The treatment that worked to control my Endometriosis will work to control your Endometriosis.

We’d all like to think that the medical community has such a hold on Endometriosis that they know which treatments will work for all sufferers.  But, unfortunately, it isn’t so.  It’s kind of a guessing game.

Lupron Depot worked for some, yet doesn’t work at all for other , AND can completely cause severe life-altering, permanent side effects for other patients.

Birth control (pills, injections, IUD, etc.) may work for me, but it may not work for others.

NSAIDs may work for me, but guess what?  Not everyone can feel the benefits of these pills.

A change in diet may work for a lot of EndoWarriors in controlling or suppressing their symptoms, but not every one.

A hysterectomy may work for some, but not all.

Having a child may work for some, but not all.

Excision or ablation surgery may work to alleviate symptoms for many, but not all.

Herbal supplements may help some, but not all.

Eastern medicine, or other non-conventional treatment, may help a lot of patients, but not all.

It’s a crapshoot.  Each one of us who suffers with Endometriosis must decide which course we will take.  Try numerous approaches.  Continue to fight until we (hopefully) find a course of action that helps alleviate the pain and other symptoms of this disease.

And yet, there are some women who have exhausted each of these remedies, but still continue to suffer.  Lost. Hopeless. In pain.

But the one thing we all have in common?  We all have each other.  Hang in there, Warriors.

Any gynecologist can surgically remove Endometriosis.

Endometriosis is largely considered a gynecological disease.  So it makes sense that your gynecologist would be the one to suspect it, open you up, remove, and diagnose the disease.  Right?  Wrong.

Although some of us have been lucky enough to have gynecologists who are skilled Endo excision surgeons; many women are not.  Some physicians will never even suspect Endo, or claim it’s “all in your head,” denying any further diagnostic tests or studies.  Some gynecologists simply will not perform a laparoscopic surgery, claiming a continuous regimen of pain pills and injections will suffice to mask the pain.  Others will open you up to confirm the presence of the disease, only to sew you back up and refer you to a “qualified surgeon” for the removal of any Endo and/or adhesions.

Not all doctors are created equal.  And it’s unfortunate.  And not all people with Endo have it in the same spot.

Your gynecologist or excision surgeon may be able to remove Endo from your pelvic area and some of your torso; however, if Endo is found in other locations such as the lung, spine, or brain, you’ll be referred to a surgeon specializing in those areas of the body.  It is not purely a gynecological disease.

It is purely an insane mess.

Women with a higher stage of Endometriosis are in more pain than those with a lower stage.

There are four regularly accepted stages of Endometriosis: 1 through 4 (I – IV).  I was diagnosed with Stage IV Endometriosis, but does that mean my pain was far greater than someone with Stage I?

No.

The Stage level merely identifies the intensity of presence and damage by Endometriosis and adhesions.  And oddly enough, someone with Stage I, with very little Endo present, may have far greater pain that someone with Stage IV.  And someone with Stage IV may not have any symptoms and be stunned to learn they have Endometriosis.

Does that mean someone with Stage IV doesn’t have pain? No.  This disease is individualized for every woman.  There is no “standard” way to diagnose a woman’s pain level purely based on the stage of her disease.  Any woman with Stage I, II, III, or IV may have no pain or may be in excruciating, debilitating pain.

Endometriosis is hereditary.

Many conditions are passed down from generation to generation…something in the genes.  But is Endometriosis passed down from generation to generation, effectively cursing the female members of a bloodline?  Yes and no.  If your mother, sister, or aunt have Endometriosis, you have a greater chance of having it yourself.  But are you guaranteed to have Endo if your close female relative has it? No.  And a lot of Endo sufferers do not have a family member with Endo.

If you have Endo, are you going to pass it on to your daughter?  Maybe.  Maybe not.

The good news?  There are ongoing studies to identify the genetic markers and risks of Endometriosis.  One day they’ll figure this out.

Only women suffer from Endometriosis; men cannot get the disease.

It is said that 1 in every 10 women suffer from Endometriosis.  And often times I hear, “If men had this disease, there’d be a cure right away!”  But can men contract this seemingly gender-biased disease?  You betcha!

There have been documented cases of men developing Endometriosis implants and lesions after undergoing estrogen therapy due to prostate cancer.  And even a rare documented case of a very healthy man being diagnosed with Endometriosis.  For more information on those stories, click here.

Women with Endometriosis only suffer from Endo pain and symptoms during their periods.

It is unknown why every woman’s Endometriosis pain, symptoms, and severity is different from the next.  But, some women only suffer from their Endometriosis during their monthly cycles, other women are in constant, daily pain.  Constantly.

So to be told that our pain is related to our period or PMS is just frustrating.  It isn’t.

My pain isn’t just “bad period cramps.”  They’re severe and terrible and debilitating due to this disease I have.  But…I am lucky.  Mine is usually only during my period…

Others aren’t so lucky.  Their pain may be every day. EVERY DAY.

It’s awful.

Endometriosis will one day be diagnosed through a simple blood test.

There are several past and ongoing studies which are trying to identify “markers” which may lead the medical community to diagnose Endometriosis through a blood or tissue sample.  Imagine it: a non-invasive, conclusive diagnosis.  It’s still a theory…a hope…

Dr. Agarwal and Dr. Foster of San Diego’s Center for Endometriosis Research and Treatment are currently working on a project to see if a “BDNF” blood test will help diagnose Endo.  They have high hopes for this project.

The Feinstein Institute of Medical Research has an ongoing study to collect and evaluate DNA and menstrual blood samples of women with, and without, Endometriosis.  Their hope is to identify additional markers that separate Endo Sufferers from the general population.

CA-125 has been a long-studied biomarker which may indicate the presence, or recurrence, of Endometriosis.  Unfortunately, it has been deemed widely unreliable.  It is also used to attempt to diagnose ovarian cancer.  Additional studies are ongoing.

With persistent research, perhaps one day Endo will be simply diagnosed with a blood test!

Keep up the good work, Scientific and Medical Community!

A woman with Endometriosis may require surgeries to cut out the disease for the rest of her life.

Excision surgery is the “gold standard” for treating the symptoms associated with Endometriosis.  Surgeons cut out (excise) the Endometriosis implants that are found within the body, and also remove/cut free any adhesions that may be sticking organs together.  Some women claim immediate pain relief after their first surgery, some do not.  And countless women have to later undergo numerous excision surgeries, some in as little as six months after their last surgery.  Some women are pain-free for several years before having to go under the knife yet again.

Hysterectomies and menopause do not even relieve some womens’ Endometriosis symptoms.  Many women who are post-hysterectomy or even post-menopausal continue to suffer from Endometriosis pain and symptoms and continue to undergo excision surgeries.

Many in the medical community claim to be “the best” at an excision surgery; stating that once a patient sees them, they never have to undergo another surgery. Ever again.  Alas, while that may be true for some very lucky women, it is not true for all women.  And many patients who have seen these “experts,” later return for subsequent excision surgeries.  It’s not the surgeon’s fault…Endo just continues to fester and grow.

It remains that excision surgery is the most widely accepted treatment of Endometriosis.  And despite a well-balanced “endo diet,” supplements, prescription medication, and/or lifestyle changes, many women continue to suffer after their surgeries, and continue to require more.

It’s a vicious cycle.