Endometriosis Myths I Wish Were True

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Endometriosis myths hurt women as much as the condition itself. They also cause psychological pain when believed by friends and family.

If we are ever to reduce the damage these rumors cause we must speak up and share the truth.

Here are three misconceptions and why I wish they were true.

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Endometriosis Myth Number One:
It only affects the uterus.

If this myth were true, my pain would have ended with my hysterectomy (botched or not). The truth is that in addition to the uterus and ovaries, endometriosis can also be found on the bladder, bowels, and in rare cases even lungs.

Out of all endometriosis myths, this one has harmed my body more than any other. When abdominal pain returned after my hysterectomy, I spent two years calling every gynecological and gastrointestinal surgeon from my insurance provider’s directory. Gynecologists refused to see or address my pain because they said that without a uterus or ovaries, it was no longer a gynecological issue. Gastrointestinal surgeon’s excuse was that they didn’t deal with endometriosis!!! I finally found a women’s health surgeon not afraid to tackle my case, but it took TWO years!

Myth Two:
Painful periods are the only symptoms.

Most people believe that endometriosis pain and symptoms are centered around painful periods. While painful periods are common, they aren’t the only symptoms.

Symptoms of endometriosis include but are not limited to:

• Intense menstrual cramps
• Heavy periods
• Spotting or bleeding between periods
• Pain during and/or after sex
• Intestinal and lower abdominal pain
• Painful bowel movements or urination
• Bloating
• Digestive problems
• Nausea
• Diarrhea
• Constipation
• Fatigue
• Tearing and ripping of adhesions from internal organs and abdominal wall
• Pulling and twisting of bladder and bowels

If this myth were true, my pain would have ended after my hysterectomy. There are some people who, even after reading that list, do not understand how debilitating these symptoms can be. Personally, it is the tearing, ripping, bloating, pulling, twisting, nausea, and fatigue that has made it impossible to stand or walk for more than 5 minutes without passing out.

Other ways this myth misleads people is that it suggests that it’s a once a month problem and only for those with a uterus. My flares vary from a few days, weeks, and months. Until this past year, the longest I have had daily pain from an endo flare was 6 months. My current flare began in November of 2019 and has yet to end. I have had a few lower pain days and weeks, but I am still waiting for a reprieve.

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Endometriosis Myth Three:
A hysterectomy will cure it.

The truth is that THERE IS NO CURE FOR ENDOMETRIOSIS!

While there is no cure, there are some treatments that MAY alleviate pain and symptoms. A few of those include but are not limited to the following.

• Pain relievers such as NSAIDs, Ibuprofen, opioids, and CBD/cannabis.
• Hormone therapy in the form of birth control pills, progestin therapy, and gonadotropin-releasing hormone (GnRH) agonists. GnRH agonists.
• Surgery such as ablation or a hysterectomy.

PEMF therapy may not reduce my endometriosis pain, but it does significantly reduce the pain and symptoms I experience from fibromyalgia and psoriatic arthritis. My endo pain is bad enough without flare-ups from my other chronic illnesses.

There are no guarantees of endometriosis pain relief from any of these treatments. What helps one woman may do nothing for another. While dietary changes may help relieve bloating and calm digestive issues, they will NOT cure endometriosis.

What helps to reduce the pain I experience from my severe endometriosis flares is rest, sitting in a reclined position or lying down, application of heat where I feel cysts, cannabis (I dry vape and make my own edibles), eating small and soft meals, and rubbing a magnesium-rich lotion on my belly. Depending on the severity of the flare, a wheelchair may be required for outings. While most likely not the norm, exercise, and movement that utilizes my abdominal muscles increase the ripping from my abdominal sidewall and internal organs. Note that my case is rare and severe.

Final Thoughts on Endometriosis Myths

I share this endometriosis information and my endo experience for two reasons. The first being that it is my desire to share the information I wish I would have had BEFORE my diagnosis. Why before? Because I would have known to look for a surgeon who specialized in endometriosis instead of allowing my obviously inexperienced gynecologist to perform my surgeries.

The second is to let you and others know that you are not alone. That yes, a 51-year-old woman who has undergone a full hysterectomy still suffers from this wretched and debilitating condition. To remind all women that the pain is not in their heads, they are not to blame, and they are not too young or old to have it.

Which endometriosis myths have hindered your care?

Endometriosis Resources for Women of All Ages

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Sources:
WebMD
U.S. National Library of Medicine
Cleveland Clinic