In the beginning of my pelvic pain journey, I saw an Obstetrician/Gynecologist who felt sure I had Endometriosis after a manual exam he claimed he could feel it on my pelvic floor. He told me he would do a Laparoscopy to remove it and I would be good as new. During the surgery, he said he couldn’t see any Endometriosis but diagnosed me with Pelvic Congestion Syndrome. This was in 2010/2011.
In 2012 I underwent a Hysterectomy for prolapse with the same OB/Gyn and still, he found no Endometriosis.
In 2015 I started working with a Gynecologist who specialized in Endometriosis and during my first Laparoscopy, he found several lesions of Endometriosis that were very deep and very old. This taught me my first lesson on Endometriosis: it can’t be diagnosed manually, and not all providers are able to recognize even during surgery.
It takes the average woman 7.5 years to be diagnosed properly with Endometriosis. Seven and a half years of pain and suffering before they find the root of the pain. It took me five years to get diagnosed after my first flare up.
Other facts that not everyone understands about Endometriosis:
- The amount of disease does not determine the amount of pain and complications it can cause.
- There is no cure for Endometriosis. Even after Menopause. After excision surgery, it will grow back and everyone’s experience is different.
- Not every provider is a specialist in excision surgeries and there is a difference in technique between using lasers to burn them off and actually cutting down to the root to remove it.
- It doesn’t only grow on your reproductive organs. It can grow on your bowels, kidneys, liver, bladder, lungs, heart and even your brain.
For more information about Endometriosis check out these links:
Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
Vital Health: https://www.vitalhealth.com/endo-blog/what-it-really-means-to-have-endometriosis/
Center for Endometriosis Research and Treatment (CERT): https://health.ucsd.edu/specialties/obgyn/endometriosis/Pages/default.aspx