Amy Olson Miller: Living with—and without—uterine fibroids

Amy MillerAmy Olson Miller, Project Manager for the Department of BioHealth Informatics at the School of Informatics and Computing at Indiana University-Purdue University in Indianapolis, shares her insight and experience of living with — and without — uterine fibroids.

There are a lot of things that Amy Miller doesn’t miss since having a hysterectomy for her uterine fibroids in 2015. Starting with her diagnosis at age 27 and continuing for the next 20 years, Amy coped with the symptoms and situations that women who have fibroids are all too familiar with.

 

 

She doesn’t miss:

  • Irregular and extremely heavy periods.
  • Toting a big bag packed with pads wherever she went…just in case.
  • Not going to the gym or yoga classes for fear of an unwelcome surprise.
  • Wearing dark pants, not a swimsuit, while on one of Conde Naste’s top 10 beaches.
  • Being anemic and chronically worn out.
  • Painful intercourse.
  • Constantly having to urinate due to a fibroid-squeezed bladder.
  • Dreading travel because of the potential unavailability of supplies and unpredictable periods.

Worsening symptoms

Like most women with fibroids, she found ways to cope.
Miller’s first diagnosis happened right after she got married – the doctor felt something and said they’d need to monitor it. Over the years, her condition worsened. No more tampons due to the pressure they put on her fibroids and their ineffectiveness with extremely heavy flow. And more hemorrhaging – at work, at home, on vacation.

Like most women with fibroids, she found ways to cope. But in more recent years, the fibroids began growing rapidly. Several years ago her doctor found that her fibroids were wrapped around her bladder. “It was like being pregnant with triplets – I constantly had to go,” she recalls.

At 44 years of age, she decided to have a uterine fibroid embolization (three days recovery) instead of a hysterectomy (six weeks recovery) “I chose the treatment based on the outcome and how long I’d be off of work.”

Amy and Les Miller 1-1Preserving fertility not a concern

“I bring a different perspective than many women regarding treatment, because my husband and I never thought about having children. Preserving fertility was not on my radar.” Her doctor also recommended against a hysterectomy since it could trigger instant menopause, hot flashes and all.

…shortly thereafter the fibroids came back with a vengeance.
Over the next year, Miller enjoyed mild relief from her symptoms, but shortly thereafter the fibroids came back with a vengeance. “It was as if they were saying ’You can’t get away from us!’” They grew quickly and brought with them even more severe symptoms.

Hysterectomy the better option

“I decided to get a hysterectomy, and I think in part, because I was physically fit, I had a quick and uncomplicated recovery. My only regret is that I didn’t have the hysterectomy first! I could have saved the $2,000 deductible for the embolization and applied it to the hysterectomy. Knowing what I know today, I would have gone with the hysterectomy first.”

Amy says that even with her high degree of medical knowledge, due to her work, and her access to excellent medical care, she didn’t know to ask specific questions that could have led to earlier and more effective treatment.  For example: what are the benefits of one procedure over another? What is the percentage of women for whom the recommended procedure fails and requires another procedure? What is the expected outcome? What additional information should I review before the procedure? What side effects may occur after the procedure (such as constipation from pain medications)?

Bring an advocate to doctor appointments

“We also see that there is a disconnect between academic medical centers and the small medical practices. Practitioners are looking at your chart, your history, your desired outcome, and processing it into their sphere of perspective. Here’s where women really need to be asking a lot more questions. And, we need to bring a third party with us to appointments to help us process what is being said.”

Miller says younger women interested in preserving their fertility have to work hard to find a specialist who understands this and will help. “Now there are many other ways to have a child with one’s genetic make-up – but these options can be financially challenging.”

“Uterine fibroids are something that are not talked about. We cope. We adjust. And this compromised quality of life becomes our baseline. People make jokes about periods (Saturday Night Live), but for some of us, it’s a debilitating monthly episode!”

COMPARE-UF helps women

Miller is participating in COMPARE-UF because she hopes the registry, and the awareness around uterine fibroids that COMPARE-UF generates, will help women understand their treatment options. “There may be people in your family or community who are suffering, and COMPARE-UF will provide unbiased information about what treatment options are available.”