14 Endometriosis Surgeries - Any Dietary Suggestions?

My wife has been battling endometriosis for nearly 20 years and has undergone 14 surgeries. She no longer has her ovaries or uterus. Thirteen years ago, she suffered a uterine rupture while she was six months pregnant.

She has not had endometriosis surgery in six years—the longest she has ever gone between procedures. During that time, she developed swelling in her armpits and eventually had two lymph nodes removed. As it was explained to us, the pathology findings suggested early endometriosis-related changes in that tissue.

She later developed trigeminal neuralgia, which caused excruciating facial pain. She described it as feeling like someone was striking her face with an ice pick. For eight months, she was largely confined to bed and relied on medication. Even when the pain subsided, everyday activities could trigger another episode: yawning, speaking, breathing, chewing, or simply stepping outside and feeling the wind on her face.

She eventually underwent CyberKnife treatment, which uses targeted radiation directed at the affected nerve. Her pain went away immediately, but days later, she experienced vision loss associated with swelling. She spent eight days in the hospital and regained some of her vision. She required steroid treatment and another hospital visit. Since then, she has continued taking gabapentin every eight hours.

Now, her endometriosis-related pain has returned. She also has POTS and adrenal insufficiency. Her adrenal glands stopped functioning properly in 2020, and she requires daily cortisol replacement medication. One of our biggest concerns about another surgery is making sure her anesthesiology team understands her adrenal insufficiency and can manage her needs before, during, and after the procedure.

I have told my wife that we need to explore complementary approaches alongside her medical care. However, I also believe she needs to be evaluated for another surgery because she can barely eat, and bowel movements are extremely painful. Her endometriosis has repeatedly involved the area around her intestines, and she has a history of stage IV disease.

We have also noticed a recurring pattern: when she does not take her estrogen injections, the swelling in her armpits decreases and sometimes disappears completely. After an injection, the swelling and other symptoms worsen. She recently stopped taking the injections, but going without estrogen creates other problems. We have wondered whether dietary approaches could help, but we have not found an effective solution for her.

This is an extremely complex case, and I understand that. Her case has been the subject of three studies. She has seen several leading endometriosis specialists, including Dr. Seckin in New York City, Dr. Nezhat at Stanford, and Dr. Sinervo in Atlanta, Georgia.

If you have experienced similar symptoms, particularly armpit swelling associated with estrogen use, or if you also live with endometriosis, POTS, adrenal insufficiency, or trigeminal neuralgia, I would appreciate hearing about your experiences. We are especially interested in what has helped you and how your medical team has approached your care.

Thank you for taking the time to read our story. God bless.