Future tripping or empowering? My fibroid journey
🚀 MyAdvo Fibroid 101 Guide now available!
As we close out Fibroid Awareness Month, I’ve been reflecting on this new phase of my fibroid journey: figuring out if and when to get surgery for 2 new fibroids since my first myomectomy in 2019, while planning to conceive in the coming years. This past month we released the MyAdvo Fibroid 101 Guide and putting it together brought up questions: “Why is it so important for me to know when and how to go about it? Should we just try and see what happens?”
I’ve been trying to strike this balance between future tripping and being avoidant. On one hand, I want to make it easier for myself to conceive and have a healthy pregnancy. On the other hand, I’m dreading more procedures and surgeries and the accompanying pain. Many women receive a “just try and see” recommendation, even from their healthcare providers. It’s often received as dismissive of their family planning decisions. We also hear a similar tone when seeking answers to menstrual symptoms, “wait and see” or “everyone has painful periods.” Sometimes waiting is necessary, but we aren’t taught to recognize the signs that require action. In terms of symptoms, at least 25% of women will experience fibroid symptoms, and up to 80% of women will experience fibroids by age 50. Unfortunately, most of us don’t know what fibroids are or how to identify when they are becoming problematic. More often, we normalize our symptoms and internalize our pain, ignoring or accepting it, until it becomes debilitating or too late.
This is why self-advocacy is important: seeking information, creating choices, weighing your options, and ultimately making decisions about the care YOU want.
A big part of my journey with chronic conditions is considering when to undertake medical intervention, taking into account life events and medical urgency as well as the physical and mental strain of going through diagnostic tests, procedures, and surgery. Since fracturing my spine a year and a half ago, I’ve honestly struggled mentally with the prospect of painful medical interventions, making planning for fibroid treatment and conception, especially if IVF is involved, more critical.
My current fibroid situation
Unlike the first time around, my fibroid symptoms are relatively manageable right now; I’m not anemic nor bleeding 3 weeks out of 4. The difference now is that planning to conceive motivates me to seek treatment versus debilitating symptoms.
I’d been fibroid-free for about two years before my fertility specialist found a potential new fibroid during a transvaginal ultrasound for my second round of egg freezing. I didn’t have any symptoms then, but after 6 months of tracking, I noticed my periods getting longer from 3-5 days to 7-9 days and heavier during the first few days.
My annual well-woman exam was coming up, so I planned to ask my gynecologist to schedule a transvaginal ultrasound. I wanted to understand the fibroid location and size as I knew that would impact treatment. We found 2 fibroids:
1 pedunculated fibroid: Attached by a stalk to the uterine wall and growing in the back, outside of my uterus
1 potentially submucosal fibroid: Forming just beneath the inner lining of the uterus, growing near my cervix, and possibly protruding into the uterine cavity
Both between 7-9mm, so still pretty small. For comparison, when I was diagnosed with my first fibroid, it was 1.1cm with no symptoms. But in a year’s time, it had more than doubled to over 2cm, triggering extremely heavy and weeks-long periods.
My gynecologist advised monitoring the fibroids as my symptoms were not interfering with my life, and I wasn’t trying to get pregnant soon. The pedunculated fibroid wouldn’t need to be removed as long as it didn’t grow too large and trigger symptoms. The fibroid closer to my cervix and potentially submucosal could potentially be problematic for embryo implantation and may need surgical removal before trying to get pregnant.
Preparing for conception with fibroids
It’s honestly hard figuring out what to do when planning to conceive knowing you have fibroids or a history of fibroids, especially if you aren’t working with a gynecologist who can help you understand your options. Most individuals with fibroids can get pregnant naturally and experience no issues during pregnancy. Similarly to treating symptoms, the location and size of the fibroids determines if and what treatment is necessary for a healthy pregnancy. For example, submucosal fibroids, the ones that protrude into the womb cavity, are known to reduce fertility.
Stat-wise, 10% to 30% of patients with fibroids may face pregnancy complications as well as delivery complications:
Miscarriage
Preterm labor and birth
Baby is breech
Placental abruption
Cesarean section (c-section is 6x greater for women with fibroids!)
Postpartum hemorrhage
Incomplete cervical dilation
Poor uterine contractions
Interestingly enough, women who have fibroids and become pregnant don’t need to see a high-risk obstetrician (OB). That being said, there are other factors determining high-risk pregnancies, notably maternal age—35 years old and onward— especially for first-time mothers.
I’m 32 years old, not planning to get pregnant before 34. My partner and I would love 2 children. I seem prone to regrowing these submucosal fibroids. Just considering these 3 factors and what I know about fibroid complications, advocating for myself means getting answers to 2 questions about my health:
How do I time fibroid surgery to heal before trying to get pregnant and prevent new fibroids?
What can I do to stay fibroid-free for as long as possible while trying to conceive?
“Watchful Waiting”
Working backwards from my health goals has helped my decision-making process: I want to avoid multiple procedures before trying to conceive and reduce my pregnancy risks despite my age.
After last year’s annual well-woman exam, I decided to carefully monitor my fibroid symptoms and check their growth after 6 months. When I called my gynecologist to schedule another transvaginal ultrasound in the spring, she said it likely wouldn't provide more information on size because the imaging was already difficult. If I wanted more information, a saline sonogram was a better option. I know saline sonograms can be painful as the he procedure involves holding the cervix with a tenaculum and inserting a catheter to expand the uterine cavity with saline for better imaging. Although the procedure typically doesn’t take more than 30 minutes and often done in the doctor’s office, I wasn’t ready to deal with pain, especially since it’d barely been over a year since my fractured spine. I postponed the test.
What’s Next
With this year’s annual well-woman exam approaching, I’m committed to getting an update on the size of these 2 fibroids and if any more have grown. But to be honest, I’m still dreading how painful the saline sonogram may be and mentally blocking on being able to handle the pain. I brought this up to my fertility specialist in a separate consult, and he recommended I ask for an MRI. Coincidentally, my first fibroid was discovered this way when investigating my congenital uterine septum, now removed.
I’ve had to learn how to discuss my pain threshold with different providers and asking for other diagnostic options. The most empowered I felt was during my fractured spine accident, desperately trying to tell nurses and doctors that I needed different pain killers than opioids because they make me nauseous to the point of vomiting and that would be impossible lying down.
I think back often on how much I advocated for myself across multiple care teams. It shouldn’t take such an extreme scenario to remind me how absolutely reasonable it is to discuss pain, but it’s a success story that motivates me.
So the plan now is to request an MRI as part of my annual exam before making a decision on if/when surgery is needed. There are a lot of other personal factors that will influence this decision like insurance deductibles, symptoms progression, travel and wedding plans. In the meantime, I’m researching a regimen to strive to be fibroid-free. Let me know in the comments if you have any recommendations!
Going back to “future tripping”, I sometimes think it shouldn't be so complicated. I've even had family members remark how it wasn't like this in their day. But one of the experiences of being a woman with chronic conditions like fibroids and PCOS is how dire having choices is because it is harder. In my experience, timing = choice because timing can open up opportunities in our health journeys. Timing affects everything, from managing pain and scheduling procedures to considering life events like trying to conceive or career changes. Even deciding whether to have testing or treatment at the beginning or end of the year can depend on meeting insurance deductibles. These factors all play a crucial role in our decision-making processes, and none of it should be diminished or dismissed. Question everything and keep asking for help, so you can get the care you want and need on your terms!
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