a good source for medical information. However, some other sites may not be so easy to categorize as having high quality info or not-so-high-quality info. It’s not black and white and it’s sometimes difficult to tell the good from the bad.

You mentioned the Wikipedia page on endometriosis. Without combing through the entire page, I can say that I myself take issue with Lacey Schwimmer being listed (under “notable cases”). Endometriosis can only be diagnosed via laparoscopy. Maybe she’s had one and maybe she hasn’t (that’s between her and her doctor) but the many press reports I have read all are worded as if she has not had a laparoscopy. Therefore, I believe it is misleading to include her name on that list. I have seen her name on other such lists in the past and it was later removed for this reason.

It is her business whether she wants to discuss her medical status publicly. I believe that once a public figure does speak out about having a given illness, though, there is a responsibility attached to that. (I believe using a public platform to speak out about a given illness brings with it a responsibility to promote facts about the illness). In her case, if the many interviews she has granted have resulted in mainstream links such as Wikipedia having listed her as an endometriosis patient, I believe it is relevant to note whether she has or has not had a laparoscopy… since that is the definitive means of diagnosing it.

Is this splitting hairs or getting worked up over “nothing”? No. This (proper, timely diagnosis) could actually be a life and death matter for some. A fellow endometriosis patient who writes a blog about endo wrote a post about her sister… My friend (the blogger I just mentioned) has endometriosis. So does her mother. When her sister developed classic endo symptoms, she went to her doctor requesting medication to treat endo (based on her family history and her own symptoms). Her doctor said that he would not randomly prescribe medication to treat endometriosis (that had not been diagnosed) and told her that they needed to verify what was causing her symptoms. As it turns out, my friend’s sister had cervical cancer… not endometriosis. Had her doctor simply given her drugs to treat endometriosis (which she doesn’t even have), her cancer would have continued to grow.

This is just one example of a case where family history and symptoms were not sufficient to diagnose endometriosis. It also illustrates the importance of getting an accurate diagnosis (by laparoscopic surgery).

I am not in Lacey’s head and have no idea what motivated her to say what she did. I haven’t written about this topic in awhile since these posts were written back in 2008 when the media blitz was happening. I would not be at all surprised if, as you indicated, she was simply repeating things she had heard from her doctor. Whether the message got lost in translation or whether the doctor gave her information that is not in sync with the medical community, I don’t know. Obviously I was not privy to her conversation with her doctor and I have no idea what she was told. I only know what made it into the media… and that was not helpful information, in my opinion.

You said:

“Also, regarding Lacey’s comments about the medication, perhaps all she meant was that she was diagnosed, did not require surgery, but had been given medication which will be treating it”.

As I mentioned previously, laparoscopy is the definitive method for diagnosing endo. So, that’s the whole point right there. If she indicated that she did not require surgery (which she did in many interviews) and she indicated she has endo (also indicated in many interviews), then the implication is that she was somehow diagnosed without having had a laparoscopy. This is impossible.

As far as treating someone for endometriosis without verifying that it is, in fact, the correct diagnosis… it can be dangerous. (Such as in cases like my friend’s sister who had cervical cancer but thought she had endo).

You indicated that you think I am “over-thinking” this. You are entitled to your opinion. I respectfully disagree with your conclusion. I have spent many hours reviewing interviews in the media by various public figures (about endo). I have also spoken with a large number of fellow endometriosis patients who wholeheartedly agree with me that there are valid concerns about how these “endometriosis announcements” were handled in the media. So, I know of many people who shared my concerns when these stories broke.

At the same time, I can’t speak for anyone besides myself. Honestly, I don’t think anyone can speak for the “large majority of people”. While there certainly may be people who didn’t give a moment’s thought to this, there were definitely others who did.

I am fully aware of the fact that there could be other reasons compelling an appendectomy (including in endo patients). I have firsthand experience on this since I had my appendix removed (due to cancer… not endo) – during a surgery that was primarily intended to remove endometriosis.

The way that things were worded on the show seemed to imply that the appendectomy was tied to her (yet-to-be-officially-diagnosed) endo. You may not have interpreted it the same way. Again, it is key to remember that endometriosis is diagnosed by laparoscopy. Since her announcement preceded that surgery, it was unclear how the appendectomy had been predicted.

Frankly, it’s not any of my business what is happening with her appendix. The trick is that if her remarks include her indicating that she has endometriosis and if there could be an implication, to some people, that the appendix issue was related to the (yet-to-be-diagnosed) endo, then her public statement to millions of people initiated the process of her wading into making public comments about an illness that affects millions. At this point, patients who have the illness (like me) and who understand the dangers of people assuming a woman has endo when she may, in fact, have another illness that mimics endo (such as cancer) became rightly concerned about the message potentially sent.

Some people do read further. Some don’t. Some seek additional information from reputable sources. Others seek information from more questionable ones. Some people have more experience than others at finding reliable sources of medical info. Some have access to medical journals (via university access or personal funds) and others don’t. I did not (and certainly never would) imply that anyone is “stupid” and my expression (via my blog post) of my perspective on the situation involving the “endometriosis announcements” by Ms. Hough and Ms. Schwimmer is just that… my perspective.

I don’t think anyone would disagree with the notion that gossip sites are poor sources of medical information. That does not mean that it is a good thing for a large number of publications (in the gossip category or not) to publish incorrect information. Just because gossip publications aren’t a reliable source of info doesn’t necessarily mean that misinformation presented in them is harmless. This is especially true in a culture where entertainment and news are meshed together all the time. Pop culture references do matter and there are people who take things at face value (even from what you or I might consider a questionable source).

While I am certainly more concerned about errors in mainstream newspapers than in gossip magazines, I am concerned about any and all endometriosis misinformation… anywhere.

Sadly, there are a great many doctors who are not well-versed in recognizing, removing, and treating endometriosis. This is one of many very unfortunate and frustrating aspects of living with endometriosis. Finding a great doctor to manage endometriosis can be quite a challenge.

This post was written in 2008. It is not something I stress about. I wrote the post about issues that were relevant at the time. They have resurfaced again and again with others (others besides Ms. Hough and Ms. Schwimmer). You commented that Ms. Hough and Ms. Schwimmer are “two very healthy young women”. I am a bit confused about that statement. If, in fact, one takes Lacey Schwimmer’s self-proclaimed diagnosis at face value (without knowing if she has actually had a laparoscopy to diagnose her with endo at all), then we are talking about two women who share a chronic illness. While they have both obviously been very physically active on the show, we simply don’t know how they do in their off-camera downtime. I don’t really think one can draw conclusions about whether someone is “very healthy” by watching them on TV. Endometriosis is an invisible illness. I think it’s dangerous to assume someone is “very healthy” simply because they look healthy. Perhaps you have other reasons for labeling them “very healthy” besides what you have seen on the show.

You are entitled to conclude whatever you like about what the “main point” should be. For me, the main point of my post was concern about accurate reporting on endometriosis in the “media” (even if that includes gossip magazines) and my wish that Ms. Hough’s surgery would go well.

The attention brought to endo by the media blitz surrounding these two women, unfortunately, caused great upset/confusion to many endo patients (who immediately recognized the endo misinformation being disseminated). What impact these interviews had on those who do not have a personal connection to endo is a little less clear to me since you are the first such person to contact me (on my blog or elsewhere) with a perspective.

Finding reliable sources about endometriosis can be tricky. When some endometriosis organizations have been known to promote false cures and when many doctors still spread myths about the illness, finding solid info on endometriosis can be a bit more challenging than you might think. For a patient seeking answers, relief, and support… a Wikipedia page just doesn’t scratch the surface.

I respectfully disagree with the notion that you can speak for “most” people. You indicate that most people will lose interest in it. Yet you yourself took a fair amount of time and energy leaving a comment here. So, apparently something held your interest long enough to do so. Obviously you are the only one who can speak for yourself and if you say you’ve lost interest, I’ll take you at your word. However, I don’t agree with the idea that you can speak for “most” people. I am certainly aware that there may be plenty of people who totally ignored this issue when it surfaced back in 2008. I never intended to speak for “most” people and never assumed what anyone did or didn’t think about the DWTS dancers’ announcements.

In the absence of hard evidence to support higher numbers, I tend to use the “89 million endometriosis patients worldwide” statistic. However, I have no doubt that the number is much higher. Many put the figure upwards of 100 million.

Why am I citing stats? Well, your comment about losing interest in the topic of endometriosis and your additional comment that you’ll “never have endo” (impossible to predict) yourself struck me. I honestly hope that you never get diagnosed with endometriosis. I wouldn’t wish it on my worst enemy. Seriously.

The reason I cite the stats is that the odds are that – even if you never have endo – you will very likely (at some point) have a co-worker or neighbor or friend (etc.) who has it. I can only hope that if you do ever learn that someone you care about has endometriosis that you’ll have just a smidgen of compassion for that person.

Wow. To state that it’s “irrelevant as to whether we understand it or not” is the ultimate insult to patients who live with this insidious, painful, expensive, difficult-to-treat disease… that can profoundly impact career choices, fertility, and/or ability to function at even the most basic level (in some debilitating cases). Some endometriosis patients have even completed suicide. (People reach my blog on a daily basis searching strings such as “endometriosis and suicide”).

I am sure you meant no offense when you made that remark about it being “irrelevant”. Please understand, though, that when you make such a statement to a patient with chronic illness(es), it is highly inflammatory.

Honestly, I did briefly entertain the notion of not publishing your comment at all. This was not because I found it offensive (which I did) but because I didn’t find it particularly productive. Your hurling criticism at me (i.e. accusing me of “over-thinking”) and concluding your remarks with a comment about it being “irrelevant” whether you understand it (the facts about endo) or not made your comment really stand out from all of the blog comments that have ever been submitted since I began writing a blog in 2008.

In the end, I decided to include your comments and try to use it as a teachable moment. To be clear, I do not wish to sound like I am condescending to you in any way whatsoever.

The fact is that I have lived with endo for almost 30 years. This is 10 years longer than you’ve been on the planet. So, I think it is possible that I may have something to say that is of value in this situation. You can choose to disregard or disagree with what I say here. That’s fair game. I just thought it would be worth be taking some time and energy today to address your comments.

My hope is that you may find yourself caring (even just a wee little bit) about endometriosis after you read this. My hope is that you’ll have a better understanding of the damage that can be done by endo misinformation in the media (any media). My hope is that you’ll gain a bit of understanding about endo so that, someday, if you meet someone who has endo or if a loved one of yours is diagnosed, you’ll (maybe) have a better capacity to show compassion for that individual. Having been chronically ill myself since I was 13 years old, I have a very difficult time with people who give me the impression that they take their health for granted. (To be clear, I make absolutely no assumptions about your health).

I must say that I was taken aback by your comment about it being “irrelevant” (regarding understanding an illness… whatever it may be). Whether you are aware of it or not, that comment comes across as a big: “I don’t care“. I would never, ever tell a person with xyz (name your illness) that my understanding of their illness was “irrelevant”.

My perception of what you said is that you don’t have endo and you, therefore, don’t really care about understanding it. While it may be patently true that you don’t care about endo, I think stating this to a patient who has the illness (on a blog that is about chronic illnesses like endometriosis) is rather insensitive. Perhaps that’s not what you intended with that comment but that is how it felt to me when I read it.

The information you gathered in a mere 20 minutes couldn’t be very extensive. Having lived with this illness for almost 3 decades (and still learning about it all the time), I must emphasize that endometriosis is a serious, complicated illness. Doctors and researchers spend their entire careers truing to better understand it.

Thank you for your feedback. I hope that you have a happy, healthy new year.

Jeanne

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