tag:blogger.com,1999:blog-314299443408924142.post7745355386499966257..comments2023-05-22T12:07:16.728-04:00Comments on 'Chronic Healing' located at: http://chronichealing.com/: Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!Jeannehttp://www.blogger.com/profile/11454649048120118507noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-314299443408924142.post-22524084068100729282008-11-21T14:01:00.000-05:002008-11-21T14:01:00.000-05:00Melissa,Wow! That is interesting. We obviously c...Melissa,<BR/><BR/>Wow! That is interesting. We obviously can't know for sure what went into her decision-making process for leaving the show but it does make you wonder... While it's hard to know what is going on with Julianne Hough based on TV shows and press releases, I definitely agree that IF endo is a factor in her leaving the show... it would be helpful if she could say that. We don't know for sure, of course, what went into her decision.<BR/><BR/>Here's what we do know, based on quotes from well over a dozen articles about Julianne and her endo:<BR/><BR/>* She was diagnosed with endo <B><I>BEFORE</I></B> her laparoscopy. This flies in the face of what the endometriosis "experts" say. (Lap is the means for diagnosis of endo).<BR/><BR/>* Her managers wanted her to keep her endometriosis under wraps (per Julianne).<BR/><BR/>* Julianne went public with her endo diagnosis anyway. She was quoted as saying she did this because she wanted to "be honest".<BR/><BR/>* Julianne repeatedly said in interviews that she wants to be a "role model" for endo patients.<BR/><BR/>* Since the diagnoses of Julianne Hough and Lacey Schwimmer, there has much confusion and misinformation in the press on endo. (Lacey didn’t even have a laparoscopy at all)!<BR/><BR/>While Julianne's medical condition <I>is</I> her business, I believe her comments have opened the door for feedback... <I>especially</I> from endo patients. The fact is that her comments have caused quite a stir for the endo patients I know.<BR/><BR/>The media should be fact-checking! The most basic checking would tell them a lap is how diagnosis occurs. <BR/><BR/>Also, obviously her doctor's statements to the press are confusing and in contrast to what Endometriosis Research Center and Endometriosis Association say…<BR/><BR/>So I think she, at just 20 years old, is quite likely simply repeating her doctor's words.<BR/><BR/>The issue I'm concerned with is that celebrities with millions of viewers have a responsibility, in a case like this, to get an understanding of the basics <I>before</I> making announcements on TV that send mixed signals and cause confusion.<BR/><BR/>While Julianne Hough may not be an "official spokesperson" for endo, I do believe that by using terms like "role model" she set up an expectation with some of her fans that she was going to basically be a leader for the cause, so to speak.<BR/><BR/>I absolutely agree with you that People magazine's reference to the appendectomy <I>only</I> (without mentioning endometriosis) was yet another misleading statement. If endometriosis was the reason the appendix was removed, then endo should have been mentioned. (What is interesting here is that Julianne announced <I>before</I> surgery that she has endo and that her appendix was going to be removed so that cysts will not form on it (this is a paraphrase). I have never heard of taking the appendix out to <I>prevent</I> cysts from forming on it??? I have been in support groups for endo since 1992 and have never heard of such a thing. (Bear in mind that she was talking about this the day <I>BEFORE</I> the surgery). It’s not clear to me how her doctor could predict the need to take her appendix out <I>before</I> the surgery. <BR/><BR/>* It is unfortunate that it is such a challenge for the media to print/show a high quality, fact-checked story.<BR/>* I think the doctor's incorrect comments and the media's handling of this matter are problematic.<BR/>* I also wish Julianne Hough could have gotten some basic facts before being quoted so heavily in the press (making statements that left many scratching their heads).<BR/><BR/>One can only hope that somehow, if enough people band together, we can find a way to get high quality, accurate coverage of endo in the mass media.<BR/><BR/>On that note, I'm including this link for anyone who hasn't seen it:<BR/><BR/>http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html<BR/><BR/>We are up to 194 signatures. This petition is to "Create Awareness & Understanding of Endometriosis". We are hoping to get a mass media outlet to cover endo responsibly. We need to get the FACTS about endo disseminated to the public!<BR/><BR/>Thank you for the update, Melissa. There seems to be something in the news every single day about Julianne Hough. She could be such a positive force and advocate for fellow endo patients. I think her intentions are good but, unfortunately, there are mixed messages getting spread throughout the media.<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-58972580916763116222008-11-21T10:17:00.000-05:002008-11-21T10:17:00.000-05:00And for the latest rant on this subject...Last nig...And for the latest rant on this subject...<BR/><BR/>Last night on Entertainment Tonight, it was announced that Julianne will NOT be returning next season. The reasons provided were due to her newly established singing career, however, one cannot but wonder if the real reason might have been related to her health status. <BR/><BR/>If Julianne were leaving due to the physical limitations involved with having this disease, using her music as an excuse does a further dis-service towards us all. To me, to be a spokesperson means having honest conversations about the topic at hand. Afterall, of what use is a spokesperson who doesn't do everything in their power to draw attention to the situation of millions of others? <BR/><BR/>So, in looking at People Magazine online today (can you tell I'm procrastinating?), they briefly mentioned how Julianne had recent "appendectomy surgery". Why, oh why, can't they say "underwent recent surgery to diagnose and treat endometriosis" which is more of a truthful statement? Sure, she DID have her appendix removed, but the cause of the situation wasn't infection but a real disease! <BR/><BR/>Melissa RalstonUnknownhttps://www.blogger.com/profile/10491843435252083702noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-4310513593706697492008-11-21T00:37:00.000-05:002008-11-21T00:37:00.000-05:00Oh Melissa!Wow!! Where do I start??First, thank yo...Oh Melissa!<BR/><BR/>Wow!! Where do I start??<BR/><BR/>First, thank you for your informative, accurate assessment of this situation in the media after the Dancing with the Stars dancers (Julianne Hough and Lacey Schwimmer) were diagnosed with endo.<BR/><BR/>I have blogging about this <I>extensively</I> in the last couple of weeks. (Some might say obsessively)... because I have read equally disturbing interview comments that mislead the public into thinking a laparoscopy is <I>NOT</I> needed for a definitive diagnosis of endo... This is downright outrageous!!!<BR/><BR/>How come doctors aren't standing up to challenge this dangerous myth??? How come endo organizations aren't fighting tooth and nail to get the <B><I>FACTS</I></B> about endo out to the general public <B><I>WHILE</I></B> this stuff is still in the press so much??<BR/><BR/>This is a <B><I>GOLDEN OPPORTUNITY</I></B> to get the <B><I>FACTS</I></B> out to the general public, to endo patients, and to the many doctors who don't "get" this illness!<BR/><BR/>Someday when I think my blood pressure can handle it, I'll have to pick up the People magazine from the library. Right now, I think it would boil my blood too much.<BR/><BR/>From this Guest Blog post from Endochick right here, you can see a "related link" at the bottom of the post. <BR/><BR/>From that related link, you can see <B><I>NUMEROUS</I></B> blog posts I have written about the dancers from DWTS and the impact of the media's misinformation.<BR/><BR/>Any media outlet that did 5 minutes or less of fact checking would know that endo diagnosis is done by a lap!! <BR/><BR/>I have read countless magazine articles, online press releases, statements on Julianne Hough's website, etc. The more I read, the more concerned I get that the public is receiving the wrong message!<BR/><BR/>Two weeks after surgery, Julianne and Derek Hough performed a dance where he got up on her shoulders and she carried him across the dance floor. She also bent her body backwards in what looked very painful to any endo patient I know who is post-op!<BR/><BR/>I hope Julianne has not done permanent damage to her body by returning to the show so soon. <BR/><BR/>All the dancers/stars talk each week about how grueling, demanding, and physical the training and dancing is. <BR/><BR/>Ex-Olympians tell of how DWTS training is <B><I>TOUGHER</I></B> than training for the Olympics!!<BR/><BR/>So what message does the public get when Julianne return sto such vigorous dancing 2 weeks post-op???<BR/><BR/><B><I>Endo patients face disbelief/misunderstanding of endo from their own doctors, friends, family members, employers, etc. The <B><I>LAST</I></B></I> thing endo patients need is one more reason for people to unfairly perceive them as "faking", "lazy", or "exaggerating"!!!</B><BR/><BR/>Not everyone can bounce back from a lap like a 20 year old athlete/dancer can. What expectations are set by this??<BR/><BR/>I have the utmost respect for Julianne and Lacey going public about their diagnoses. (Apparently, Julianne's managers tried to talk her out of talking about her endo but she said she "wanted to be honest" and that she "wanted to be a "role model"). Kudos to her for speaking out rather than hiding her illness!<BR/><BR/>With all due respect, if she is interested in being a role model for endo patients, she needs to be spreading <B><I>FACTS</I></B> rather than misinformation! <BR/><BR/>I fault her doctor (who from the People article you saw sounds "out-of-the-loop", to put it nicely). <BR/><BR/>I fault the media for not fact-checking endo at all and just quoting these women. <BR/><BR/>These 2 dancers are young. When I was diagnosed at 23, I had never heard of endo. I don't expect the dancers to become experts overnight! <BR/><BR/><B>HOWEVER</B>, if a celebrity in the public eye has many MILLIONS of DWTS viewers plus loads of followers of Julianne's blossoming country music career, it would be prudent to learn the <B><I>BASICS</I></B> of endo <B><I>BEFORE</I></B> doing rounds and rounds of interviews reaching millions with the misinformation!!<BR/><BR/>Rumor has it that Julianne's mom and sister have endo. One has to wonder how it is that Julianne accepted an endo diagnosis with out lap first. Her lap apparently happened shortly <B>AFTER</B> her endo diagnosis. Huh?/? <BR/><BR/>Also, Lacey Schwimmer <B><I>STILL</I></B> hasn't had a lap because she says it's not necessary since they "caught it early". Huh??? <BR/><BR/>These comments are a disservice to the estimated 89 million women with endo worldwide. Also, the general public (many of whom never heard of endo until a couple of weeks ago) now have heard the misinformation. :(<BR/><BR/>I hate to say it but this media frenzy about the DWTS women's endo (or suspected endo for Lacey) may be doing more harm than good!<BR/><BR/>Anyone wishing to take a peek at the endo petition, here it is:<BR/><BR/>http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html<BR/><BR/>+++++++++<BR/><B><I>ANYONE can sign!!!</I></B> <BR/>+++++++++ <BR/><BR/>In addition to patients, we’ve had signatures from moms, dads, grandparents, sisters, spouses, etc!! <BR/><BR/>Many, many countries are represented on this petition. If you pull it up, it shows you comments made by those who added comments when they signed it. The whole signing process (even with posting a comment too) takes about 2 minutes... literally!<BR/><BR/><B>PLEASE</B> spread the word about this petition to anyone who will listen! The more signatures we get the better our odds of getting <B>ACCURATE</B> media coverage of endo to the masses! <BR/><BR/>We <B>MUST</B> counteract the misinformation coming out of Hollywood right now. <BR/><BR/>It truly is a disservice to endo patients and their loved ones. <BR/><BR/>Can anyone reading this imagine dancing like that (for those you saw it) only 2 weeks post-op??? <BR/><BR/>I have been in endo support groups since 1992. I have never heard of anyone taking on physical activity like that 2 weeks post-op. I just hope she didn’t hurt herself!!!!<BR/><BR/>As far as your letter to the editor of People magazine... I could NOT have written it better myself!! It is amazing, fact-filled, contains great supporting details, etc. <BR/><BR/>I hope they print your letter!!!!!!!! <BR/><BR/>It is awesome!!!!!!!!!!!!!!!!!!!<BR/><BR/>I’m so proud of you for taking the time to write that masterpiece to People!! I honestly hope they print it!!!!!!!!!<BR/><BR/>That’s all we need is this “specialist” being interviewed stating the same misinformation the 2 dancers have said previously. It truly is a crying shame. <BR/><BR/>I believe this post by Endochick re: her sister’s cervical cancer is a <B><I>PERFECT</I></B> example of the trouble with self-diagnosis AND of assuming that symptoms plus family history proves it’s endo!! <BR/><BR/>Obviously Endochick’s sister’s cervical cancer was not going to be properly treated if the doc had assumed it was endo and had not done the pap smear. <BR/><BR/>In fact, my (non-medical) guess is that the hormones doc might have used to “treat” her “suspected endo” might have <B><I>WORSENED</I></B> the cervical cancer. <BR/><BR/>That’s just a guess but I know a woman who had cervical dysplasia (level 3) and was pregnant. So they had to wait until the birth to treat it. Well, her pregnancy hormones made it get worse much faster... So by the birth she was at a level 5 for cervical dysplasia!!<BR/><BR/>Not getting a proper diagnosis can literally put lives in jeopardy. This type of thing is why I have written somewhat obsessively in the past 2 weeks about this controversy.<BR/><BR/>Your comment was awesome and your letter to People was outstanding. If we all band together and work as a team, I am determined we can get some big TV show to do at least a segment on endo. <BR/><BR/>If Oprah and The View choose not to, we can start campaigning shows like The Today Show. I am on a mission! The more signatures we get the better!!!<BR/><BR/>So <B><I>PLEASE</I></B> get the word out to your “Goddesses with Endometriosis Support Group” with so very many members! <BR/><BR/>If we could harness the power of that many signatures plus their families and friends, that petition could grow by leaps & bounds!<BR/><BR/>Again, please check the petition link above if interested in checking it out!<BR/><BR/><B><I>Let’s get THOUSANDS of signatures rather than HUNDREDS! <BR/><BR/>We can do it!!</I></B><BR/><BR/>:)<BR/><BR/>Here is my contact info (aside from this blog and the petition itself)...<BR/><BR/>Jeanne :)<BR/>------------<BR/>Jeanne<BR/>Email: endendo@frontiernet.net<BR/>Twitter page: twitter.com/jeanneendo<BR/>Look for me on Facebook as "Jeanne Endo" in the "Together We Can Cure Endometriosis" groupJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-59550852801409593592008-11-20T22:09:00.000-05:002008-11-20T22:09:00.000-05:00I'm not sure if any of you have read the recent ar...I'm not sure if any of you have read the recent article in People magazine concerning these ladies diagnoses with endo. They had a comment box from the "specialist" involved which essentially did a huge dis-service to us all who suffer from this disease. Here is a copy of what I sent to the editor of People in response:<BR/><BR/><BR/>Dear Editor,<BR/><BR/>I am writing in regards to the article written in the November 17, 2008 edition of People Magazine, regarding Julianne Hough’s surgery to treat endometriosis. In your article, Dr. Randy Harris states that surgery may not be necessary for treating this disease and that it can often be managed by anti-inflammatory medications and low-dose birth control pills. He further states that today women with even a bad case of endometriosis can get pregnant. I find these statements to be disappointing at best, as someone who has lived with this disease for 18 years and has kept informed on the latest research concerning the disease. I was treated for “period pain” since I was 13 with the use of birth control pills. It wasn’t until my kidney stopped functioning, due to the endometriosis strangulating the kidney, that my concerns were taken seriously and it was discovered that I had a relatively severe case of the disease. While I have gotten pregnant, I have only had one live birth, the others ending in miscarriages due to the endometriosis. For the past 7 years I have run an internet support group with close to 1,000 members to educate and support others living with this disease. Most of the women who have been through the support group have also tried many different therapies, including the anti-inflammatory and low-dose birth control pills that Dr. Harris speaks of. The Endometriosis Association, The Endometriosis Research Center, The Endometriosis Treatment Center of Atlanta, and most of the leading “experts” on this disease, clearly state that the only way for a firm diagnosis of endometriosis is to have a laparoscopic surgery done. I feel that this article has done a dis-service to many others out there with this disease who might believe that they do not need a diagnosis prior to starting treatment, and did not even touch the point that for a lot of women, this procedure will be the only way that they experience relief from the disease. <BR/><BR/>Sincerely,<BR/>Melissa Ralston, RSW<BR/>Leader of Goddesses with Endometriosis Support Group<BR/>melissagetsmail@gmail.comUnknownhttps://www.blogger.com/profile/10491843435252083702noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-19874547285350397922008-11-18T23:04:00.000-05:002008-11-18T23:04:00.000-05:00Kelly D,Thank you for stopping by here! I was so ...Kelly D,<BR/><BR/>Thank you for stopping by here! <BR/><BR/><B><I>I was so impressed with Endochick's post (printed on her blog initially) that I asked her if I could reprint it here.</I></B> <BR/><BR/>I am very grateful she gave me permission to re-post it here. <BR/><BR/>You are absolutely correct about endometriosis being poorly understood.<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-13648997997822139002008-11-18T16:10:00.000-05:002008-11-18T16:10:00.000-05:00Great information about endometriosis. It is truly...Great information about endometriosis. It is truly a disease that isn't well understood.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-25616770359477899192008-11-17T21:15:00.000-05:002008-11-17T21:15:00.000-05:00Maggie May,Thank you so much for your positive com...Maggie May,<BR/><BR/>Thank you so much for your positive comments!! <BR/><BR/>I think Endochick's Guest Blog post here really "hit home" some of the <I>numerous reasons</I> that it truly matters to get a definitive diagnosis!<BR/><BR/>If your haven't already done so, I encourage you you check out Endochick's blog. (Just see links to her blog in this same post and/or you can find her listed in the blogroll in my sidebar.<BR/><BR/>I greatly appreciate your feedback. I took a look at your blog today for the first time and it was really interesting! I added you to my blogroll today and hope you'll be back to visit. :)<BR/><BR/>Take care! <BR/><BR/>Jeanne :)Jeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-33150313150760181262008-11-17T20:58:00.000-05:002008-11-17T20:58:00.000-05:00i agree that pathology is important any time your ...i agree that pathology is important any time your doc. is removing tissues from your body they should be checked-<BR/><BR/>great information.Maggie Mayhttps://www.blogger.com/profile/14699674732274478502noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-83305313153438256452008-11-16T19:21:00.000-05:002008-11-16T19:21:00.000-05:00Thanks Alicia!JeanneThanks Alicia!<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-227022172948610632008-11-16T18:10:00.000-05:002008-11-16T18:10:00.000-05:00Thank you for sharing your story. And thank you fo...Thank you for sharing your story. And thank you for pointing out why a lap is the only way to confirm the diagnosis of endo.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-66165205970828021862008-11-16T14:31:00.000-05:002008-11-16T14:31:00.000-05:00Jannie,It's amazing how many conditions can presen...Jannie,<BR/><BR/>It's amazing how many conditions can present with similar symptoms...<BR/><BR/>I hope you're doing well today too. Sometimes I'm amazed at how quickly the weekend flies by. :)<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-42128195802147416732008-11-16T12:34:00.000-05:002008-11-16T12:34:00.000-05:00Amen to that last sentence in your comment, Jeanne...Amen to that last sentence in your comment, Jeanne!<BR/><BR/>And yes, it was a really impressive list, opened these eyes even further to all kinds of health conditions women can have.<BR/><BR/>Thinking of you and hope you are well today.Jannie Funsterhttps://www.blogger.com/profile/11595786402510366043noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-31666804930859553272008-11-15T21:55:00.000-05:002008-11-15T21:55:00.000-05:00Jannie,Endochick's story really touched me. What ...Jannie,<BR/><BR/>Endochick's story really touched me. <BR/><BR/>What happened to her sister must have been so scary... Having had cancer myself (not cervical), it really moved me to read what her sister went through. <BR/><BR/>I thought that this real-life example really captured the importance of getting a proper diagnosis in order to obtain proper treatment.<BR/><BR/>The list Endochick compiled of conditions that have symptoms that can sometimes be mistaken for endometriosis was impressive, wasn't it? I thought that was quite a list!<BR/><BR/>Yes, getting diagnosed properly is so important for being able to obtain appropriate treatment. <BR/><BR/>Self-diagnosis of endometriosis is just not possible. Family history and symptoms can throw one off track, as happened to Endochick's sister. <BR/><BR/>Thank goodness she saw the doctor in time to find out the real reason behind her problems.<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.comtag:blogger.com,1999:blog-314299443408924142.post-90364871549350393752008-11-15T20:52:00.000-05:002008-11-15T20:52:00.000-05:00Thank you for this guest post.Very well stated.I j...Thank you for this guest post.<BR/><BR/>Very well stated.<BR/><BR/>I just left a comment on Endochick's blog and will reiterate here I'm so glad she listed many other conditions that may mimic the symptoms of endometriosis. <BR/><BR/>We do owe it to women everywhere to get correct diagnoses.<BR/><BR/>And hope woman gets the health care she deserves.<BR/><BR/>Thank you!!Jannie Funsterhttps://www.blogger.com/profile/11595786402510366043noreply@blogger.com