Endo Strong Patient of the Week: Tori

Like many women, Tori got her period at age 13 but didn’t receive an endometriosis diagnosis until she was 23. But, the similarities in her story, compared to those of the average endometriosis patient, ends at diagnosis. Tori’s epic battle with endometriosis, and now endometriosis-related cancer, is a unique tale. One she shares with courage, bravery, and humor. She credits Dr. Seckin for being one of the heroes in the story and she is clearly the heroine, sharing her tale with the hopes of saving the lives of other women.

Tori never had a regular period. She never knew when her period would come or how long it would last. But, when it came, she would have extremely painful cramps and terrible headaches. Eventually, Tori started suffering from chronic fatigue, sleeping up to 18 hours a day. These symptoms continued for many years. Her mother, being into witchcraft and herbal remedies, never took Tori to a medical doctor. Tori did go to the emergency room once when she was 16 for severe pain. Doctors thought they saw cysts on her ovaries and assured her they would go away. Tori would later discover they were actually malignant tumors. She feels that earlier intervention could have made a big difference in her case.

Birth control pills

Tori got married when she was 19 and decided to go on birth control to help with her period pain. After being put on a standard pill, Tori experienced increased irritability and a weight gain of 40 pounds. After six months, she changed gynecologists and tried several other pills, all of which made her life miserable. Her gynecologist thought that she might have pelvic inflammatory disease. He put her on steroids, which ended up helping her a little bit with her chronic fatigue. She also did a sleep study where they diagnosed her with idiopathic hypersomnia. The doctor prescribed Ritalin, which also helped a little bit with her exhaustion.

Other symptoms like severe nausea, pain with intercourse, and chronic yeast infections started to become a part of Tori’s everyday life. Tori had a series of sonograms, an entire blood panel done and had all of her hormones checked. At this point, she had many cysts on her ovaries. But her doctor told her again to ignore it and that she most likely had polycystic ovary syndrome. No one could explain why Tori was feeling as bad as she was. She and her husband started doing research and read about endometriosis. They had a hunch that this was the root of all of her medical issues.

Exploratory laparoscopy

Tori convinced her gynecologist to do an exploratory laparoscopy to see if she had endometriosis. After a three-hour surgery, her gynecologist came out and told Tori that her endometriosis was all over her pelvic cavity, from her diaphragm to her colon, to her liver, and her bladder. Her gynecologist burned what he could, which wasn’t much, and recommended she start the drug Lupron. Tori read about the side effects of Lupron and did not want to take it. Her gynecologist then offered Tori a hysterectomy even though she was only 23. Tori read online that many women who have had a hysterectomy still have pain. She knew that wasn’t the best answer. Tori went to many fertility specialists in the area who had more experience with endometriosis hoping for a different treatment plan, but they all offered those same solutions.

With Tori’s next period, she started getting blood in her stool. She had a colonoscopy and it showed she had deep endometrial implants in her colon that she believed the ablation her gynecologist had done made worse.  Tori and her husband were very concerned and decided to thoroughly research endometriosis excision specialists all over the world. Tori talked to many offices and asked each specialist her list of questions and waited to hear the answers that she believed to be right through her extensive research of the disease. After speaking with Dr. Seckin, she knew she had found the right doctor.

Surgery with Dr. Seckin

Tori was one of the most extensive cases Dr. Seckin and his team has ever seen. They had to remove 7″ of her colon. She had prolific endometriosis in her rectovaginal area, all over her bladder, and through her ureters.  He completely removed her peritoneal lining and she also had endometriosis on her diaphragm. Recovery was tough, but she made it through. During a follow-up call with Dr. Seckin, Tori learned some very difficult and surprising news. Dr. Seckin sent most of the excisions out to pathology to confirm her endometriosis, but they came back as a rare type of cancer. She would have to get a hysterectomy right away.

A cancer diagnosis

Tori was diagnosed with a primary peritoneal low-grade serous borderline carcinoma. Her case was taken over by a New York cancer hospital, where she had a hysterectomy. Later she transferred to a hospital in Houston to continue getting care. Tori has only heard of two or three other cases like hers. Her doctors believe it is absolutely linked to endometriosis. Right now, she has many pre-cancerous cells in her body, but there is no way to detect them because they are so small. This type of cancer is slow-growing and her team in Houston believes that it does not respond to chemotherapy or radiation therapy. Her treatment plan is to have CAT scans every three months. At her hospital in Houston, they have a machine that can detect cancer cells as small as 1 cm in diameter. When cancer is seen, Tori will have it taken out.

Praise to Dr. Seckin

Tori credits Dr. Seckin with saving her life. Not every endometriosis surgeon excises the lesions during surgery. And not every endometriosis surgeon sends the specimen for pathology. Ablation ruins the cells and will never show whether the lesions were endometriosis or something else. Tori believes that if Dr. Seckin hadn’t found her cancer, she would not have survived another five to ten years. Tori doesn’t know what her future holds but is grateful to have the opportunity to share her story so that other women are aware of the devastating effects of endometriosis. She spent many years struggling to receive a diagnosis and have the proper treatment for her disease. She hopes that other women will not have to go through what she did. Early diagnosis and treatment are crucial to having a better chance at a greater quality of life.