Tag Archives: Jeanne’s Endo Blog

*ENDOMETRIOSIS AWARENESS* Letter Campaign Example!!

As many of you may be aware, March is Endometriosis Awareness month. In an effort to increase education and awareness, especially of correct treatment and surgical options, and in an effort to put a positive light on Endometriosis in the media, some of us health  bloggers will be encouraging you to write to local, state and national media. Jeanne from Jeanne’s Endo Blog needs to be commended for taking the innitiative to concieve of such a campaign. Thank you, Jeanne.

I’ve included an example of a recent letter I composed for Mariela Azcuy, the Senior Associate Direct of PR for the Meridith Corporation. It is best, when addressing a business orginazation, to stick to a business format in your correspondence. And try to keep it concise.  Get your necessary facts in, but don’t make it boring. A boring letter will end up in the trash. You need to make the reader aware of the seriousness of your cause without over dramatizing it. And struggle as you may, it may not be the best idea to include long, drawn out, personal stories in an awareness letter. An awareness letter needs to focus on:

1) Your cause

2) Why this needs coverage

3) Relevant facts and figures pertaining to your cause

Journalists especially, and other media personel, are busy people. If you send them a multi-page document or email, they are likely to skim over it and toss it. Send them a nice, concise 1 page (2 pages at most) letter with facts and figures, and you’ll more than likely get a call back. Why? It’s easy to pull even a small piece from a 1-2 page letter if there are  figures they can quote. With one simple 10-15 minute phone call to the letter’s author, they have an easy write up for their paper or magazine with little effort. I’ve done it before (once with a pamphlet from a city council meeting!).

As promised, here is the example of my letter to Mariala Azcuy. Please remember that my work on this blog is copyrighted. You may use this example as a reference, and I hope it inspires you.

My Letter:

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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.


Irritable Bowel Syndrome

Inflammatory Bowel Disease


Vaginitis and BV


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:


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.