Endometriosis Blog: "Endochick" Is Today's Guest Blogger On The Topic Of The Endometriosis Awareness Petition and Dancing With The Stars!

Meet Endochick.

She writes Endometriosis: The Life Sentence. I have followed this blog for quite awhile. It is fantastic!!

To date, we have 171 signatures on the petition referenced below to create awareness of endometriosis... Feel free to sign it if you like!

Endochick's witty sense of humor, great insights, and educated comments always keep me coming back for more. Endochick has given me permission to reprint her blog post from yesterday as a "Guest Blogger" post here today. What follows is her post from November 13, 2008. I greatly appreciate her allowing me to re-post it here and encourage you to check out her blog. For more of Endochick's endometriosis writings laced with an amazing sense of humor and the sad truths about what living with endo can be like, I encourage you to check out her consistently high-quality blog.

Endochick's "Dancing With the Stars - Endometriosis" post from her blog Endometriosis: The Life Sentence:

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 Hough’s. 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 our cancer for those thick walled cyst since she hadn’t already had confirmed endometriosis. Thus, leaving only a diagnosis of endometriosis 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 Endometriosis Association and Endometriosis Research Center 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 period 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 definitely 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 endometriosis” 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 do the EA and ERC and the American Medical Association (AMA) 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 month 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 terribly 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 there couches, laying on their beds, in pain 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 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:

Create Awareness & Understanding About Endometriosis

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 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 someone 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.

Related link (that contains MANY other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.