Second-Generation Endometriosis Patient Shares Her Story
As a child, Lauren can remember vividly her mom being sick with endometriosis. She can remember her surgery, her fatigue, and her pain. Lauren’s mom explained a little bit about endometriosis to her and showed her her scar from surgery. Lauren is an endometriosis patient who had known about the disease her whole life.
Lauren can actually remember suffering from the endometriosis symptom of leg pain even before she got her period. Her pediatrician assured her that is was growing pains and that she needed to be more active. Lauren didn’t understand this advice because as a tomboy, she was always outside swimming and playing. When her period came at age 13, it was uncomfortable from the start and she felt extremely nauseous. She would go to the nurse at school who would tell Lauren eating would make her feel better. But she felt too sick to eat. Even with her family history of endometriosis, no one linked Lauren’s symptoms with the disease.
Going on birth control
Lauren went on birth control right after high school. She stayed on it until she was 30. Even with this hormonal treatment, Lauren suffered from even more endometriosis symptoms. In her 20s, she had significant episodes of diarrhea and abdominal cramping. After tests showed nothing, her doctor diagnosed her with IBS. She also had frequent bladder and kidney infections. Again, her doctors did not see anything on her scans and told her that she should drink more water.
At age 30, Lauren went off the birth control pill to try to conceive. And that is when she started suffering even more. By this time, she had adopted a healthier lifestyle, eating better and exercising. Yet, she still was feeling terrible. Her leg pain was so severe that now any sort of extended walking hurt her legs and her pelvis. She was missing work during her period because she couldn’t get out of bed. She went to her doctor and talked about her symptoms and her mom’s history of endometriosis, and the doctor told her that all of what she was experiencing was normal and pushed to put her on prenatal vitamins. A little voice inside Lauren said:
“There is something wrong here.”
The breaking point
The breaking point for Lauren was when she was hosting a dinner party and abruptly felt very ill. She ran to the bathroom and started vomiting from the pain and couldn’t get off the bathroom floor. Her guests had to leave and she and her husband talked about getting the help she needed. She went back to her gynecologist who told her that she couldn’t be helped there and had to see a reproductive endocrinologist to start IVF.
Lauren left that doctor’s practice and sought out the help of a “specialist” who told her to go back on birth control pills. After being on them a few months without relief, Lauren went back to the specialist who referred her to another surgical specialist. This specialist wanted her on Lupron. Lauren fought hard for the surgical diagnosis she felt she needed. The surgeon went in and found endometriosis everywhere. He lasered what he could, but left much of it untouched. Upon waking, the doctor explained to Lauren that Lupron was her only option and the nurse came in and injected her with it while she was still groggy from surgery. What followed were six unpleasant months of recovering and dealing with the side effects of Lupron, which included memory loss, medical menopause, and joint pain.
Finding Dr. Seckin
Lauren stopped Lupron and felt worse than ever. She was in a bad place emotionally. She just got promoted at work, but feared she couldn’t even tolerate the car ride to get to work every day because she was in so much pain. Lauren felt depressed. She had fought so hard with her surgeon to have her last surgery, yet nothing changed. She was out of hope and was in utter despair. But she knew she needed more help. She researched endometriosis specialists and came across Dr. Seckin and his work with Padma Lakshmi. She researched excision surgery and it seemed logical to her that in order to feel better, the disease had to be cut out of her. She called the office and had an appointment with Dr. Seckin two weeks later.
Upon hearing her story, Dr. Seckin felt very bad about how her other doctors treated her. After hearing her symptoms and doing her physical exams, Dr. Seckin knew that Lauren was very sick. Lauren was so overwhelmed that someone finally believed her. She was also shocked to hear that so many of her symptoms were endometriosis-related, including her lifelong excruciating leg pain. Lauren cried all the way home not believing that all this time she was searching for answers and in one visit, Dr. Seckin was able to give them to her. Noticing how upset Lauren was leaving the office, Dr. Seckin made sure to call Lauren that night to check in with her. He said to her:
“We have to get you better.”
It was during Hurricane Sandy that Lauren had her surgery. Through the chaos and the devastation that was happening all around her in New Jersey, Lauren hoped that she would still be able to have surgery. She did her pre-op bowel prep in the dark because she had no power. Lauren made it to the hospital and had her operation. She can vividly remember feeling so much better immediately after waking up from surgery. Dr. Seckin held her hand and said to her:
“I don’t know how you lived like that.”
Her leg pain which had haunted her for most of her life was gone.
Dr. Seckin and his team ended up removing a lot of endometriosis from her pelvis and also from her ilioinguinal nerve. He reconstructed her ovary and removed the adhesions between the uterus and her bowel. She also had obstructed kidneys and had to have endometriosis removed from her ureters. Her cul-de-sac was completely obliterated and her peritoneal wall had to be stripped down. Lauren said she felt like a phoenix being reborn after her surgery with Dr. Seckin. Her life completely changed that day and a year and a half after her surgery, she still feels 95% better.
It took Lauren a long time to process how sick she was and the harm that endometriosis is capable of causing. She has found physical healing through her surgery with Dr. Seckin but also has found emotional healing, connecting with other endometriosis patients.
Lauren is now on the board of the non-profit Endo Warriors and leads their New Jersey support group. She has found empowerment and support in speaking with other endometriosis patients. She feels that her story can help others. Before she met Dr. Seckin, she had lost all hope, she now likes to bring that sense of hope to others who are struggling. She urges women to trust their bodies and remember that pain is not normal in any way. She stresses that women need to educate themselves and listen to their instincts.
“Never let anyone tell you what to do with your body,” she says.