The Gains of an Endo Athlete

25 October 2018 – Patient Stories

“After 20+ years of fighting, you kind of don’t get your hopes high for the next specialist.”

Endometriosis Patient

Brandi Bacon

Brandi, a 38-year-old endometriosis survivor, keeping in touch with the international endo community via Snapchat.

The Pain Was A Heavy Weight To Bear

Brandi, a previous high school gymnast, cheerleader, weight lifter, and mother of one, spent her entire academic and professional career in unmanageable pelvic pain. Severely anemic and a victim of both ovarian cysts and fibroids during her high school years, the doctors were at a loss as to what to do for her. Brandi’s obstetrician (OB) began treating her for the anemia and ovarian cysts in 1999, however, she wanted to dig a little deeper. She performed the first of Brandi’s 15 laparoscopic surgeries, and determined that she, in fact, suffered from endometriosis.

“That was the first time I heard the word ‘Endo.’ The OB explained, ‘It is a growth of the lining that it growing outside of the uterus and bleeding. Some women get it — it’s nothing to worry about.’”

Although this was something that she was told not to worry about, Brandi knew that something wasn’t right as the pain began to intensify, causing numerous missed school days, and the need to be excused in order to change her clothes due to excessive bleeding.

Between the years 1999 and 2006, she was shuffled to and from various specialists [allergists, proctologists, endocrinologists] who diagnosed her with irritable bowel syndrome, potential Crohn’s disease, colitis, and gastritis. At one point, they wanted her to seek psychiatric help.

“They wanted me to see a counselor, because they thought it was stress. They thought I was starving myself.”

The Doctors Maintained Repetitions of Ignorance

In 2007, the severity of Brandi’s condition worsened — inciting the need for a 6th laparoscopic procedure. It was discovered then, that the endometriosis had eaten its way into her bowel.
“They took the end off of the bowel, removed my uterus, and cleaned everything up in there. I had about a year of remission, to where I felt ok, and then the problems came back 10 times worse. After the surgery, I went back to my OB and told him that the pain had returned. He told me, ‘Look, you have endo. There’s nothing that I can do. You’re just going to have to live with it.’”

After receiving this devastating news, Brandi was referred to another OB who was also a pain specialist — this physician had the reputation of dispensing heavy medications to combat pain instead of addressing the condition itself. This methodology of treatment did not coincide with her convictions based on the personal experience of suicide impacting her intimate family nucleus.

“I was very against going on any type of pain management to mask the disease, because that’s what it was — masking it.”

At the end of her rope, Brandi attempted to make an appointment with this new specialist, but he refused to see her because her condition was, “all in your head.” It was during this time, that what was left of her health began to wither away.

“I went from 130 pounds to about 96 pounds. A lot of people couldn’t understand. I was literally at the point where I was like, if someone doesn’t help me, I am going to die.”

After several additional surgeries, nearly losing her house because of medical bills that the insurance company would not cover, and doing her best to cope with endo, she sought both guidance and sanity from women like herself by joining an online endometriosis forum. Through this forum, she met Tara Hilton, Founder of The Yellow Cape — a non-profit, endometriosis outreach organization. Tara told her, “You need to contact RAD,” and so she did.

The Duration Of Medical Failures Was Finally Over

Since the first day she walked through the doors, Brandi experienced nothing but warmth, positivity, and straightforwardness from the Endometriosis & Pelvic Pain Center’s medical and administrative staff.
“All the girls in there, especially when you are dealing with nurses and staff that are dealing with the same thing you are, are just breaths of fresh air. They understand completely.”

Her first consultation with Dr. McGuirk was a radical shift in the normalcy that she had become accustomed to for 20+ years. Due to the lack of professionalism, genuine care, and authentic concern from the medical community up until that point, Brandi was unsure if she could trust Dr. McGuirk’s word that she could help set her feet on the path toward a better, pain-free life.

“Dr. McGuirk said to me, ‘You don’t believe me.’ I said, ‘No. I’ve had 13 to 14 other doctors say that they’re going to help, and they have all turned around and said, ‘Well, this is beyond my control.’ Dr. McGuirk was very to the point and she was more knowledgeable than any other physician I ever talked to. We are the ones that know the side effects, what could help, what causes triggers and flares. We become our own advocates. Dr. McGuirk understood my disease better than any other doctor.”

Because of the extensive internal organ damage that the invasive endometriosis had inflicted on her body, Dr. McGuirk collaborated with a team of oncology specialists in order to strategically target the culprit and assist in bringing about remission.

“‘There is no cure, but we are going to help you — we’re going to take the pain away!’ Having that was like having a glimmer of hope, that maybe this one’s going to be able to save me. That was the biggest thing, just knowing that I finally had hope and that there is a doctor around here that can help.”
Since her initial visit and the start of her long-term treatment plan, Brandi has improved in leaps and bounds. A well-organized plan assembled by a physician that has good listening skills, determination, and compassion, in addition to a dedicated patient, can accomplish an immense amount toward healing.

“We did the Whole 30 and she understood that certain things for certain people work, but for others, they don’t. I found taking all of the hormones out of the meat and the food, helped with my symptoms — the hormones in the food were causing the flares.”

Regaining Her Power

Just recently, Brandi celebrated 1-year of being pain-free in remission since her first laparoscopic surgery with Dr. McGuirk, and this is what she had to say.
“For the first time ever, that crippling endo pain is gone, and I still walk on pins and needles because I’m waiting for that to hit any day. You’re always used to being down and being sick — not being able to do this and that. 22 years of being in pain and through this treatment and that treatment, and you’re not in pain. You have to rewire your brain — it’s a big adjustment.”
Having a daughter of her own that has the potential of experiencing the intensity of this disease firsthand, has inspired Brandi’s passionate voicing of the condition, its symptoms, the tools utilized for remission, and the importance of having the right physicians coaching you through. Because of her experience, she has been able to shed light on this often unrecognized and ignorable problem — particularly with young girls in high school. When asked if she would like to share any advice or thoughts for fellow EndoSisters young and mature, Brandi replied,

“Keep your medical records. Keep your medical records with you. They can’t say that nothing is wrong when it’s in print. Don’t give up with insurance companies. I actually fought my insurance company tooth and nail — this opened the door for the insurance company to give me a personal liaison, because of the seriousness of the disease. Women are taking their lives in the endo community, because they feel that there is no other way [out]. There are resources out there to help.”

Enjoying her newfound freedom in a pain-free body
Brandi pictured with fellow, teenage EndoSister, Morgan, at one of The Yellow Cape’s outreach events in March of 2018.
Reunited with Dr. McGuirk and several other survivors in the community.

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