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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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Editor's Note/Update (11:43 EST on October 28, 2008):
I found another link that provides a bit more insight into Julianne Hough's situation: E! Online
Julianne Hough of Dancing With the Stars reported on last night's show that she has endometriosis and will be having an appendectomy today:
USA Today: 'Dancing' star Julianne Hough to have surgery
The announcement on her website follows:
Julianne Hough's website
Her site has comments from well-wishers, including a message from the Endometriosis Research Center.
Having had 7 abdominal surgeries myself, including an appendectomy, my best wishes are with Julianne for a speedy recovery. Hopefully she has a skilled surgeon who will be able to remove the endometrial implants and the appendix that is apparently affected.
One thing that puzzled me is that she said on the show last night that she "had been diagnosed with endometriosis" and that she would be having surgery today to remove her appendix. What I'm curious about is how the endometriosis diagnosis was made if she hasn't had surgery yet and how her doctor(s) can predict that the endo is on her appendix??
As endometriosis patients know, this condition is diagnosed by a surgery called laparoscopy. I have been watching the show this season and I don't know of her missing a week until now. So I am assuming she did not have a laparoscopy since this season of the show began. All of the dancers talk each week about how physically demanding the dancing is. I can't imagine how she could have had a laparoscopy recently and been dancing this season up until now. If she had been diagnosed with endo previous to this season and they knew it was on her appendix, I wonder why they wouldn't have removed her endo in the previous surgery?
Julianne Hough's medical condition is obviously none of my business. The reason I pose these questions is that I wonder if she is being given appropriate medical advice and the right diagnosis. Since she mentioned endometriosis on a show viewed by millions (many of whom may never have heard of endo before last night), I just wonder how her situation will affect our society's views about endometriosis.
Her unfortunate health problems, which have been diagnosed as endometriosis, could be an opportunity to educate the public about this illness.
I believe public figures have a right to privacy and what Julianne Hough does or doesn't say to the media or on TV about her condition is entirely up to her!! What I am wondering is if she does, in fact, have endometriosis and she does return to the rigorous dancing on the show within days (as reports indicate she might, depending on how her surgery goes), what message will the public hear about this illness??
I hope this will be an opportunity to increase awareness in the general public about endometriosis. My hope is that Julianne Hough's surgery will go smoothly and that she will have a quick recovery.
I do wonder what message will be sent to the public if she does remain in this season's competition. With daily practice being typical and with laparoscopy recovery taking several days at a minimum and even weeks for others, I worry about her pushing herself to get back on the air too soon. I worry that the pressures on her will put her health in danger. I worry that the public may not understand how debilitating endometriosis can be for some endo patients.
Some cases of endometriosis present with milder symptoms than others. I hope that people do not get the wrong idea about what endo is, how long recovery from surgery typically takes, etc.
Endometriosis patients often face attitudes like, "it's in your head" and are often misdiagnosed or dismissed by doctors for many years prior to getting a proper diagnosis and treatment.
The average diagnosis of endometriosis is 9.9 years after the onset of symptoms. Many women search for years to find the right doctor to treat and manage their endo.
My endo symptoms began at 13. I was diagnosed by laparoscopy at 23. I am now 39 years old.
My thoughts are with Julianne Hough today. She is just 20 years old. I hope that she is obtaining sound medical advice about her condition. I worry about her being diagnosed with endometriosis affecting the appendix when she appears not to have had the surgery used to diagnose endo as of yet. I wish her the best and hope that her surgery goes well!
I emailed a fellow blogger who has endometriosis this morning because I know she follows the show. As I am writing this post, I just received an email back from this fellow blogger who has endo.
Apparently, she blogged about Julianne Hough last night:
Being Chronically Ill Is A Pill
Let's hope Ms. Hough's surgery goes well and that her situation increases the public's understanding of this challenging illness.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
4 comments:
Hello Jeanne. Julianne stated on a TV interview last night that she was diagnosed with endometriosis 5 years ago. Here is the link to the interview:
http://abclocal.go.com/kabc/video?id=6473694
My sister has endometriosis. I find it interesting that Julianne has known about it for 5 years now and hasn't done anything about it until a cyst burst last week.
Do endo nad appendix problems often go hand-in-hand?
I hope she will take it nice and easy on herself and allow lots of time to rest and heal.
Meri,
I looked at the link you sent and it was about Dancing With The Stars but it didn't mention Julianne's endometriosis. It was a clip that talked about all of the remaining contestants. So I didn't hear the interview you referred to.
I don't know Julianne's medical history. I don't know if the cyst is endometrial tissue or not. I have had ovarian cysts where were not endometrial tissue even though I did have endomentriosis removed from multiple other areas.
I did see a link that referred to her having a cyst, having endo, and having the need for her appendix to be removed.
http://www.buddytv.com/articles/dancing-with-the-stars/julianne-hough-diagnosed-with-23964.aspx
It said her need for an appendectomy is not related to endo... but it wasn't clear to me if the cyst is endo-related or not.
I had a large ovarian cyst removed during a during a surgery for endo. I did not have any symptoms that would have indicated to me that I had a non-endometriosis ovarian cyst. I just felt like I do with endo and didn't know until post-surgery that I had that particular cyst.
Also, ovarian cysts are fairly common and are not necessarily endo. So she could quite possibly have had no way to know that there was a cyst that could burst. It's hard to tell.
The large cyst I had removed during my 2004 surgery had not been there at the time of my 2003 surgery 11 months earlier. It was pretty large too. So it must have grown quickly. That particular cyst was not endo but was removed while my doctor was doing surgery to remove endo anyway.
She may have been diagnosed several years ago as you had heard but not known that she even had a cyst... or not had the cyst at the time of her previous surgery. It's hard to say.
Everyone's body is different and she may have had completely appropriate treatment since her previous diagnosis.
I truly was concerned that she might not be getting sound medical advice (based on the way I interpreted her comments on-air last night)... and that viewers could get the wrong impression about recovery time post-surgery.
It sounds like she probably is getting good medical care because 15 is very young to be diagnosed with endo. So either she had very astute doctors or something must have prompted her to get surgery while still a teenager.
Now that I have read a news report that her appendectomy is not due to endo, it makes much more sense. Maybe I heard her wrong last night but it sounded from her comments like she was attributing her need for the appendectomy to her endometriosis. I may have misunderstood her.
My appendectomy was actually not for endo either. While my colorectal surgeon and the doctor treating my endo were doing a "double surgery" as a team to remove endo and do a bowel resection to address a paraduodenal hernia/malrotated colon, they just happened to find a carcinoid tumor on my appendix!
Whether there was any endometrial tissue in/on my appendix, I'm not 100% sure. All I know is that they had to remove my appendix to get the carcinoid tumor out.
My best wishes to your sister with her endo!! Please share this blog address with her. :) :)
Thanks for stopping by.
Jeanne
Jannie,
I believe the appendix is a less common place for endo to form than many other spots. I don't know the exact stats for that. I have read (since I posted this morning) that her appendectomy scheduled for today is NOT because of her endo. I heard from "Meri" (see comment above) that her endo was diagnosed 5 years ago. So it sounds like her diagnosis was made at a very young age!
I hope she will take it easy too. I know it takes me weeks to get back to where I was pre-surgery and that I've had surgeries only when my pain caused me to be desperate enough to have another opartion. So it really can take time to heal from laparoscopy.
My appendectomy was done during a laparotomy (major surgery) to remove endo, do a bowel resection/hemicolectomy, and remove the carcinoid tumor they just happened to find by accident. (By "they" I mean my 2 surgeons. See above for more details on why I had 2 surgeons at once).
I know from being in endo support groups in my community since 1992 that many women need weeks rather than days to recover. That is why I was so concerned when I read she might miss 4-5 days depending on how her surgery goes.
Even if they remove her appendix laparosopically, I can't imagine how on Earth she could do the kind of dancing she does 4-5 days post op. I know 20 year olds may bounce back quicker than 30-somethings. At the same time, my first 4 surgeries took place in my 20s and there is NO WAY I could have exerted myself a fraction of what she does on that show anytime that soon post-op. That's why I was really concerned.
With her being in the public eye, I'm guessing she may feel even more pressure to return to work than those of us who are not in the public eye. In my 20s, I felt heavy pressure to return to work and there were no TV cameras on me or press writing about my condition.
Jeanne
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