Misdiagnosis: Like many women, Melissa had always dismissed the discomfort as “her normal”
That normal maintained itself up until two years ago, when three days of tremendous back pain were followed by another three days of completely debilitating agony, leaving her completely incapacitated. On the fourth day, she woke up with the pain entirely gone.
She turned to her gynecologist immediately.
The initial visit revealed fibroids, most under 5 cm in diameter, and only one measuring somewhat larger. Melissa had heard about fibroids because her mother had them. In fact, ruptured fibroids had caused her mother to miscarry a number of pregnancies. In the majority of cases, fibroids are asymptomatic and it is therefore recommended to wait and see, prior to treatment.
owever, when Melissa’s doctor recommended that Melissa ignore them, she couldn’t have agreed less and pursued treatment.
The doctor prescribed the mini-pill to minimize heavy bleeding, but when her continuously heavy bleeding then occurred not only during her period, but also between periods in addition, she abandoned the attempt after two months.
Proactive Treatment and knowledge: Melissa learned that it is both her right and obligation to educate herself about fibroids
Melissa was both alarmed and scared, so she continued to hunt for another doctor. She turned where many of us turn when we’re frightened and nervous. She went home.
Back home in Italy, Gynecologist Number Twotook the time to show Melissa the fibroids on ultrasound and explain the myriad of symptoms they could be causing. After years of gastrointestinal difficulties, Melissa suddenly understood that even these symptoms were likely being caused by her fibroids. He explained that her need for surgery was borderline, but that if they caused a strong decline in her quality of life, surgery was certainly a legitimate option.
Treatment options: Melissa stepped up her search for a viable solution
Gynecologist Number Three came onto the scene following Melissa’s move to Belgium and the mandated waiting period for medical coverage. This new doctor spent time feeling around, again with help of ultrasound equipment, to pinpoint exactly where it hurt Melissa most. She listened and came up with a viable plan of treatment for Melissa, who followed the instructions and began taking a combined pill (more hormones than the mini-pill) to ease bleeding. The gynecologist also referred her immediately to a local surgeon for consultation.
Had she been closer to middle age, the surgeon explained, surgery wouldn’t even be a debate; they would have gone ahead with it without question. However, Melissa is in her twenties and has one son. Even a myomectomy leaves scar tissue, and she’s not sure she wants to take the chance on potentially damaging her uterus. The surgeon warned against it.
He walked Melissa through her specific health scenario. Her fibroids are on the outside of her uterus and within the uterine wall, which potentially could not interfere with pregnancy at all. Thanks to the combination pill, Melissa had just experienced a glorious, symptom-free two months, but she had to stop taking the pills due to the dangerously elevated blood pressure it caused her. Two steps forward, one step back.
The surgeon left the ball in her court.
Fertility: These issues were the doctors’ main concern, but were they Melissa’s main concern?
Then there was that same, nagging question Melissa was asked by every single doctor with whom she consulted. “When do you plan to have children?” Over and over, and in her twenties! She wondered, was this amount of pressure really mandatory toward pinpointing effective treatment?
Melissa assumed that it might be part of the story, but how fair (or even accurate) is it to ask for a full family planning map from someone this age? Melissa flabbergasted. As far as she was concerned, babies were a question for the future, but this hurt.
The options and potential consequences still overwhelm Melissa
Melissa hears that embolization may be a better solution for her, but it isn’t performed in Belgium. Also, this procedure is contraindicated if a future pregnancy is potentially desirable. IUD? More pills? The options are dizzying and confusing, as her distressing symptoms continue in full force. None of the options seems to be a clearly-cut right choice. Even with surgery, Melissa knows that fibroids often grow back, like they did for her mother.
She’s not fine, but now Melissa knows how to hunt down the information she needs, advocate for herself, identify compatible doctors, and line up the treatment that will be best for her… as soon as she figures out what that is, exactly.
Here at Women Talking Fibroids, we enthusiastically applaud Melissa for taking charge of her health, and encourage our entire community to turn to their doctors to do the same.