Endo Strong Patient of the Week: Tori

Endo Strong Patient of the Week: Tori

Like many women, Tori got her period at age 13, but didn’t get diagnosed with endometriosis until she was 23 -- ten years later. 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 with 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, never knowing when her period would come or how long it would last. But, when her period came, she would have extremely painful cramps and terrible headaches. Eventually, Tori started suffering from chronic fatigue, even 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-years-old 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. Tori feels that earlier intervention could have made a big difference in her case.

Tori got married when she was 19-years-old 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 6 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. She was 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, that she most likely had polycystic ovarian syndrome. No one could explain why Tori’s 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.

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 to 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-years-old. 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 was made worse by the surgical technique ablation done by her gynecologist.  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.

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.

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 2-3 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. 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 1cm. When cancer is seen, Tori will have it taken out.

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 5-10 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 get diagnosed 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.

Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com.  If you are a patient of Dr. Seckin’s and want to share your story please contact Casey at casey@drseckin.com.

 

 

 

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Patient Reviews

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  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…

  • Jason Curry

    My wife had her laparoscopic excision surgery to remove endometriosis with Dr. Seckin on Jan 30, 2014. She doesn't write online reviews so I'm writing this on her behalf. I accompanied her with each office visit she had. The staff--Lucy and Kim, are very friendly, warm and professional. Dr. Seckin was excellent in every capacity. He spent a lot of…

  • Liz Filippelli

    He is an awesome doctor who saved my daughters life from debilitating endometriosis..she knew instantly upon awaking from surgery that she was better..that wad May and no complaints only praises for Dr. Wonderful Seckin!!

  • Karen N

    I was diagnosed with Endometriosis at 19. I saw several Endometriosis "Specialists" since then, had a few laproscopic surgeries to "remove" the endometriosis and continued to be in pain. I had a hysterectomy in 2012 and was told this would stop the pain once and for all. No such luck! Tired of spending days in bed with a heating pad,…

  • Lauren Rodriguez

    I researched and found Dr. Seckin after dealing with years of doctors who couldn't help me or refused to go the extra mile for their patients. I have to say I am truly blessed to have found such a compassionate and talented doctor. He is exquisite with everything he does, and both his team at the office and surgical team…

  • Kellya Vespa

    Dr. Seckin is a very skilled surgeon. There are not many doctors like him that truly understand the effects of endometriosis. I am lucky to have found him. The staff is wonderful too.

  • Meg Connolly

    Dr. Seckin truly LOVES what he does and cares about his patients from the bottom of his heart. My life has already changed in 3 weeks and I couldn’t be more grateful. Should I ever need another operation for endometriosis, Dr. Seckin will be the one to do it. I recommend him to anyone I come across with similar problems…

  • Elisandra O

    Dr. Seckin is an amazing Doctor he is very compassionate, caring and he will be honest with you. He's been my doctor for 19yrs and I am so grateful to have someone taking care of me that knows what he is doing and knows the best way to treat each and every situation. I would definitely recommend him and his…