Tamara apologized for being a little late to our interview. She had been enjoying the nice weather and ended up taking a seven-mile walk instead of the shorter one she planned. Tamara loves to walk and be active. She spent a lot of her early life being very active in sports. But for over a decade, Tamara could not be active due to the excruciating pain. This is her story and how meeting Dr. Seckin changed her life.
The early years
Tamara got her period at the early age of 11. Her period was unreliable and she would often skip periods. Her mother brought her to the doctor who assured them both that this was normal for an active girl.
By the age of 18, Tamara’s period cramping was very painful, as was intercourse. She also experienced urgency with urination. Tamara had difficulty staying awake and would sometimes even have to pull over on the side of the road to take power naps when she drove. Tamara also had frequent yeast infections. One doctor misdiagnosed her with an STD.
At the age of 19, Tamara had severe pain on her right side. An ultrasound showed that her fallopian tube was swollen. The doctor simply gave her antibiotics and sent her on her way.
A few years later, she was still in incredible amounts of pain. Her mom told her,
“You just have to live with it.”
“I refuse to live like this. This is not normal.”
But doctor after doctor, test after test, Tamara came no closer to an explanation for her diminishing quality of life. Some of them even told Tamara it was in her head.
A diagnosis of endometriosis
She finally found a gynecologist who knew why she was in so much pain. She told Tamara she suspected that she had endometriosis and gave her a pamphlet on endometriosis to review. Tamara cried as she read it. She had such relief that she finally found a doctor who could figure out all of her symptoms. But at the same time, she was completely overwhelmed by the diagnosis and worried about her future fertility.
Tamara put her all of her faith in this gynecologist. She scheduled surgery with her a week later, and the doctor did indeed find endometriosis. She ablated what she could, but found an endometriosis-related blockage in her left ureter and endometriosis on her bladder. But she wasn’t skilled enough to remove it. So, she just left it in place. Instead of referring Tamara to a surgeon who could completely remove the endometriosis, she started Tamara down a 10-year path of hormonal treatment.
Tamara was put on Lupron immediately after surgery. The side effects of the medicine were ghastly and Tamara decided to end the treatment early, much to her doctor’s dismay. They tried various hormonal treatments such as the patch, the pill, the Depo-Provera shot and the NuvaRing.
The combination of the hormones with Tamara’s endometriosis started making her feel very sick. Her immune system started failing. Tamara was constantly battling allergies, sinus infections, and her asthma started getting worse. She felt terribly emotional. The worst part was that despite taking all of these medications and living with their side effects, she still had pelvic pain. At the age of 26, Tamara had a second surgery with her doctor and her doctor said she saw no endometriosis.
The side effects of hormone treatments
By the time Tamara was 30, she was really overwhelmed by the effects of her disease and the medications. She had lost a significant amount of bone density from the hormones. Moreover, she was taking other medications for her asthma, her headaches, and her allergies. She sometimes would walk with a cane she was in so much pain. She also started having thyroid-related issues.
Tamara was too weak and in too much pain to be active. She came to the conclusions that not only were her medications not working but they were also actually making her life worse. She was not able to fully live her life and that was unacceptable. Against her gynecologist’s advice, she stopped all hormone treatment.
Within six months of stopping her hormone treatments, Tamara’s asthma, allergies, and sinuses felt better. She felt clearheaded again. Unfortunately, she was also in a tremendous amount of pain.
Finding Dr. Seckin
She started researching endometriosis specialists and came across Dr. Seckin. She at first was dubious that a male doctor could take her pain seriously, after seeing so many doctors who had dismissed her. She went to see Dr. Seckin at the Endometriosis Foundation of America’s Patient Conference. After listening to him speak, she was convinced that he was the only one who could help her. She was in such dismay listening to the experts at the conference speak about the long-term benefits of excision surgery verse the only temporary benefits from hormonal treatments. For 12 years she had trusted her doctor, as she was switching her from hormone to hormone to try and relieve her pain. She felt betrayed. She couldn’t believe that her doctor didn’t keep up with the latest and greatest ways to treat endometriosis. Tamara was angry.
On March 26, 2013, Tamara had her first appointment with Dr. Seckin. One week later she had surgery with him. During the last surgery that her gynecologist performed, she found no evidence of endometriosis. Tamara was worried that Dr. Seckin would have the same findings. He did not. Dr. Seckin found endometriosis on her appendix, which was causing her severe pain every month. He also found endometriosis on her diaphragm and throughout the rest of her pelvic cavity. Tamara went to work a week after her surgery but otherwise took it easy for the rest of the month. Since her surgery, she has stopped taking all medications and has a normal period.
Importance of advocacy
Tamara is passionate about sharing her story so that no one has to suffer all of those years like she did. She urges all women to research endometriosis and challenge their doctors. She appreciates many qualities about Dr. Seckin. She felt that he was the first doctor that didn’t just want to treat her, but he wanted to fix her and give her the best quality of life in the long term. She also appreciated his willingness to confer with other colleagues on her case and be a part of a medical team to best treat her. Tamara is happy to be active and medication-free and is passionate about helping other endometriosis patients do the same!