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10/30/2008

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 endometriosis 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 and 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.

4 comments:

TRACYLYNN said...

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.

Jeanne said...

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 than 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

MLO said...

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.

Jeanne said...

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 dictionary’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 :)

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