Angela comes from a very traditional family. Her parents are both from Italy. Her mother had a hysterectomy when she was 39 due to cervical cancer. Angela first got her period at 9-years-old and from her first period, she was in pain. She didn’t know what a normal period was supposed to be like and she learned to deal with her pain.
Growing up, she was taught that she shouldn’t go to the gynecologist until she was sexually active, which of course shouldn’t be until she was married. At the age of 23 she went to the gynecologist because she missed her period. The gynecologist told her she had a cyst on her ovary and put her on birth control to shrink the cyst. The cyst never shrank. That doctor did Angela’s first exploratory laparoscopy. The doctor found endometriosis but only drained her cyst during the surgery. After surgery, Angela had no idea what was done or not done during the procedure. The doctor put her on Lupron for 6-9 months post-surgery. Then Angela stayed on birth control for 4-5 years. Meanwhile, Angela was diagnosed with IBS and had a lot of pain and constipation. She just thought this pain was part of normal life.
At the age of 29, Angela decided to go off the birth control pill so she and her husband could try to get pregnant. After trying to conceive and not being successful, she and her husband went to see a reproductive endocrinologist. After hearing her story, he thought it best to do an exploratory laparoscopy. The day before her surgery she found out she was pregnant. The surgery was canceled and Angela and her husband were thrilled! Angela had her first child and became pregnant again at age 31 only to miscarry. She became pregnant again with her daughter soon after but had complications which resulted in an emergency c-section. Angela and her husband did not actively prevent having another baby, but she never got pregnant again.
Two years ago, at the age of 37, Angela had extreme lower-back pain on her left side. Her gynecologist saw that she had another big cyst on her ovary. He gave her the choice of going on the birth control pill or dealing with the pain until she was ready to have surgery again. She didn’t want to go on the pill and she was now experiencing extreme pain that was radiating down her leg. She felt so bad she decided to schedule surgery. Her doctor told her that her cyst was so big that he may have to remove her ovary. He also wanted a cancer specialist in the operating room with him. Her surgery ended up being 4.5 hours long and the doctor took out her left ovary. Angela’s doctor told her that he got as much as he could. He told Angela in a vague way that the endometriosis had spread to a few different places. He told her that he didn’t want to ruin her holidays, so he waited to put her on Lupron in January.
Angela felt that when she went on Lupron her life started falling apart. She was always someone who had a ton of energy and now she was having trouble getting out of bed. She also started having complex migraines with a host of other neurological symptoms. She decided she would not take another Lupron injection. But her doctor did not have a Plan B to help her endometriosis pain.
By May of 2012, the pain in Angela’s lower back and leg was excruciating. She called Dr. Seckin’s office and explained her pain and they had her come in for an appointment. Angela was amazed how in the first 5 seconds of examining her he knew that she had adenomyosis, a nodule on her rectum, and a cyst on her right ovary. He felt that Angela’s case was pretty severe and very complicated. Scans showed that Angela had endometriosis on her bowels, including in her rectum and in her colon. Dr. Seckin sent her to meet another surgeon whom he would work with during her surgery. He told her that she should expect a major surgery. Angela thought about her two children at home, now 6- and 9-years-old. She was scared.
She was completely overwhelmed and kept trying to wrap her head around the fact that all her life she was told that endometriosis was not a big deal. Clearly, it was. She was embarrassed telling other people about this major surgery she was going to have. They looked at her like, “Are you serious?” Angela didn’t look sick and endometriosis was known as a minor disease that caused infertility. Yet, Angela was preparing for the biggest surgery of her life. The last words she said to Dr. Seckin were, “Just make sure I wake up.” Angela did wake up: 8 and a half hours later.
Angela had a very extensive surgery with Dr. Seckin and his team. Her uterus was just hanging in her pelvis and had to be removed. Endometriosis was wrapped around her nerves in her left leg. She had a triple bowel resection. She had endometriosis removed in her rectum, in her colon and in her intestines. Dr. Seckin also removed her appendix. Angela was in terrible shape. She had endometriosis in every part of her pelvis.
Angela feels that Dr. Seckin saved her life. She only wishes that she found him sooner. She is still dealing with the physical and emotional effects of having a complete hysterectomy and is trying to find the right hormone therapy to help her feel well. She feels that finding Dr. Seckin sooner could have maybe prevented her from having a hysterectomy. She feels strongly that a precedent should be set that doctors who suspect endometriosis in their patients should have to send them to a trained excision specialist. She feels it is not right that inexperienced gynecologists who operate on endometriosis patients have no accountability when their patients are often left in worse condition.
Angela’s bravery and resolution to fight this disease is one of the many things that make her ENDOSTRONG. She is an advocate for patients and helps many women in her circles find the help they need. This disease may have taken a lot from her physical life, but it has not taken away her strong, fighting spirit. She is grateful to Dr. Seckin and the amazing, compassionate doctors that worked with him that day. She encourages women not to put too much faith in their doctors unless they are well-known endometriosis specialists, and she hopes one day there will be more awareness regarding this terrible disease.