Post Traumatic Endometriosis Syndrome

hink I might be suffering from “Post Traumatic Endometriosis Syndrome.”
The DSM-IV classifies “Post Traumatic Stress Syndrome” as having the following criteria:

The person has experienced a traumatic event that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others, and the person’s response involved intense fear, helplessness, or horror;

The traumatic event is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams of the event;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness;

Persistent symptoms of increased arousal, such as hypervigilance or irritability;

Duration of the disturbance is more than one month; and

The disturbance causes clinically significant distress or impairment in functioning.

I can’t find any classifications in the DSM-IV for the following, more specific criteria:

The person has experienced a traumatic event such as Endometriosis, in which she sustained repeat surgeries and/or ineffective medications, to which her response involved intense fear, helplessness, horror and suffering in silence;

The traumatic events of life with her incurable disease is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams, such as memories of surgery and/or ongoing or previous pain associated with the disease;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness, such as the avoidance of normal social interaction, for fear of having a “pain attack,” or avoidance of such settings as baby showers and the like, for fear of having an emotional breakdown due to one’s own infertility;

Persistent symptoms of increased irritability, due to living in chronic pain and having such symptoms summarily dismissed on a regular basis by healthcare providers and loved ones alike;

Duration of the disturbance is more than one month, sometimes even more than 15 or 20 years; and

The disease causes clinically significant distress or impairment in functioning.

I qualify for almost all of the above criteria. Anyone else? Having not been able to find a suitable classification for this disorder, I have now begun calling it “Post Traumatic Endometriosis Syndrome.” It fits.

Rarely do I share such personal introspection on my private battle with the disease, for I fear to do so would show a crack in my armor of hope. I have been Endometriosis-free for nearly 3 1/2 years – physically. Mentally, I still live in the shadow of the dragon, fearing that it will someday return. Like a bad dream, my memories of how it was to live everyday in pain and emotional anguish haunt me. It further saddens me to see so many women still suffering, even in this day and age of supposed medical miracles. Where is the CURE?

I wonder if I will ever be truly free from the encumbrance of this disease? Thanks to a wonderful specialist, I am physically disease-free, and what’s more, I won my 6 year battle over Endometriosis-related infertility, having my miracle child before succumbing to a complete hysterectomy. I beat my Endometriosis!

So why am I still worried about an illness that should be nothing more than just a fleeting memory?

I may be “well” of Endometriosis, but the disease has made a lasting mark on my body – and my soul. The residual post-Endometriosis problems I deal with now are negligible compared to my 15 year battle against stage 4 disease…but they remind me that I am only but one step ahead of Endometriosis at all times. People often ask me why I still frequent the online Endometriosis community spots and why I have dedicated my life’s work to raising awareness and providing education about the disease, even though I am “well.” The truth of the matter is, I feel if I do not continue my efforts, then I discontinue my fight against the disease altogether.

“Post Traumatic Endometriosis Syndrome” or not, I intend to see this battle through to the end, resting only when the disease is eradicated from all of our lives for good. Join me in the war against this enigmatic illness – arm yourselves with knowledge, hope for the future, and the assuredness that our time of victory over Endometriosis will come one day soon.


Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.