I think I first heard the word “fibroids” in the late 80’s or early 90’s. It was when my aunts went to the hospital to have surgery for theirs. I was too young to get the full explanation, all I really remember is being brought to visit my aunty in her hospital room and seeing my mom crying in the hallway because whatever was happening meant her sister could no longer have children. First one aunt had her hospital visit, then the other.
I understood that it was an issue that affected feminine parts, something to do with womanhood and at that stage in my life it all seemed very grown up and far removed from me. My aunts were in their mid 40’s when they had hysterectomies and had their uterus (uteruses? Uterui?) removed because of pervasively growing fibroids. Back in those days, hysterectomy was pretty much what happened if you had symptoms bad enough to deal with. But before it gets to that point, I believe we can tend to overlook the indicators of what’s happening.
I’ve heard it from so many women — “I thought I just got fat” or “this is what happens to older women,” or “my belly got big over time.” Those are some of the symptoms you can see. Let me tell you about the ones I experienced that don’t show to the world.
Fibroids can lead to a number of negative effects, internal and external. They can affect your reproductive system, your digestive system, your urinary flow, your fertility, your general energy. They can cause pain and discomfort in your pelvis, your back, your stomach and more.
In hindsight, my symptoms began to make themselves apparent in my mid 30’s, slowly but surely. I ignored the symptoms as they began and for a long time, I didn’t realize how much my fibroids were beginning to affect me. Here’s what finally sent me to the doctor to see what the heck was happening:
- My period became a truly heavy and physically devastating experience every month. Like debilitating, curl up in the fetal position all day on the first and second days. Heavy flow, huge clotting, staining through clothing, too much.
- I became anemic from blood loss and my doctor ordered me to take iron supplements and eat red meat more regularly than I wanted to.
- For years I thought I had a “small bladder” because I’ve always had to urinate frequently. As my fibroid grew, it was like my bladder was on overdrive. I had to be careful to avoid accidents– when I have to go it’s more urgent than it used to be.
- At the peak of my fibroid issues, I would go to the bathroom 6 to 9 times a night. Imagine what my sleep pattern was like. Disrupted and destroyed, doing little good for my mind and spirit.
- The fibroid grew to the point where it rests on my bladder AND my lower back, so I have back pain now. Especially if I eat a full meal, I can feel how compressed it is inside my body, because of this foreign growth taking up so much room.
- When my back would really get to hurting and my body felt most uncomfortable and compressed, I tend to go to sleep. So bad sleep pattern + physical discomfort for me = naps at all kinds of inopportune times during the day. Affecting my productivity and business.
Over time even my body changed. Now my stomach protrudes and is hard in a way that it wasn’t in my twenties. I am told that’s because I have this 8.8 cm, softball-sized fibroid feeding on my blood, taking up room in my uterus and moving my organs up and around. This fibroid has affected my urinary and digestive systems, and made my monthly period an experience that’s untenable. It needs to GO. It was time for me to do something. But what?
There are a lot of people who claim to know what causes fibroids. “I have a friend of a friend of a cousin who quit eating (insert thing here) or got these pills on Amazon or drank a detox tea that worked for them so you should try that” — I have had many conversations that go exactly that way. I’ve heard it all at this point. Some say dairy’s to blame. Or eggs. Others say red meat or pork or poultry with all those hormones they use. I’ve heard that soy is a culprit and should be avoided at all costs. People tell you to try acupuncture or green tea supplements. There’s always an anecdote and an over-the-counter tea or pill you can purchase. Maybe these things can work for someone over time, I don’t want to be a negative Nancy if this approach is working for you and you can really see, feel and can measure for real that your fibroids are going away due to a natural remedy.
If you don’t have time because these things are growing inside you and affecting your day to day life, then there comes a time when you have to admit to yourself that a doctor’s appointment is the best recourse. I got to that point. They had to go.
Generally speaking, if your fibroids are smaller than 2 cm in size, your medical practicioner will encourage you to ignore them. If they’re small and they aren’t causing you any major symptoms, they’ll say don’t worry about them. But then if you ignore them, they can grow. As my fibroids grew, my ob/gyn encouraged me to consider my options.
I heard about uterine fibroid embolization, and I even once wrote an article for O magazine on the topic of better ways to treat fibroids, that article was all about Ulipristal, which could be the first long-term oral medication for the treatment of fibroids, and the Sonata System ultrasonic device.
Unfortunately my biggest fibroid clocked in at 8.8 cm, making it too big for those procedures.
I was encouraged and I chose to have an abdominal myomectomy. Why? Because it was depicted as the most sensible, typical way to get in, remove the fibroid without it leading to degradation, and end my symptoms without a doubt all while leaving my uterus and ovaries intact. From the ultrasound and the MRI I had, it looked to be a pretty easy, routine in-and-out procedure.
I had my surgery on a Tuesday. I was discharged that Thursday afternoon.
Right now, I can honestly say that I regret my decision.
When we did the ultrasound, it appeared that my fibroid was pedunculated, which means attached on a stalk. That typically makes for a simple procedure. Then the MRI made it seem like the fibroid was submucosal, which is more attached and more involved, but still a totally standard procedure. But then, when my doctor did the surgery and cut into me and could see what was really happening in there, she realized my big fibroid, the 8.8 cm one is cervical, or attached near the cervix. Apparently that’s a really vascular area, so it would be potentially dangerous to remove it.
She said it would have resulted in them having to remove my uterus and blood loss and then possibly needing a blood transfusion with a risk for unplanned for complications. She was not prepared for me to wake up to find out that I had been given a full hysterectomy.
My doctor did remove one fibroid, which measured around 3 cm. But that’s all she was able to do.
When I finally came to my senses and my doctor visited to tell me what happened, I could see how disappointed she felt to not be able to complete this surgery as planned. The vibe was subdued. The whole medical team was upset afterwards and let me know that this wasn’t supposed to go this way. This wasn’t what anyone wanted. Removing one 3 cm fibroid wouldn’t change the symptoms I’m experiencing. They were disappointed and so was I.
I have a picture of the fibroid they removed. Fibroids are white, flushed pink and red with blood from where they’re attached. It looks like a little round piece of chicken gristle or something. Pale and slightly pink around the edges.
Right now I’m healing slowly with a 10 cm cut along my bikini line, right under my stomach. Where your body hinges to sit upright or lay down. Everything hurts. Sitting, lying down, coughing, sneezing, laughing. My recovery time is expected to be 8 weeks. I can’t lift anything heavier than a gallon of milk. Bending over and sleeping on my side are impossible.
My mother-in-law came to stay with us for almost two weeks to help take care of me. My husband has been absolutely amazing, doing everything around the house. I would have been lost without them. Honestly.
After the surgery, my doctor recommended that I schedule an appointment with a doctor who specializes in embolization because they would have better results with less risk to reduce the size that way, now that they know where it is and what we’re dealing with.
How has the post-operation period been? Rough.
There have been nights where I have cried myself to sleep, and mornings where I have awoken in tears. There have been days where I just didn’t want to get out of bed. I know what it feels like to watch every hour go by and not fall asleep because of pain and discomfort. To count your days according to a never ending cycle of pills and an alarm clock of pain. There has been quite a bit of self blame, like what did I DO here.
I did what I was medically advised to do.
So what’s next for me? Heal from this abdominal myomectomy. I’m on 6 to 8 weeks of recovery and I’m at home living my best caftan life. I am on a 6 hour cycle of medicine and believe me, my body TELLS me when it’s time to take more.
In addition to acetaminophen and ibuprofen, the doctors prescribe opiods. They can come with some really negative digestive side effects.
I’ve now begun being able to do stuff like climb stairs like a normal person, cross the street like a normal person and I walk like the slowest speed on the treadmill right now but I’m doing my best to MOVE. Healing from a surgery like this teaches you how the body needs the right diet, plus steady movement in order to properly function. I’m doing my best to heal properly and taking it easy, as advised.
And finally I felt ready to write about all of it.
I’ve already scheduled the uterine fibroid embolization procedure soon. Later this month. I am scared because from all accounts it’s a super painful experience, but the results are supposed to be incredible.
I’m obviously frustrated about this whole journey, but there’s nothing I can do about this now. All I can do is pass along my advice for anyone pre-surgery.
I learned a LOT in this process, so I’d like to share for anyone else going through it.
— Fibroids are astonishingly common. When you realize you have them, if you mention that fact to just about any woman they’ll then reciprocate with their own quietly kept story of fibroids, of endometriosis, of hysterectomies and ovarian cysts. There’s a whole secret society of survivors and women who have this shared experience., there are more of us than you would think.
— There’s an incredibly helpful blog post on Lingerie Addict, a MUST read that helped me so much as I wrapped my mind around what I was facing. Through her post, I learned about the Facebook Uterine Fibroids group. It has been a lifeline for me. Everything I’ve been through, someone else already has and there are literal post-surgery pictures to prove it. Joining that group let me know I wasn’t alone. There’s also a Facebook group for Uterine Fibroid Embolization, so being part of both has been great for informing myself further. If you’re going through this, I highly encourage you to read Lingerie Addict’s post What to Expect the First Week After Your Open Myomectomy, and this really helpful piece on Zora, What No One Tells Black Women About Fibroids.
— I don’t want to knock or discount any of the natural approaches to dealing with fibroids, I just have to be honest about my own experience. In some ways, I wish I had taken a natural or dietary approach really seriously when I first was diagnosed with my fibroids. That way I could have seen for myself if it could have made a difference. Hindsight is 20/20.
— Don’t just go with the first opinion. Get your ultrasound and/or MRI and ask for a second or third or fourth opinion if you have to. Consider the surgery but also investigate embolization, and any other alternatives available to you. Maybe the Sonata system could be a fit for your situation, who knows?
Fibroids can affect your body with a battalion of symptoms, and for me just living with them was no longer a possibility. But I wish I had investigated less invasive solutions instead of just accepting what my doctors recommended as THE best way to go. Hindsight is 20/20. I can go back in time and wish and could shoulda wouldaded this situation in endless circles, or I can learn from it and make different choices next time.
I have lots of time to think about all of it now.
I’m sharing all of this in the hopes of helping someone else make the right decision for them.
There are SO so many of us out here, suffering in silence with fibroids or healing from hysterectomies. Dealing with the anxiety and fear that builds up before the operation. I want to hear from you. Let’s talk about our experiences and let others know they’re not alone. I definitely want to write a follow up post on this, but I would love to hear from you first.
Do you have a fibroid surgery story of your own? Share whatever you’re comfortable with, and know I’m right there with you!