Frickin’ Fibroids
The Fibroid Diagnosis
In May 2023, I started having irregular bleeding. Ten days after my regularly scheduled menstrual cycle ended, I was bleeding again like the original period never happened. I was concerned. My cycle is super regular, and my period tracking app is typically accurate to within a day or two. I did not know what was going on, but I wasn’t trying to die!! I attempted to get an appointment with my gynecologist, and the next available was months down the line. Even trying to get an emergency appointment, with a different doctor, would take weeks and I had to follow-up with the doctor’s office if that was going to happen. Healthcare in America remains problematic.
After five days my second period, in two weeks, stopped but I was still concerned. I made an appointment with my friend’s fibroid specialist, Dr. Randy Lizardo, because I figured I would need some kind of specialist. I had a history of uterine polyps so I thought maybe my polyps were back, but the bleeding was different. Besides, it had been years since I experienced any symptoms that were reminiscent of my polyp issues, especially since I gained some weight and stopped being severely anemic. To see Dr. Lizardo as a new patient, the first available appointment wasn’t until July. Since I stopped bleeding, I hoped my cycle would go back to normal, but I still wanted to be sure and see a doctor. I kept my fingers crossed until July.
Fibroid Types
Dr. Lizardo did a traditional gynecological exam and ordered some tests. He was pushing on my external uterine areas and asked if I had been experiencing frequent urination. I told him yes, but that was my normal. In addition to frequent daytime peeing, as in multiple times an hour, it was not uncommon for me to wake up between two and five times a night to go to the potty. I figured it was my blood pressure medication because it can function as a diuretic. Dr. Lizardo said, ‘You have a fibroid the size of a plum sitting on your bladder. I can feel it.’
During my last hysteroscopy in 2017 (while I was still living in California), my doctor said I had some tiny fibroids inside my uterus but they were nothing to worry about, so I didn’t! I was very surprised and honestly never thought I had a bladder fibroid, let alone one that was the cause of my frequent urination. Upon conversation with several other women who had their own fibroid journeys, we were all making different types of rationalizations to normalize the abnormal. Frequent urination had not been a symptom of my blood pressure meds ever since I was switched from a Beta Blocker to a Calcium Blocker, but I needed a reason for the peeing! Like me, these women came up with a narrative to cope with, and explain, their symptoms, and that narrative didn’t include fibroids.
Dr. Lizardo was like, ‘You’re not 80, you shouldn’t be peeing five times a night. How is the quality of your sleep?’ I didn’t even want to admit to myself how disruptive waking up a 1:00 a.m., 1:35 a.m., 1:58 a.m., and then again at 3:30 a.m., each time with a full bladder, was to my sleep. I had just accepted it as my normal. Sigh. Once Dr. Lizardo said removing that fibroid would alleviate the frequent urination, I was like sign me up. Because the fibroid was found by pushing on me, I still needed actual imaging. Initially, my transvaginal ultrasound and sonogram was scheduled for the end of August 2023, but one of my elderly neighbors from childhood passed away. It was important for me to go to Mr. Coates’ funeral, so I did. The next available imaging appointment was in early October.
The Testing
The ultrasound tech found three fibroids during the exam. During my consultation with Dr. Lizardo, after the ultrasound, he gave me a few options, including “wait and see,” but was clear that it was highly unlikely that the fibroids would go away on their own. I had already signed myself up for surgery at the thought of sleeping through the night so these fibroids were coming out! According to the imaging, all of my fibroids were on the outside of my uterus, therefore my abnormal bleeding was not fibroid related. My focus became reclaiming my bladder and the bleeding that sent me to the doctor completely took a back seat. The location of my fibroids also meant that going through my vagina for treatment was not an option.
My fibroid imaging occurred the week after my bunion surgery and the day after my emergency podiatry appointment, where the doctor had to lance a blister that was forming. I proactively secured help for the imaging appointment based on my lack of mobility the day before! I still couldn’t do any weight bearing and needed help getting dressed to go see Dr. Lizardo. When he saw me, the first thing he said was my foot needed to heal before he could do the fibroid surgery. He also gave me some other considerations by recommending genetic testing in case I had a pre-disposition to any reproductive cancers.
I was confused about why generic testing would have any bearing on my surgery decisions, but several women I chatted with said that if testing showed a higher risk of uterine, ovarian, or cervical cancer, the body parts would have to go. I hadn’t considered potentially removing anything based on test results, but still thought it prudent to at least know my risks, even if I decided not to act on them. I had the testing done at the end of the ultrasound appointment, and had to wait for the results to be released to my doctor. Of course, my insurance did not cover genetic testing, but I asked the billing questions up front. No one likes a surprise bill. My out-of-pocket costs would be $250 and it needed to be paid before the test was run!
Fortunately, I do not have a higher risk for any uterine or breast cancers and wasn’t faced with a difficult decision. However, Dr. Lizardo recommended removing my fallopian tubes based on my age and not having any firm plans to use my uterus. He told me that 10-15% of the general population gets ovarian cancer and that women who never had children are at a slightly higher risk. Additionally, there is a growing body of research linking ovarian cancers to the fallopian tubes. The removal of the tubes is a good way to kill two birds with one stone when women are already going in for a reproductive surgery, and especially when they are done creating life.
Dr. Lizardo told me I had until the day of surgery to decide. I kept the tubes. I knew he was disappointed, although he didn’t verbalize it. When he recommended the procedure, he told me it was advice he would give to his sister, and I appreciated that. I definitely care about prevention, however it felt right to keep the original uterus grouping together, at least until the natural end of the reproductive phase of my life. A previous gynecologist told me that most women don’t go into menopause until their early 50’s. I have less than a decade left! To that point, I asked about my risk of fibroid recurrence. Dr. Lizardo said if I was 25, they would definitely come back but at my age, I shouldn’t have any more smoke.
The Surgery
A few days after Thanksgiving, in November 2023, I had my fibroids removed! Instead of three, I had six fibroids, including a large one that was surrounding one of my ovaries. This was my first major surgery. My three previous hysteroscopies were all done vaginally, and my colonoscopy was anally. Even my bunion surgery involved bones. This surgery required cutting into my body to manhandle my uterus and take care of these “benign” growths that wreak havoc on so many women’s bodies and lives. I spoke to countless women, before and after my surgery, and almost all delt with fibroids. Most had some kind of surgery, including hysterectomy. As a good friend said, “Some of us had to lose our uterus.”
Fifteen years ago, I used to work at the National Women’s Health Network (NWHN), managing the health information department. I really enjoyed helping women make informed decisions, on their own terms, and wrote an article about Black women and fibroids. I had a basic understanding of the issue, but treatments change over time. What was considered a new procedure back then had more than a decade to evolve. At that time, there were not a lot of good options for women, especially those wanting to preserve their fertility.
This patient information resource has a great overview of the hormonal and surgical options currently available for fibroid treatment. I had a manual laparoscopic myomectomy. Dr. Lizardo said he didn’t need the robot for my fibroids. I briefly considered a uterine fibroid embolization, which would have required an interventional radiologist, but a friend of mine kept talking about the level of pain when fibroids slowly die in your body after the blood supply is cut off. That didn’t sound like fun. Dr. Lizardo specializes in minimally invasive surgeries. He was confident that cutting these fibroids out were the right move for me. Comparatively speaking, I had small fibroids because he has removed watermelon-sized growths.
I woke up from surgery in pain. It felt like someone had cut through my body and disturbed my uterus. I kept asking for more pain medicine and my bladder felt full, so I needed to go use the restroom at the surgery center. Urination was a requirement of discharge from the facility. I figured I would be released soon since the urge to urinate was there. I headed to the bathroom with a nurse who put a collection bowl over the toilet. I was in the bathroom for so long the nurses came looking for me. I left the restroom after about an hour, with absolutely no pee leaving my body, and headed back to my bed with a nurse by my side.
A wave of nausea hit me hard as soon as I reached my bed area. I was reaching for the trashcan, but the nurse thought I was going to fall and was trying to hold me up. I didn’t make it to the can, threw up all over the floor (fluids because there was no food in my system) and simultaneously started peeing. It was terrible. I made a literal mess and felt so bad. I waited for an hour for that pee to arrive on the toilet and it played me by coming out while I was vomiting near my bed. At least the nurses witnessed it, so it counted instead of me filling up the toilet cup. The nurses were great. They were not even disgusted with me even though I had disgusted myself. I filled out my patient satisfaction survey to give them lots of kudos.
I thought the nausea had passed but it came back again and just had me feeling terrible. There was nothing left in my system to throw up and I hate feeling nauseas. Dr. Lizardo came to check on me and instructed the nurses to give me a behind the ear nausea patch, that I needed to leave on for two days. If I didn’t get that patch, I would have spent my first day or two battling nausea in addition to the pain I was feeling. That pain included a terrible hurt every time I coughed or sneezed. I kept thinking how on earth do women have a cesarean section and go home with a whole baby to care for after they have been cut open much wider than I was. It ain’t right!
Recovering at Home - The Power of the Village & Pilates
Overall, my recovery went very well. Outside of the initial few days where I had to hold my uterus every time I coughed or sneezed; I also had an allergic reaction to the Neosporin I was applying to my incision site. That Neosporin was making my incision angry, but it cleared up after I discontinued use. I was a compliant patient. I did my best to stay ahead of the pain, I chewed gum, had Gas-Ex, and begrudgingly walked on the treadmill I borrowed from a friend. I was even good at not picking at the glue around the incision sites, one in my navel area and one in my pubic area. I followed instructions well. Most importantly, I took three weeks off from work to actually heal, including a few days before surgery to get my head into a healing space.
I learned my lesson from the bunion surgery and went grocery shopping beforehand. I bought a number of prepared foods in case I didn’t feel like cooking. My village really came through, keeping me company while I was recuperating. I sent an email out letting people know that I would need visitors and folks showed up! I felt so loved! Thank you to everyone who physically came to check on me or who called to see how I was doing. I had at least a dozen visitors who’s harassment were key to me getting on that treadmill. I really didn’t feel like walking but I did every time someone came over. Shoutout to my homie Quan who was my ride to both my bunion and fibroid surgeries. What is life without a village?! I love y’all!
Two weeks later, I had a follow-up appointment and was back in Pilates a few days later! I still needed to be careful because my external and internal stiches were still healing. Plus, I was only 6-weeks post the bunion surgery, so I needed to be cautious about my foot as well. I earnestly believe that this abdominal surgery went as well as it did because of Pilates. I have been doing Pilates since December 2021 and my core is definitely stronger. Yes I still have a layer of fat over that core, but I’m not giving up my occasional cocktails or cookies, with an assist from bacon and butter, so it is what it is. I have been building back up my core strength and have made so much progress that I am doing almost everything I was able to do before surgery.
After the procedure, my regularly scheduled periods showed up. There was no disruption to my hormones and no internal manipulation of my uterus; therefore, Dr. Lizardo said that was to be expected. At my final follow-up appointment in January, I was cleared to go back to my normal life. My incisions are healing well and look great too! They are camouflaged in the natural lines of my body. The glue that was in the naval incision stayed put for two and half months. I forgot it was in there until I had a visit with my primary care nurse practitioner in mid-February 2024 and it was ready to fall out of my naval. I went to her for the pre-surgery blood work so she was eager to know how I was doing.
The main scar in my pubic area is below my bikini line and about two inches long. When I was talking about my 2-inch scar to an older lady in my Pilates class, she said her scar is the entire length of her abdomen. That put my two inches in perspective. That lady is a beast at Pilates. She’s got a great core. The only way to see my scar is if I show it. My primary care was so impressed with how well I was healing, she got Dr. Lizardo’s information. I would share pictures, but the first ones I took, when the incision site was still swollen and reacting to the Neosporin, folks’ thought I was sending them pictures of my lady bits. I would never, therefore those pictures will not be shared! Dr. Lizardo’s Instagram page has plenty of pics of the fibroids he has removed and even an incision site photo, https://www.instagram.com/obgdc/.
I am four months post fibroid surgery and feeling great. The best part is I am sleeping through the night, like a big ole baby that actually sleeps through the night! Getting six to eight hours of sleep and only having to wake up to pee in the morning time is amazing!