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Warning: The following contains graphic content. I wanted to share my experience as I myself scoured the internet for personal experiences with large uterine fibroids and abdominal myomectomies. The not knowing is difficult so I hope this helps anyone who is going through a similar situation.
Aloha with love,
A few days after Christmas Day 2019, I discovered a hard mass the size of a grapefruit in my lower belly during a routine self-check. That first night I remember staying up all night googling everything from visceral fat to stomach cancer; but, believe it or not I managed to ignore it for a week. Every night after the discovery, I found myself pushing in on my belly and it never changed or disappeared. My fear began to snowball and only grew worse when it was the only thing I could think of 24/7. A couple of days later I broke down and asked my Mom to lie down so I could feel her belly. Hers was completely soft and I could push into it deep without feeling anything. A few hours later I walked into my local clinic and got it checked out right away.
Looking back, finding out what was wrong with me took no time at all. My clinic allowed walk-ins and once I told the reception desk that “I discovered a large hard mass the size of a grapefruit in my lower belly,” I feel they made an extra effort to get me to my doctor as soon as possible. The diagnosis was even quicker. My doctor had me lie down on my back, placed both hands on my belly and pushed down. She determined that it was a fibroid and I burst into tears.
Did I know what a fibroid was? No clue. And looking back on it now, I can laugh about it because I now know it’s such a common thing among women. But at that moment, the stress of the past week and finally having a name for what was growing in my belly crashed and toppled me over. My crying session lasted just a few seconds though as I really had to listen to what the doctor was saying and here’s what I learned that first day:
- Uterine fibroids are really, really, really common. In fact, most women can and do live with them.
- They grow in/on the uterus.
- They are tumors, but for the most part they are almost always benign.
- I would need to meet with an OB/GYN.
- My fibroid was pretty big. In fact, the doctor was surprised that I came in because I discovered it myself and not because of pain/symptoms/etc.
- I needed to have an ultrasound done asap.
The visit was over in less than 30 minutes and while the drive home was calm, I burst into tears in front of my parents, who I’m sure were extremely worried at first since I couldn’t tell them what the doctor said. I can only imagine what kinds of horror was going through their minds for those first few seconds. But after some hugs I calmed down and once I repeated what the doctor said (that fibroids are almost always benign), we all felt extremely fortunate and grateful.
It took me about a week to feel ready to tell my friends, and I can’t stress enough how awesome it is to have a strong support system behind you. Whether it’s your family, friends, coworkers, or even an online medium, I wish everyone can have that outlet so that they can share what’s bothering them to others who can sympathize.
The Testing And My Symptoms
My ultrasound was scheduled a few days later and it was confirmed at my next doctor visit that I had 1 large non-cancerous fibroid (and a small polyp). It turns out that normal uteruses weigh between 50 to 100 grams. Mine was 150 grams. My fibroid was estimated at over 500 grams, making me into an estimated 3-month pregnancy. The doctors and I agreed: WOW. They were surprised I didn’t have symptoms, but through my own online research, doctor’s visits, and taking a closer look at my body, I learned a few things about this uterine fibroid of mine:
- My fibroid was located on the back of my uterus. Fibroids that grow in the front generally seem to create the most painful and irregular menstruations even when they’re tiny. Fibroids in the back (like mine) often grow without attracting attention and can grow quite big before they’re discovered.
- I most likely needed to have surgery (my OB/GYN later confirmed and agreed with this). On the internet, a lot of women with similar-sized fibroids had their’s removed. Any bigger and it’s not really something you should be living comfortably with inside your body.
I also found out several possible “symptoms” that I hadn’t realized I’d been living with:
- My periods were pretty painful. I think they’ve been slowly getting worse, but I just never questioned it and just thought this was “normal” as they came about once a month and always hung around for 7 days exactly.
- I was going to the bathroom all the time to pee. During the day I sometimes went once or even twice an hour and usually only a few drops would come out. At night, it was normal for me to wake up 2 – 3 times to relieve myself.
- I had lower back and right hip pain that seemed to be getting worse even when I lost some weight. This was extremely frustrating as I was able to lose about 25 lbs. at one point, but the increasing pain in my back and hip just made me depressed.
- At least twice a week I couldn’t sleep because I was bloated, had upper abdominal pain, and constantly belched. In some cases I read online, large fibroids could affect the “door” to your stomach by keeping it open and letting your stomach acid run back up (like heartburn).
- The fibroid inhibited my movements. I didn’t realize until after the diagnosis that I got out of bed like a pregnant woman. From lying on my back, I’d push myself up on my elbows and then hands, then walk my hands up until I was in a sitting position. From there I could scoot myself off the bed or roll off. Even simple actions like picking things up from the floor was difficult for me.
(I’m happy to say that after my surgery to remove my fibroid has addressed all of my symptoms. But I’ll save that for my next post about the actual surgery!)
The Research That Helped Me Out
Throughout this whole process, I was devouring anything and everything I could find on uterine fibroids. At first I read all types of articles, blog posts, and forums, but as I learned more about uterine fibroids and connected the dots between my fibroid, different symptoms, and surgical options, I began to hone in on personal accounts written by women who had gone through these procedures and what their experience was like.
The most helpful were accounts written by women who had similar-sized fibroids. Some chose different types of surgeries/treatments, and by reading about their experiences, I learned that an abdominal myomectomy (basically a c-section) is the method I wanted to go with. At times I found myself frustrated because I felt there weren’t enough accounts similar to mine out there. If fibroids were so common, why weren’t more women with 6-inch fibroids writing about their experience? This is the main reason why I decided to document my experience to add one more online resource for anyone out there with a 6-inch fibroid on the back of their uterus.
Here are a few online resources that really stuck with me:
- I saw Glo Atanmo speak in the summer of 2019 at TravelCon in Boston, discovered my fibroid in January 2020, and her post about her ovarian cyst was one of the first blog posts I stumbled on. Yes, they’re two different things, but I really connected with how her cyst affected her mentally. It’s a good read especially for those who have a cyst/fibroid that is affecting them physically and their self-esteem. Thanks, Glo! You inspired me to write down my own experience!
- This Reddit forum helped me understand what to expect for surgery. Different surgeries are mentioned here so if you’re debating about which surgery to do, this is a good starting off point.
- Another Reddit forum about a large fibroid on the back of the uterus. The original poster was exactly who I was looking for and the discussion helped me figure out what was going on in my own body.
- This Reddit forum will help you figure out about how much healing needs to be done depending on the type of surgery you choose. I also liked this Reddit forum where someone 2 days into recovery decided to answer any questions.
- It wasn’t until much later that I added the bloating/upper abdominal pain/belching to my symptoms list. I was having several bad sleepless nights and wondered if the size of my fibroid was affecting my stomach and digestion. After some digging, I found this short article that confirms the connection between acid reflux and large fibroids do exist. I also found this case of a calcified fibroid that caused a woman severe upper abdominal pain. I don’t understand most of medical lingo, but at least the possibility of stomach pain caused by a large fibroid existed and I wasn’t just imagining things.
- Since I had decided on the abdominal myomectomy, I found I had a lot more success finding online resources about the surgery when I googled terms such as “c-section recovery rate” or “c-section when can I walk.” It’s basically the same surgery (you’re just taking out a fibroid instead of a baby), so the recovery and how patients feel after the operation is pretty similar.
Setting Up The Surgery And COVID-19
By the time I finished the testing it was early February 2020 and my doctor and I decided on abdominal myomectomy to remove the fibroid. It’s the most invasive surgery with the longest recovery time, but the results are practically a sure thing especially with a fibroid my size. The doctor suggested an April date at first, but I had a trip coming up in June, so we agreed to do the operation late June. About a week later I really regretted this decision. The fibroid consumed my mind and now that I suspected it was causing my menstrual pain, frequent urinations, lower pack pain, right hip pain, sleepless nights, and restricted movement…I just wanted it out of my body because it was making me miserable. If there is anyone out there considering to delay their operation, my advice is don’t. Living with the fibroid before I knew it existed was acceptable. Living with the fibroid after I knew it was in me was horrible. As they say, ignorance is bliss!
Of course, COVID-19 happened and Hawaii shut down late March 2020. All non-urgent surgeries were affected and pushed back month by month. With my trip cancelled and me wanting the fibroid out, I finally managed to squeeze in an appointment for an abdominal myomectomy on May 27, 2020. It was still a long wait, but knowing that this was the closest date possible gave me some relief.
From discovery to surgery date, the process took me about 5 months (technically it would have taken 4 months if I had gone with the suggested April date and COVID-19 didn’t come into play). But the last 3 months were mostly just waiting for the surgery date to arrive. The first 2 months were the most important since I met with my family doctor first, got sent to an OB/GYN, had the ultrasound done, then had 2 more follow-up appointments with my OB/GYN.
It was a roller coaster ride for that first month, but I couldn’t feel more grateful that this was a fibroid. The fact that the fibroid got so big that I discovered it myself was scary. The experience put the importance of my health into clear perspective. You only have one life to live, so take care of yourself so you can enjoy it as much as you can. Also, because you only have one life to live, take advantage of it and live it.
I’m not an extreme risk taker – you won’t see me bungee jumping or swimming in the deep ocean anytime soon, but that doesn’t mean I can’t live my life to the fullest. I’ve begun to take an interest in my Mom’s cooking and documenting her recipes so I can cook them in the future. In April, I began building a 200+ gallon aquaponics system in my front yard and am even considering converting a van to a camper van one day. These are all baby steps to a full and complete life built on top of several small successes, failures, and adventures.
Stay tuned for my follow-up post about my surgery experience!