Trina Caldwell knew she had uterine fibroids since she was 16 years old. But in late December 2020, the licensed practical nurse and mother of two experienced unusually severe symptoms.
Uterine fibroids are noncancerous growths of the uterus (womb) that most often appear during a woman’s childbearing years. Fibroids range in sizes from miniscule and undetectable to the human eye to those that grow big enough make a woman appear as if she is pregnant. The growths develop from the smooth muscular tissue of the uterus and are caused by the repeated reproduction of a single cell. Fibroids form a pale, rubbery mass and may also distort the inside as well as the outside of the uterus.
Most uterine fibroids cause no symptoms, but some women who have them experience problems including heavy, prolonged monthly periods, anemia, pain, or pressure between the hip bones or in the back of the legs, pain during sex, a frequent need to urinate, constipation or bloating, a feeling of fullness when eating and a palpable mass in the abdomen.
Real Health spoke to Caldwell and her husband about what happened that night and how she managed this common condition that is three times more likely to affect African-American women in comparison to their Caucasian counterparts.
Do uterine fibroids run in your family?
Yes, I found that out this year when I talked to my sister; she had it. I have two older sisters who both had the condition. But fibroids were not as bad for my middle sister, they don’t really affect her much at all.
There were never discussions in my family about uterine fibroids until when I started having my problems around age 42 or 43. I called them to ask, so that’s how I found out their details.
In retrospect, when did you first think that there might be a problem and how did heavy menstrual bleeding affect your life and your relationship on a day-to-day basis?
The problem had gradually become worse and worse. In the beginning, my period was heavy, but then my cycle would continue normally. But as time went on, I started having in between menstrual bleeding. Once I’d go off my cycle, a week or so later I’d go back on and bleed heavily. I never knew when I would start bleeding, so I had to take precautions every day. Of course, this affected my relationship very much. I couldn’t be intimate with my husband because I would never know what was going on with me.
What happened when you began having severe problems and went to the doctor?
When we got there, I told the doctor what I thought was going on and we talked about the uterine fibroid embolization treatment and how it could help. But as he was talking to me, he said I didn’t look right to him. He said that I looked like I was ‘washed out.’ Then he checked my eyes and said the eyelids weren’t red. There was, basically, no blood, so he wanted to do a special test to check my blood levels. The very next day he called with the results and told me that my blood levels were dangerously low.
He told me to go straight to the emergency room, which I did, and they ended up keeping me overnight to give me a blood transfusion. I had to have three units of blood because my level was very low.
What options did they offer for possible treatment?
My doctor at USA Fibroid Centers does UFE, but I knew I had other options too. When they admitted me to the hospital, my regular ob-gyn came in and suggested that I just get a hysterectomy to get rid of the fibroids.
When you heard hysterectomy, what did you think?
Well, I had already decided that if I didn’t have to do that procedure, I didn’t want to go through a major surgery like that. I opted for the UFE at USA Fibroid Centers.
What was your experience with UFE treatment like?
I really didn’t do much preparation. Once they gave me the appointment, I just went. There wasn’t anything major I had to do or change because it was a same-day treatment. It didn’t take very long, maybe 30 to 45 minutes. I was given general anesthesia, so I was asleep during the procedure. Afterward, I went home the same day.
Do you and your husband talk regularly about each other’s health issues?
Yes. He was the one who started doing the research to find out what treatment would be best for me to have because the heavy bleeding I experienced was bad.
David, are you in the habit of accompanying Trina to the doctor?
Well, I’m kind of overprotective, so any time she goes to any kind of doctor I would go if I wasn’t working and I could be there. This visit was quite a bit different because it was a lot more serious so it stood out. Once we found out what was going on, the doctors were amazed that she was alive!
But my wife is a trooper. We don’t really like going to doctors and getting shots. I still believe in going to a doctor for your health if they know what they’re doing, but I don’t want to be a guinea pig. Uterine fibroids were new to me and not something that I was aware of, so when she was having little pains here and there, it didn’t bother me. I thought it might be gas; I thought it might be bloating, or whatever. But then one day we were at our son’s recital—all of us are musicians my daughter, my son, and my wife sings—and she could barely sit down.
I was almost in tears because I could see she was really hurting, so then we really needed to figure out what’s going on. Her condition was erratic and weird because she would experience those situations and symptoms and then it would go away for, like, two months.
I would ask, ‘Do you need to go to the doctor? Do you need to go to the hospital?” She would say, ‘I think I’m okay. Let’s see what happens tomorrow.’ Then days later she’d be just fine. Still, I’d ask, ‘Are you sure?’ Everybody every now and again can get a little ache or pain, that doesn’t require that they run to the doctor right away, but I told her, ‘If it’s extreme, let me know. Don’t hold onto that pain; we can go.’
Once we were at Whole Foods and a similar incident happened again. But this time she was weak; I think it was the blood loss from the heavy bleeding. She was doubled over. I’m like, ‘Baby, get up, people are gonna think we’re crazy and start wondering what’s going on!’ And people walked by and were asking, ‘Are you okay?’ I’m like oh, my God, this is so embarrassing. I had no idea she was not feeling her best. I just knew about her experiencing heavy bleeding, but, hey, I’m not really thinking about it. I didn’t think it was something that might last forever; I just thought that this was just something that happened occasionally.
Then the last straw was in late December when a few times she didn’t want to get off the bed. I said, ‘No, that’s enough; that’s it!’ And she said, ‘Babe, let’s just go.’ And so that’s what happened.
The reason I said she’s a trooper is because she tried a whole list of remedies, which I think gave her a little bit more time. But the problem, in my opinion, is that it was a little late to do holistic treatments. I felt like she had already lost too much blood. Holistic is wonderful, but those treatments take a lot of time. I know any treatment she took needed to work extremely fast and she needed something to suppress the pain so she could heal. She didn’t have anything to stop the bleeding. She could barely walk down or up the steps. These are the symptoms that we were watching. She’s a fighter, but I’m just so glad she stopped fighting! Because when she had just the blood transfusion alone that literally changed her life.
When the doctor called and instructed you to get right to the hospital, what went through your head?
I hated it. This happened on New Year’s Eve. I wasn’t upset that he called, and he did nothing wrong; nobody did anything wrong. But being a man—and I’m a man of faith—I was very perplexed as to why she was going through this. My wife is like one of the most perfect people in the world. Primarily, the reason I was upset to see her go to the hospital was because of COVID. At that time, I thought there was an excessive overreaction to the coronavirus. I had no problem wearing the mask. My problem was that they wouldn’t let me in the hospital with my wife!
After we got to the hospital, they took her from me for about a day and a half. I didn’t know what was wrong with her; we didn’t know what it was. We knew her hemoglobin levels were low. But all I knew is how am I supposed to feel comfortable while I’m separated from my wife, and they won’t let me in? I wanted to be in there, so I could safeguard against anything, like them giving her something that she didn’t need. But I didn’t know how bad her problem was.
The doctor told us what her iron levels were and what a normal level is—normal iron levels are around 10; she was at a three and on the threshold of having a stroke. That was one of the hardest situations in my entire life!
When I came home that night, that was the first time in my life that my wife was in the hospital overnight!
What have you learned from what your wife went through with uterine fibroids?
I probably need to do a podcast about this because men never really say much. What I’ve learned is, one, don’t suffer in silence. My wife was a victim of this because she sat there for about four years or so while experiencing these little pains. Whenever you start feeling something consistently, don’t ignore it.
I would also recommend that people have great health care. I say to all husbands out there, if your wife is tired, she’s weak and sleeps a lot you do the research.
That’s what I did, and I was able to tell her doctor about some of the treatments. He said, ‘Man, you really do know this!’ Anybody who is going to touch my wife, I want to know what they’re about to do. At least uterine fibroids are usually benign tumors and doctors can deal with them with an absolute certainty. Also, ask questions. A lot of men are quiet when this stuff happens. Men are scared on the inside; they don’t want to show fear on the outside. But it’s okay for them to let the people know how they feel. Men suffer in silence as well going through the pain with their wives waking up bloated and hurting.
Be there for your wife. When you find out how the treatment works, do everything you can to make her recuperation easy. My wife didn’t have to drive herself to the clinic or drive herself home. She did not have to do anything.
My pastor is a wonderful pastor. The first night my wife was recovering, I was going to cook. He said no and paid for our dinner. I thought that was nice, so don’t suffer in silence. Talk to people about it; talk to family members about it. Don’t be quiet about this because someone may have the key to your healing with one word, one phrase—UFE treatment—uterine fibroid embolization.
I know the name of this treatment. I know the acronyms; I know the different types of treatments. Uterine fibroid embolization cuts off the blood supply to the fibroids. The point I’m making is that women should act as soon as they feel any lumps, any constipation. It’s not normal to be constipated for three weeks. It’s not normal for you not to be able to walk sometimes.
Now technology is available that doctors did not have 40 years ago, so don’t wait and don’t hesitate! We faced this situation together, but to do that we also needed to include a professional on our team.