Reader’s Choice : Diagnosing Endometriosis

Blood in a test tube

So it’s Sunday, which is Reader’s Choice day, and a friend of mine asked if doctor’s can tell a person has Endometriosis by abnormal blood test results.  I know the answer is “no,” but wanted to delve into the different ways Endometriosis may be diagnosed, and the future efforts of modern medicine to help diagnose Endometriosis. 

A run through of your symptoms:

Your doctor may ask you to describe your symptoms, but this is assuming you realize your pain isn’t normal.  Symptoms of Endometriosis include pelvic pain, bloating, infertility, pain during sex, diarrhea, constipation, lower back pain, and leg pain. I’ve always complained of painful periods to my gynecologists in the past and was simply told it was “normal” and was prescribed Naproxen Sodium to manage the cramps.

Pelvic Examination:

During an exam, your doctor may palpate and manually feel your pelvic area and/or rectum for nodules, cysts, or abnormal, sharp pains.  The Endometriosis implants will more than likely be too small for your doctor to feel; however, some Endo may form cysts, which they may be able to discern.

Imaging Studies (Ultrasound, CT Scan, MRI):

Ultrasounds, whether they be external or transvaginal, will aid your doctor to see if there are abnormalities or cysts on your reproductive organs.  I had numerous ultrasounds the year leading up to my surgery : the presence of cysts had my doctor worried as we monitored their growth.  My last transvaginal ultrasound was very painful when he would go near my ovaries, which led him to order my MRI.

CT scans use slices of x-rays for a deeper look into your body. Dyes can be used during CT scans to offer a contrasting view; however, CT scans are generally used for bones and non-soft tissues.

MRIs use magnets and radiowaves and offers an often deeper and different glance into your body than ultrasounds or CT scans, Soft tissues are more visible in an MRI.  Dyes may be used for contrast and a better visual picture of your insides.  After my MRI, what my physician thought was a regular cyst was read by the radiologist as a dermoid cyst on my left ovary and a small cyst on my right ovary.  It’s the reason we had my laparoscopic surgery : to remove the possible cancerous dermoid cyst.

Laparoscopy or robotic laparoscopy:

To date, this is the only way to confirm the presence of Endometriosis.  It’s what referred to as “The Gold Standard,” the only tried and true method of diagnosis.  The doctor must “open you up” and physically go inside, see the implants, and remove the implants and adhesions.  In my case, I had a robotic laparoscopy. Once the doctor was inside my abdomen, he learned it was not a dermoid cyst, but rather a chocolate cyst (endometrioma) which had decimated my left ovary. He also was surprised to find Stage IV Endometriosis throughout my pelvic cavity, on my liver, on my diaphragm, and bowel. Pathology reports confirmed his findings.

Due to the lack of non-invasive testing, and a general “unawareness” of the disease and it’s symptoms, diagnosis may take 10 years or more.  Had I only known 20 years ago that it was not normal…

Potential Blood Tests for Recurrence:

CA125 is a blood test that may or may not help in the determination that Endometriosis has returned in a woman who has undergone laparoscopic excision surgery.  CA125 plasma is found in all women, with or without Endometriosis.  Endometriosis sufferers apparently have a higher level of CA125 plasma in their system.  For a woman who has had her Endometriosis implants excised, supposedly her CA125 levels return to normal, stable levels.  If those levels become significantly elevated, her physician may suspect that the Endometriosis has returned and it is time for another laparoscopy.  However, Serum CA125 blood tests are not a certain way of diagnosing the presence of Endometriosis.

On a side note, CA125 tests also act as a “biomarker” to test for women who may have Ovarian Cancer.  They would also show elevated levels of CA125.  Another reason why this biomarker test is not a proven way to confirm the presence of Endometriosis.

New Tests Being Developed:

There may be a tissue-sample test to help diagnose Endometriosis on a genetic level.  Certain genetic qualities may present themselves, even altering slightly with the different Stages of Endometriosis.  However, this research is very recent (published September 2014) and greater testing of their findings is needed before an actual procedure can be used in modern medicine. 

An Australian team believes they’ve found a way of diagnosing Endometriosis by running a biopsy on a sample of the uterine lining (endometrium) and testing it for the presence of Endometriosis nerve fibers.  This study was published in 2009 and further testing was needed.

There are also ongoing research studies to continue to identify the genetic breakdown of Endometriosis. The Feinstein Institute was commissioned by the Endometriosis Foundation of America to conduct tests and after two years of literary research,they have finally begun the ROSE Study.  Research Outsmarts Endometriosis will study 200 women per year by testing their DNA, Endometriosis biopsies, medical histories, etc. to get a better glimpse into Endometriosis on a molecular and genetic level.  The results of this study may lead to further avenues of non-invasive diagnoses.

UC San Diego is also currently researching the variant levels of protein levels in healthy women vs. women with Endometriosis.  The World Endometriosis Research Foundation continues their efforts to aid in standardized collections of samples and data for Endometriosis research.  And the World Endometriosis Society holds a Congress every few years to discuss present studies and findings and future efforts to help not only diagnosis but cure Endometriosis. 

With all of these studies, efforts, and brilliant minds, there will be a non-invasive test one day in the future.  And there will also be a cure. One day.

Resources:

Endocrine Society

Endometriosis Foundation of America

Endometriosis.Org

EndoResolved.Com

ListenUp.Org

Mayo Clinic

MedinceNet.Com

Human Reproduction (Abstract, 1995) CA-125 and Endometriosis

ScienceDaily.Com

The Feinstein Institute

The World Endometriosis Research Center

UC San Diego

University of California San Francisco

Clinical Obstetrics and Gynecology (Article, June 2010) – Invasive and Non-Invasive Methods for the Diagnosis of Endometriosis

University of Texas

WebMD

Wikipedia

World Endometriosis Society

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from my friend, Erin Curlee, “Can they (modern medicine) tell that a woman has Endo by abnormal blood tests?” So research began!  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

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