Dancing With the Stars – Endometriosis

While I don’t watch this show, I have heard about the controversy surrounding two of the stars’ recent admittance of having Endometriosis. The first being Julianne Houghs. She is quoted as saying, “They want to clean out the cysts and take out my appendix, too, because later on it can be affected by the cysts.”  I’m assuming – in this case – if these were endometriomas then there would be no need for a diagnostic lap because the doctor would know what she had. I’m sure, with the money that doctor is probably charging in Hollywood, a CA125 was done to rule out cancer for those thick walled cysts since she hadn’t already had confirmed endometriosis. Thus, leaving only a diagnosis of endometrios and no need for a diagnostic lap. Still though, from a public relations perspective – it would’ve been wise for her to stay mum until after the surgery and then come out with her diagnosis since both the EA and ERC say a laparoscopy is the only definite way to confirm endometriosis.

Now, Lacey Schwimmer is another issue. She is quoted as saying, “I went to go get checked out today and I actually have the beginning onset of what Julianne has, which is endometriosis, and it hurts very bad,” admits the dancer. “Right now I’m insanely weak, and the room is spinning.” If her doctor suspected she had endo, he should have put her in for a lap to diagnose it and clean it out, and help her pain and weakness (which I assume is from blood loss). The earlier endometriosis is diagnosed the better the outcome for the patient! Just tossing an endometriosis diagnosis onto every painful or heavy period can be dangerous, and I’ll get into that after I offer two quotes below:

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”.

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

Now, with that being said: While endometriosis can ONLY be diagnosed definitively by a laparoscopy, doctors will often go on patient history coupled with family history, and symptoms and give a “possible diagnosis of endometriosis” or “suspected endometriosis.” Why is this important? Because there are a few medicines that insurance companies will not pay for until a laparoscopy has been done to confirm endometriosis. Until then, a doctor cannot use medicine like Danazol or Lupron to treat “suspected endometriosis.” I had “suspected endometrios” for over 10 years. My doctors were sure that’s what I had based on my symptoms, what medicines worked and didn’t work, and the fact that my mother had it and my aunt. BUT even they told me it couldn’t be confirmed until I had the lap.

NOW – why does the EA and ERC, and the American Medical Association call for laparoscopy to confirm the presence of endometriosis in order to make the diagnosis? That is because there are a host of pelvic and abdominal maladies that can mimic the disease, and often endometriosis sufferers suffer from at least one of them as well (i.e. IBS).

These are:

Infection – this is especially true if your symptoms come on suddenly and out of the blue.

Diverticulitis

Irritable Bowel Syndrome

Inflammatory Bowel Disease

PID

Vaginitis and BV

STD’S

Functional Ovarian Cysts

Ectopic pregnancy

Do you see the need for the laparoscopy protocol???

Let me provide a real life example of the importance for DIAGNOSIS:

My sister, she was 22 when this occurred, began bleeding profusely. Soaking pad after pad, months rolled into one after the other until she went three months without a single break in her period. That’s three months without a day where she didn’t bleed. I never had excessive bleeding with my endometriosis – mine is all pain. My mother, though, bled constantly. My mother told my sister that that was how her endometriosis started. Since my sister couldn’t get into the doctor right away, she felt she could wait another two months through this hell of constant bleeding until her annual exam. At her annual she described what was going on, her family history, etc. Her doctor said that it could be endo since my sister did have a history of some nasty periods and had a failed marriage because they tried for 2 years to have a baby and couldn’t get pregnant. My sister asked to be treated, doctor said all I can give you is a depo shot to stop the bleeding because it’s not confirmed. They agreed to see if that would stop the bleeding first because my sister didn’t have the time at work to take for surgery. Meanwhile, her pap results came back – she didn’t have endometriosis…. her bleeding was from cervical cancer.

I am not discrediting the fact that the  women have endometriosis. I am sure they do and feel horribly for them. No one should have to get this disease. It’s a terrible, chronic malady that needs a cure. It afflicts too many women! We should stop bickering and band together to fight this! That was the point of Jeanne’s petition. Endometriosis is getting attention right now because of the DWTS’s celebrity, but the wrong message is getting out there. Her petition is simply calling for more media coverage of the FACTS. And we need that. How is this disease DIAGNOSED and TREATED? Let’s get that covered on Oprah. A whole show devoted to it. Could you imagine the women we could reach in that ONE HOUR? Women who are sitting on their couches, laying on their beds, in pain, curled into balls, slaves to their heating pads, drugged on pain killers? We could reach them with a message of hope, a message of “there may actually be something wrong with you other than just a painful period.” We could give them reassurance that it’s not all in their heads. There is nothing wrong with living with a “suspected endometriosis” diagnosis, especially if you’ve ruled out the biggies that could kill you. But the lap can confirm, open up pathways to better treatment, and can give you that “I told you so” leverage we endo sufferers need when we are laying curled up on the couch knee deep in tissues.

Please, let us stop this bickering and sign Jeanne’s petition. You can find it here:

http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures-page1.html

There is nothing wrong with more awareness and education when it comes to this disease – or any disease.

Let me finish by saying I do not discredit that either DWTS woman has endometriosis. I am not their doctor, nor do I have access to their personal medical records. I am just going off of how they are presenting their endometriosis to the public. As celebrities they have a responsibility to their fans to be responsible with their words. Before saying they have a disease or illness, they should make sure they have been accurately diagnosed with that disease. There are some diseases and illnesses that if a celebrity came out and said they had without a diagnosis, there would be a backlash – i.e. cancer. Could you imagine if Christina Applegate had come out and said “Well, I felt a lump and knew it was cancer so I announced it as such before I had a mammogram.” No, she had a mammogram and a biopsy before she announced to the public that she had breast cancer.

People who suffer from diseases, especially chronic diseases, do not take it lightly when some one comes along and willy nilly says they too suffer from it without proper diagnosis.  A doctor should always be cautious and add “suspected” or “likely” before a disease or illness until it is confirmed.

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11 responses to “Dancing With the Stars – Endometriosis

  1. Endochick,

    Thank you so much for this amazing, comprehensive post!! You made some excellent points about the fact that endometriosis can be confused with other conditions!! I have been blogging about this issue myself…

    I greatly appreciate your support and your wonderful post here.

    Your sister’s story is a perfect example of why symptoms and family history *ALONE* cannot confirm endo!!

    As stated here, the Endometriosis Association and the Endometriosis Research Center both say a lap is the way to diagnose endo. (Please see the links Endochick gave for more info)…

    For readers who may wonder what Endochick meant by, “we should stop bickering and band together to fight this”… I had emailed Endochick about a very upsetting experience I had in an endometriosis forum last night… where endo patients there didn’t see the need for a lap to diagnose endo and posted accordingly. This caused me great concern!

    Again, the example Endochick gave about her sister NOT having endo as the cause of her symptoms is what I worry about when I hear the press statements on Julianne Hough & Lacey Schwimmer. I’m NOT attacking these dancers… as some in the forum last night seemed to think. I am just concerned about mixed messages being disseminated to the public!

    These recent press releases could do more harm than good…

    I gave references on that forum to the EA’s and ERC’s statements about how to diagnose endo because some forum members seemed to think a lap is not necessary.

    My endo awareness petition was attacked on that forum and members of it have engaged in name calling (of me) there. (I will no longer be posting comments there because I simply don’t have the energy to deal with the negativity).

    A member of that forum that I visited last night actually went on to post a comment on my blog last night… calling my endo awareness petition “ridiculous”. Please see the petition link Endochick provided. I don’t see anything ridulous about it. I *do* see numerous comments from endo patients, their moms, their sisters, their husbands, their grandmothers, etc! (You may view the petition comments by clicking on the link from Endochick).

    Bella (the woman who posted on my blog last night about my “ridiculous” petition) went on to comment that the women who sign the petition are the ones who “can afford” surgery for their endo (you can see her exact phrasing on my blog at: http://www.endendoat.blogspot.com on the post titled – “Endometriosis Blog: Letters And Petition Sent To Oprah And The View To Create Awareness & Understanding About Endometriosis”).

    The comments from “Bella” were hurtful to me but that’s ***NOT*** what I am concerned with. What concerns me is that women from that forum are passing along the comments that reinforce the confusing statements made by Julianne Hough and Lacey Schwimmer… statements that are confusing to the public and to endo patients alike!

    Some of the forum members apparently took offense to my endo awareness petition. I don’t understand why, really, but that is really their business.

    HOWEVER, if someone is going to slam the petition that 160 people have signed, that is an insult to all 160 of those people. So I did speak my mind about the petition I started AND the need for a lap to diagnose endo on last night’s forum. (I’m not twisting anyone’s arm to sign it).

    If I see the petition getting bashed and women saying laps are NOT necessary to diagnose endo… then, yes, I will quote EA and ERC comments about a laparoscopy being necessary to confirm an endo diagnosis.

    If doing that made me unpopular in that particular forum, at least I posted the EA/ERC facts before choosing not to post there anymore. I won’t try to convince anyone of what the EA and ERC both say. They will believe what they see fit. (I had enough time in that forum last night. I don’t plan to go back).

    At least my comments are posted there so that it will give others pause before automatically buying into the myth that endo can be definitely diagnosed without a lap… as these women asserted in the forum.

    If Endochick’s sister’s doctor had just assumed her problems were 100% endo and she had NOT been checked for cervival cancer, that would not be a good thing!!! She had suspicious symptoms and she had family history… but endo didn’t cause her bleeding. Cancer did. This is a perfect example of how harmful “endo myths” can be. That is an example of exactly what I fear… that the DWTS announcements may confuse the public…

    Endochick, this is an awesome post as always!!!

    🙂

    Jeanne

  2. i’m secondning that Jeanne! 🙂

  3. Thank you, Jeanne and Allisyn! 🙂 I’m here to help, as always.

  4. Dear Endochick

    I’m living on the other side of The Pond so there are some items in your blog that I’m not familiar with – although your medical issues are, sadly, all too familiar.

    I have started a blog – mainly to get some things off my chest – and would be grateful for any comments or suggestions you may have. When you may have a moment, please feel free to visit foxywaitingroom.wordpress.com

    With kindest regards

    Foxy

  5. Thank you for a fabulous post. As I mentioned on Jeanne’s blog, from the very beginning into my research on what’s causing me pain, up until I had the surgery last year, I always used the phrase “possible endo” or “suspected endo”. I guess when a celebrity says something it must be 100% real and accurate, right? *rolls eyes*

    Oh! One other thing to add to the “possibilities” list: Interstitial Cystitis. Causes a lot of the same pains, but stems from the bladder.

    🙂

  6. Hello Endochick. I read this, your guest post, on Jeanne’s Endo blog and wanted to come over here to thank you for listing the many possible conditions that may indeed mimic endo conditions. It is indeed of the utmost importance that correct diagnoses be made.

    And a great big thanks to Jeanne too. I met her via her Endo Blog a while back and never cease to be amazed by her efforts to help and educate women. The time and energy she is putting forth with the petition to raise endo awareness and understanding, even in the face of that incomprehensible “static” of late is nothing short of making her my hero.

    Although my endo was able to be controlled, in fact stopped (after diagnosis via lap and surgery,) there are still so many women out there suffering, given less than optimum care, even given misinformation by doctors. Any awareness that can be raised to help dispell myths is a step in the right direction.

    Thank you!

  7. Endochick: THANK YOU again for this great post AND for Guest Blogging on my blog so we could get this great article seen by even more people!! 🙂 Your blog helps so many people.

    Allison, Allyson, Jannie, and Kristen: Thank you for your supportive and kind comments both here and on my blog about this.

    Foxy: I look forward to checking out your new blog. Thanks for adding your voice here about this important topic! 🙂

    —–

    Jeanne

  8. Oh, P.S. I am still paying for my medical bills too after 9 years! Let’s hope for some kind of a comprehensive healthcare program soon that won’t send us all into the poorhouse.

  9. Pingback: Response to a Pro Dr. Seckin Comment « Endometriosis: the silent life sentence

  10. i have to say that ive suffered for many years with this and find the information here fantastic, great to know im not alone out there, thank you.

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