Living with Severe Fibroids

I am writing this article to raise awareness.

Fibroids are extremely common. Up to 70 percent of women will develop them in their lifetimes. These benign tumors of the uterus can range from minor annoyance to severely debilitating.

Over the past 18 months, fibroids have landed me in the ER twice. I have had one surgical procedure (a hysteroscopy) and tried numerous hormone treatments, supplements, and homeopathic remedies with limited success.

Each month I lose the equivalent of two donations of blood — that’s four times the rate considered to be safe by the Red Cross. But the never-ending period isn’t the worst part. The hardest part is fatigue, from anemia. It can take days to recover from exercise or travel. Left to my own devices, I sleep about12 hours a day.

I was first diagnosed with fibroids in 2016, shortly before I moved to Portland. These are the things I wish somebody had told me.

• If you take iron pills with your morning coffee, they will have no effect. As difficult as it was to wait an hour before having my first caffeine infusion of the day, the difference was night and day.
• If you eat a vegan diet, make sure you’re taking Vitamin C when you eat iron-rich foods. Ditto for the actual supplements. Tofu, chickpeas, red beans, and greens are all great sources of iron, but the body needs Vitamin C to fully metabolize these.
• Anemia does more than make you tired. It can cause bruising, scabbing, irregular heartbeat, dizziness, and hair loss. I experienced all of these over a matter of weeks in Spring 2021. It was scary.
• Just ginger. I’ve tried a bunch of over-the-counter remedies, and ginger pills (1000 mg twice daily) produced the most immediate and striking effects. Clinical research supports these results.
• Cutting out alcohol seems to help. While I haven’t seen this in the scientific literature, I found that when I avoided alcohol the symptoms of the fibroids were much less. Portland is a beer drinker’s paradise so this was kind of a bummer, but based on my personal experience it had an effect.
• Not all hormones work the same. Depo Provera was horrible for me. It turned my brain to fog. I was an emotional, mushy-head wreck for the two months that I was taking it. Progestin doesn’t have the same side effects, and I feel like myself while I’m taking it.
• Ditto for IUD’s. Tried one. Didn’t like it. Won’t be doing that again.
• Hysterectomy does not mean losing your ovaries. Once upon a time, doctors routinely took out the ovaries of women in their 30s, 40s, and 50s at the same time as they removed the uterus, to remove any possible risk of ovarian cancer. Imagine a telling a man in his 40s you needed to remove both his testicles… “just in case” he later developed testicular cancer! Ummm, I don’t think you would get many takers. Nowadays, unless doctors find evidence of cancer, they typically leave the ovaries intact — a major plus, since the ovaries produce both estrogen and testosterone, which help keep the body feeling young in addition to their role in reproductive health.
• Anemia interferes with bone formation. Last May I noticed I was getting a pain in one foot whenever I went running. I tried out different shoes and tried to change up my workout schedule. Nothing helped. Over time, the pain increased. After a few months I finally got myself to a foot specialist and got an X-ray. I had a broken bone in my foot! Luckily this healed. Even more telling, when I crashed my bike that fall and sprained both elbows, that X-rays showed no fractures. That spring I had broken a bone in my foot without even noticing it. Four months later — after an impact severe enough to take a chunk out of my iPhone cover — my bones remained intact. I credit taking the steps to combat anemia above with bringing my iron levels back and preventing further injury.

Remember that vintage 1970s television your family had that would always go on the fritz, right before your favorite show came on? You would turn it off and on again, maybe kick it once or twice, to bring the picture back.

Sometimes it would work. Sometimes it wouldn’t. Living with fibroids is a lot like that. They get better for a few months. Life goes back to normal. Then they get worse again. You hope your uterus will just “fix itself.” And then you realize that while you are hoping and waiting, life is passing you by.

For me, the inflection point was this March when I had to cancel plans with an old friend who was staying at a hotel in town. He was on a tight schedule and I knew that the spot he had chosen for us to meet had all-white leather upholstery. I’d had a bad night before, so I cancelled.

With luck there will be another time, and a time for all the hikes, parties, concerts, and travel I have missed as a result of my constant companion, “Aunt Flo.” I had a hysterectomy scheduled last year and then changed my plans because the symptoms had gotten better on their own. In November I tried a hysteroscopy (a less radical procedure using lasers to remove the fibroids) because I wanted to preserve my ability to have children. For me, the procedure was not a success.

I am coming to terms with the fact that a Mini-Me may not be in the cards, barring some unprecedented innovations in biotech. That’s ok. I had the opportunity to have children in my twenties, and at that time I passed. I had good reasons. I don’t regret it.

I am working with an MD who is also a naturopath, that I really like. This means a lot of extra labs and tests, but it is worth it. Yes, surgery is the likely next step but we are choosing to explore all options before going down that road. That makes the most sense. It is irreversible.

My goal right now is to get back to the level of health where I can take up amateur kickboxing, or run a marathon, or pour 60–80 hours a week into the community, creative, and work endeavors that I find most fulfilling. That’s my normal speed and pace. I do kind of miss it.

I wrote this article because many people are still uncomfortable talking about their fibroids. In particular, people don’t realize how serious but treatable anemia can be. Many women feel shame and discomfort bringing up the topic of menstruation. The result is ignorance about the health options we have available. We lose years of our life, and our health, well-being, self-image, and energy levels suffer.

All of us know people with fibroids. If you know someone who can benefit, please share my story. My one regret is that I didn’t learn more sooner.