PaSean is a seeker of healing and an advocate for women with uterine fibroids. Her journey began in her early 30s when she received her first diagnosis of uterine fibroids, which, because at the time they were small, her doctor recommended the “watch and wait” method.
This struck PaSean as odd, since she was aware that the fibroids would likely grow. “Whatever was causing them to happen wasn’t going to disappear just because we watched and waited,” she recalls thinking.
This news was the launch pad for PaSean’s quest to find better options. She went to several doctors – many gave her the same prognosis. So she tried numerous holistic methods, including acupuncture, Chinese herbs, African herbs, fasting and adhering to a strict vegan diet. Her symptoms improved, but her fibroids remained.
Four years later PaSean was referred to a doctor who was known to treat fibroids while preserving the uterus. The doctor said PaSean was a good candidate for this procedure, a myomectomy, and so she decided to have it.
Hysterectomy as default treatment…no more
While PaSean was recovering from the procedure, her husband and sister stayed in the waiting room with family members of other patients in or recovering from surgery. They saw a doctor come into the room to tell the family of a 25-year-old woman that they had to give her a hysterectomy. And although PaSean’s procedure worked well for about nine years, the news of this young woman’s hysterectomy, together with her experience of being told early on that she need a hysterectomy, ignited a passion in PaSean to help women become their own advocates.
“We began interviewing women in their 20s, 30s and 40s – and most of them have been told the only option is a hysterectomy. Women need to know that treatment recommendations depend on the doctor’s experience and expertise. The doctors will recommend what they are good at.”
This experience gave PaSean a new mission
PaSean says this experience shaped her life and gave her a new mission. “Not a day goes by that I don’t talk about fibroids. I receive phone calls from women about the documentary and they want to tell me their story and ask questions. Between auditions, I spend my time talking to women and reassuring them.”
When fibroids are removed, the tiny fibroid kernels are sometimes too small to find. “And these little ones will eventually grow because the cause – the source that feeds the fibroids — is still there,” PaSean notes. Her fibroids returned, and she had her first myomectomy that removed 13 fibroids ranging from the size of a pea to a cantaloupe. “I am a little person and I looked like a lollipop!”
Six months later PaSean went in for her post-myomectomy check up. Her doctor discovered that she had missed several fibroids, so PaSean had a hysteroscopic myomectomy. She was surprised to begin experiencing hot flashes less than a year afterwards. She realized that she had gone into early menopause, so she started Hormone Replacement Therapy to help manage symptoms and mood swings. Suddenly, she began experiencing depression and severe hot flashes. Her doctor discovered that she also had hypothyroidism – a condition not uncommon to women with uterine fibroids.
Discovering cause of fibroids crucial
“My interest now is not so much about how to treat fibroids, but about discovering the cause of them. My wish for women is to feel empowered to do their own research and find out what is the best treatment option for them. A lot of women are raised to believe that they shouldn’t question a doctor. Women need to be empowered to do research, ask questions, and decide if they want to get additional opinions.”
PaSean participates on the COMPARE-UF Stakeholders Advisory Group. She is hopeful that over time, the registry will provide evidence of the effects of various medical uterine fibroid treatments that exist today that will help women in the future decide which treatment option is the best fit for them. She also personally advocates for complementary / integrative treatments for symptom management and to slow fibroid growth.
“The treatment options today are okay…but I feel they aren’t sufficient because women usually end up with a recurrence — they aren’t cured unless they go into menopause. I encourage women to participate in the COMPARE-UF registry so that in the future, we can have the data needed to help our sisters and daughters and nieces and neighbors understand that they don’t have to take one treatment option as the only option. They will have a lot more valuable information about all their options in treating uterine fibroids.”