Saturday, August 24, 2013

Three Questions to Ask Your Surgeon Before Being Operated On

Three Questions to Ask Your Surgeon Before Your Operation

Most endometriosis patients have similar experiences when it comes to finally being diagnosed with the disease. It starts with the appearance of a host of inexplicable unpleasant symptoms that show up a few years after menstruation begins. Many women go from doctor to doctor, trying to figure out what exactly is wrong with them. Some women will come across a knowledgeable gynecologist and figure out early on that it is endometriosis. Some women will not be diagnosed with endometriosis until they are having fertility issues. 

For most women, their first surgery to treat endometriosis is not performed by an expert endometriosis surgeon. For most women, their first surgery is performed by a well-meaning gynecologist or reproductive endocrinologist.  These doctors go in and ultimately do more harm than good.  They use surgical techniques that actually cause the endometriosis to spread in the future.  They will prematurely do hysterectomies on patients because they feel it is the only solution. They can damage vital organs in the body while trying to remove the endometriosis due to their inexperience. Or they simply leave endometriosis in places they do not feel comfortable operating on.  Some doctors open a patient up and quickly close them up after seeing how bad the disease is. They realize immediately that they are over their heads. Patients may get temporary relief from these surgeries but often, within months, they feel worse than they did before the surgery.

Here are three important questions to ask your surgeon before agreeing to be operated on:

Do you use the excision method to remove endometriosis?

Dr. Seckin, expert endometriosis surgeon and co-founder of the Endometriosis Foundation of America, uses the excision method to remove the endometriosis. This is the best way of removing endometrial implants. Endometriosis is like an iceberg. Doctors can only see the tip of the disease when looking at it, but the majority of the disease lies deep below the surface. Most gynecologists and reproductive endocrinologists use laser ablation and vaporization to remove the endometriosis. Not only can heat damage the ovary, but when a doctor burns away the endometriosis it turns the tissue black, making it very hard to see if there is endometriosis that needs to be removed from the surrounding tissue. More importantly, this method does not remove the deep infiltrating endometriosis that lies beneath the surface. Only excision can address that. Some experts believe that vaporizing the endometriosis can actually spread it to more places in the abdominal cavity. This method also does not remove the majority of the disease.

If I have endometriosis on my bowels, ureters, nerves or any other places that is not related to my reproductive system, will you remove it? Will you have other experts involved in my surgery who know how to treat endometriosis?

Most doctors are not endometriosis experts. Most often, gynecologists and reproductive endocrinologists will ablate endometriosis off reproductive organs in hopes of giving their patients temporary relief or helping them achieve pregnancy. When they go in and see that a patients’ bowel is connected to her uterus or her ureters are attached to her pelvic wall, they don’t know how to handle it. Doctors will do what they can, but will leave the bulk of the disease. Ultimately this just creates more scar tissue and more pain for the patient.  Dr. Seckin will gather a team of professionals that are adept at treating endometriosis. He will have an urologist, a gastroenterologist, or a neurologist involved with the surgery if a patient needs extra care. It often takes a team of experts to combat this disease.  It is important that your doctor has a plan for treating ALL of your endometriosis.

Can you make preserving my reproductive organs a priority?

The old school way of treating endometriosis was to offer patients two options, Lupron or a hysterectomy. It is extremely surprising to hear that so many doctors still only offer these solutions, whether a patient is 19 or 46. Expert endometriosis surgeons will try their best to free and preserve the fallopian tubes, ovaries and the uterus of their patients. Dr. Seckin has not only helped many patients live a life that is more pain free, but has helped them achieve pregnancy after surgery. Sometimes the endometriosis is so wide spread or adenomyosis is so severe that even the best expert will have to perform a partial hysterectomy or a full hysterectomy on a patient.  It is one of the many devastating, lifelong impacts of this horrible disease.

Search for the Best Care

For many patients, when their doctor finally puts a name to their lifelong symptoms, there is an immediate sense of both gratitude and fear.  There is the attitude that since this is the one doctor that could finally put a name to my misery, than he/she must be able to fix it. In this time of crisis and acceptance, endometriosis patients must behave like patients being diagnosed with cancer. They must seek out the best, most knowledgeable endometriosis surgeons to ensure quality care and treatment of this debilitating disease. Hopefully one day, expert care will be available in every city, covered by every insurance plan, to lessen the already heavy burden of the patient.


Sunday, August 4, 2013

EndoWarrior The Song!

Some of you may be surprised by this, but I like to write music! I know, I know, crazy right? I am a social worker!! But sometimes I am lucky enough to be on the side of inspiration. Sometimes the angels whisper in my ear, sometimes they hit me over the head with a frying pan. This is one of the frying pan situations. As many of you know, the Million Women March for Endometriosis is happening this March in DC and in cities all over the world. I feel like there needs to be a rally song, a song to unite us all, to make our voices heard, to explain to the world what we feel on a daily basis. I titled the song after one of my favorite Endometriosis Support Groups and a popular hashtag on twitter that explains how fierce and brave us endometriosis patients are. Below is a link to the song.  A fellow Endowarrior, Rachel Cohen, is performing it with her beautiful voice. She is not only a singer, but an author and is compiling a book of stories from endometriosis patients from around the world. Check out her blog at

EndoWarrior Working Lyrics

People say I’m crazy,
That I’m just not strong enough.
People say I’m lazy,

That it’s time that I get tough.
They don’t understand,

This pain I can’t ignore.
It hurts with every breathe,

I can’t take it anymore.
I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.
But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.
Surgery after surgery
The many scars run so deep.

And yet it always seems,
Nothing brings relief.

Hard to keep my head up,

Feel so all alone.
Countless hours spent,

With my heating pad at home.

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.
But, I’ll no longer listen to your words that are only hurting me.

I am a warrior you will see.

It’s time we come together and stand as one in pain.
It’s time for once our cries aren’t heard in vain.
If we lean on each other our power will not wane.

The mountains I have climbed,
One day you will understand

Then you’ll finally know
How strong I really am.

I may not be strong enough or tough enough for you.

You may not choose to see my reality as truth.

And I’ll keep fighting this disease that has completely ravaged me.

I am a warrior you will see.

Endowarrior you will see.