When Tiffany was 11 years old, she began suffering from extremely long, heavy, and painful periods. She looked to multiple doctors for help over the years but was told her symptoms were normal.
Over 21 years, Tiffany tried to reduce her symptoms with several types of birth control, but their usefulness would fade over time. Working out became difficult due to intense pain that had developed in her upper thighs and pelvic area.
Tiffany continually developed cysts as well. Her OBGYN told her having cysts was not uncommon, even when they ruptured several times between 2016 and 2017. It took a large cyst rupturing while she was on vacation one summer for a nurse to even mention endometriosis.
After some quick research, Tiffany instantly felt relieved realizing there might be a name for the pain she was living with.
“Once someone explained endometriosis to me, it made a big impact on my life,” she said. “Giving a name to something I thought was unknown; it really meant a lot.”
Seeking another opinion, Tiffany searched for a new OBGYN. She was officially diagnosed with endometriosis in 2017 at 31 years old, at a local endometriosis care center.
During the same time period, Tiffany was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), an illness that causes dizziness when standing; Supraventricular Tachycardia (SVT), which is an abnormally fast heartbeat; fibromyalgia; and adenomyosis, the sister disease to endometriosis. It is also highly likely that she has Mast Cell Activation Syndrome (MCAS).
Experts at the local endometriosis care center became part of a team Tiffany relied on for answers. They shared detailed information on how she could manage some of her illnesses, including through excision surgery.
Early September 2017, Tiffany had her first laparoscopic excision surgery at Northside Hospital with Dr. Ken Sinervo of The Center for Endometriosis Care (CEC). During surgery he removed a blood cyst; excised her endometriosis; corrected her misshapen cervix; and removed her appendix, which appeared to have a small malignant tumor.
After the surgery, he diagnosed her with Interstitial Cystitis (IC), also known as Painful Bladder Syndrome.
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Tiffany had her second surgery again at Northside Hospital on October 4, 2019, with Dr. Jeffery Arrington.
“I was highly impressed by the level of attention and care by both the CEC staff and the Northside staff for both surgeries. I have been to a lot of doctors and hospitals and this combination provided me with so much knowledge, ease, and hope for the best quality of care," she said. "They were all so kind and respectful as well, which I think goes a long way for the patient and family.”
The procedure included removal of additional endometriosis, scar tissue and fibroids; a re-correction of her septum; two hernia repairs; and a presacral neurectomy (to lessen the pain associated with adenomyosis). Doctors briefed Tiffany and her husband on the surgery, before and after.
“My husband loved that they gave him a pager and updates after surgery,” Tiffany said. “It’s normal to be nervous when someone goes into surgery, but he was given a full understanding of what was happening as it happened, so he always knew I was getting the best care possible.”
Today, Tiffany regularly attends pelvic floor therapy, finding the therapy incredibly helpful in her illness management particularly after her surgeries. She continues checkup appointments with her doctors, and by the end of 2019, she surpassed 150 medical appointments since January 2018. She also has seen great relief from many of her symptoms by following a Paleo diet, which works well for her.
“My whole life revolves around trying to take care of myself and living with these chronic illnesses. But with the help of my doctors I’ve learned how to do it,” she said. “Management of my illnesses is key to my finding a way to live a more normal life, and the right health team can make such a difference in that journey.”
In her free time, Tiffany runs an Instagram account called @ChronicallyPaleoStrong. She uses her account to connect with others trying to manage their endometriosis as well as other chronic illnesses.
“I try to tell others that it isn’t normal to have painful periods or continual cysts. If you are experiencing pain and your OBGYN is saying its normal, you should get a second opinion,” Tiffany said. “Any time something doesn’t feel right, trust your instincts. You know your body best.”
