Patti's Story...

My period started when I was 11. By the age of 14 I was put on the birth control pill. My high school years, besides going to classes, I spent a lot of time in the nurse’s office, writhing in pain.

Horrendous, heavy, painful periods was my life. Chronic pain was my life and everything I did needed to be scheduled around my period; otherwise, I would be at home in bed with a hot water bottle and OTC pain medication. That was my normal.

I had been to the ER several times, only to be told I had a “grumbling appendix”. It wasn’t until 1987 when my appendix burst, and I received a diagnosis of Stage 4 Endometriosis. Annual surgery began in 1995 and in 2001 I had a hysterectomy, leaving the left ovary and cervix behind. According to the surgeon, after a gruelling 7+hr surgery, he decided not to remove the left ovary as it was adhered to the Sigmoid Colon and he felt removal would leave me in worse condition, nor was he prepared to do a bowel resection.

For the next 6 years I suffered with chronic left side abdominal pain and ovarian cysts. I was on a lot of pain medications from T3’s to Fentanyl and Methadone. Numerous blood tests, CT Scans, X-rays, and MRI’s were completed, all findings were “unremarkable”, but I was still in a lot of pain.

In 2007 I underwent another surgery to remove the ovary adhered to the Sigmoid Colon because there was an actively growing cyst. The surgeon had me watch a video on Colostomy in the event I needed a bowel resection. The ovary was scooped from the colon; however, ovarian tissue was left behind because the surgeon told me they were not prepared to do a bowel resection... even though they had me watch a video about Colostomy. I was pain free for a year, until one day I felt a familiar pain. I saw my dr., estrogen levels were checked via blood work and her worst thoughts were confirmed, Endometriosis was STILL active. Over the next 3 months I received Lupron injections, more blood work, and still no change. I was then told to investigate Pain Management because there was nothing more she could do for me. More surgery was not offered.

In 2016, as a patient of a Pain Clinic in Toronto, a gynecologist operated on me laparoscopically, only to immediately back out, siting “the adhesions were too dense to view the pelvis”.

In 2017 a surgeon from a local city hospital operated on me, this time via laparotomy/mid-line incision to remove the ovarian remnant. She couldn’t find it. While opening my already present mid-line incision, the bowel was cut full thickness. A general surgeon was called in to repair the bowel, as well as a urologist, who was to insert stents through both ureters; however, a stent was unable to go through the right ureter, and a special CT Scan was completed 2wks post-op in order to determine what was going on with the ureter. A “kink” was noted, most likely due to adhesions pulling it, but that there was nothing to worry about. While a lot of abdominal adhesions were removed, within a month of that surgery, my left side pain was back and radiating around towards my spine.

January 2023 I had the pleasure of meeting an Endo Specialist in Hamilton Ontario, he came highly recommended. It took a year and a half to get the initial phone consultation and another 6 months to actually meet him and have an ultrasound. The ultrasound confirmed there was an ovarian remnant (clear as day was what he said) and to my surprise, DIE was present on the LUSL. However, he didn’t think this was the cause of my pain, and to try Yoga, and to stop letting thoughts of Endo take up so much real estate in my head. My pain doctor, also in Hamilton, sent me for an MRI to confirm Endo was present, and sure enough DIE was seen. The MRI results were sent to him and he had one of his students call me and said: “his opinion hadn’t changed” and I was discharged from his clinic.

The Gaslighting I received reminded me of how I was treated in the 80’s, by doctors who really didn’t know too much about the disease. I felt beyond let down, a feeling I have felt many times throughout my Endo Journey.

There is way too much misinformation given to young women about their periods. They are told that it’s normal to have cramps that make you faint, vomit and/or miss school; or that you need to be in the bathroom several times a day with explosive diarrhea. At the age of 19 I was told “that getting pregnant cures endo.”

The sad thing is that this disease is still being treated the same way 40 years later. The only difference is a new name for an old medication that does nothing but give women a lot of horrible side effects, or you may be offered the same injection given to men with Prostate Cancer … which is NOT meant for long term use.

Some people call it “doctor shopping”, I call it “being my own Advocate” because that’s what I needed to do in order to find effective treatments… I’m still “

shopping”;