This time, it was like a crime scene every time I moved. And there was no end in sight. The teledoc thought this sounded much more serious than I did, and told me I needed to go to the emergency room. It was Sunday night. I went to the emergency room.
For whatever reason, I didn’t go to my normal hospital and instead went to the closest one. I didn’t spend too long in the waiting room before they found me a room to wait in, where I was to get undressed and put on a hospital gown. My 1-hour time limit was nearly up, so I had to venture to the ER bathroom, which was disgusting with mystery fluids on the floor and poor lighting. Finally, I was seen by a person (I don’t know if it was a doctor or not) and got to have a vaginal ultrasound, wherein a wand is stuck up the vagina, rather than a normal ultrasound where a wand is rolled around on the stomach.
A very frustrating part of having medical tests done is having technicians who are restricted from saying anything as they perform the test. I’ve had dozens of mammograms and breast ultrasounds, and I wish the technician could at least say they see something abnormal. I understand that they can’t diagnose the problem, but at least let me know they see something. Don’t just pretend everything is routine. So my vaginal ultrasound technician couldn’t say anything was weird, but from all of my breast ultrasounds, I know what it looks like when the ultrasound technician takes pictures of a problem and measures it. I knew there was something wrong, even though the technician wasn’t allowed to confirm this.
What was wrong turned out to be a uterine fibroid. In other words, a benign tumor, although the benign part still had to be confirmed by a biopsy. I didn’t have a regular gynecologist, but I needed one. The ER visit did nothing to stop the bleeding, just to get some tests done so I was armed for a visit with a gynecologist. The next morning, I went through my health insurance website and found the list of available gynecologists. I started calling them, looking for one thing specifically: who could see me that day.
The doctor who was available that day happened to work for that hospital and was in the same building as my GP. She looked at the test results from the night before and prescribed the birth control pill as my first option to get the bleeding under control. My other options for controlling the problem were a uterine fibroid embolization (UFE) or hysterectomy. I was a little overwhelmed with the sudden onset of this, so left with my prescription and options.
After I took the first birth control pill, the bleeding nearly stopped. But not quite. I ended up having to take two birth control pills a day for a while to get the bleeding to stop. Eventually I was able to drop it down to one pill a day. I did a lot of research on the two surgical options and decided to try the minimally invasive UFE. The gynecologist didn’t do that herself, and didn’t know who did. I was on my own to find a doctor to perform the operation.
Somewhere along the line, I also had my first MRI of the fibroid.
When you research the UFE surgery, you will no doubt find the website fibroids.com. It belongs to a doctor named Bruce McLucas, and that’s who I went to. This was almost a year later, but since I was told this wasn’t urgent, I didn’t treat it as urgent. The pill had stopped the bleeding, so my immediate troubles were controlled. Dr. McLucas read one of my MRIs and described the fibroid as the size of hands holding a baseball. It was big, over 7 centimeters. He though I was a good candidate for the UFE, so we scheduled it and in November of 2018, I had the procedure.
That year was crazy. My mom was really sick and I spent several weeks in Texas helping her. She wanted me to stay longer, but work, pets and surgery meant I had to come back to California. My sister flew out to California from Texas to help me while I recovered, and to drive me to the doctor. The surgery took place the day after Thanksgiving, so my sister had to travel on Thanksgiving day. It meant the trip to Beverly Hills was easy because there wasn’t a lot of traffic on the road. The surgery itself I don’t remember. I do remember waking up at the clinic in tremendous pain, mostly from the catheter. They tried several pain killers on me, including dilaudid, fentanyl and oxycodone, but none of them had any effect. After a short time, still in tremendous pain, they let me go home since I was able to pee. That was the only criteria for being released.
I went home with a prescription for narcotics which didn’t work and instructions to wear compression stockings for days while I recovered. I think the incision was in my upper leg, but I don’t even remember now. I know they used a Starclose™ titanium closure thing in my leg, so an x-ray would be able to confirm where exactly the surgery was. (I since then have another piece of titanium in my body, in my left breast as an ID marker for a fibroadenoma which was biopsied and is benign. Just for those keeping track of what percentage of my body is titanium.)
A UFE is when little particles are injected into the blood vessels which feed the fibroid, blocking off the blood supply. Ideally, after the procedure the fibroid is starved and will then shrivel and shrink. The smaller fibroid would either then no longer be a problem, or would be much easier to remove because it would be smaller. If only.
After the UFE surgery, I had to wait several months and then have another MRI to see if it had worked. It hadn’t. In fact, the fibroid was larger now. It was still growing and not shrinking, closing in on 8 cm. Hands holding a grapefruit was an abstract description, so I researched things that were close to 8 cm in diameter and round. A baseball is 7.3 to 7.5 cm diameter. My fibroid was bigger than a baseball. And, according to my GP, about the same size as a 5 to 6-month-old fetus. Dr. McLucas wasn’t convinced right away that the surgery had failed. We waited and I had another MRI after another six months. It wasn’t shrinking or improving. Also, I had never stopped taking the pill. I don’t know where the time went, but in around October of 2019, Dr. McLucas suggested I stop taking the pill to see if maybe the bleeding was better.
For the first few months after stopping the pill, nothing happened. But I had been taking the pill every day since the end of 2017. And then the bleeding started again. Just as bad as before. I started to take the pill again, but one pill a day didn’t help. I started taking 2 to 3 pills a day, still having some bleeding. I made up my mind that I would have the hysterectomy. Unfortunately for me, in 2019 I switched my insurance to an HMO and the doctor my GP recommended for the hysterectomy didn’t take that insurance, so I couldn’t even get an appointment. I spent 2019 getting a couple more MRIs and trying to work with my insurance company to schedule appointments, which was extremely frustrating after having been on a PPO plan for most of my life.
For 2020, I went back to the PPO, for an extra $300/month in premiums. I called the suggested doctor to make an appointment, planning on April for surgery. A friend had offered for me to stay with her while I recovered, and April was good for both of us. And then there was a pandemic. No elective surgeries allowed (how this is elective is another problem with our current system), so I had to wait.
Then came the struggle of getting enough birth control pills out of my insurance to keep my life from being all about blood. For the few months when I stopped bleeding, I kept picking up my prescription, so it took a while for not having enough pills to become a crisis. Eventually that all worked out, but it did lead to some anxiety. Once surgeries became allowed again, I scheduled an appointment with the surgeon, no longer wanting to live with the daily cloud hanging over my head and the extreme amount of hormone medication I was taking to control the problem.
The surgeon scheduled my operation for September 11. Easy to remember. I was just going to my uterus and fallopian tubes removed. The ovaries could stay. He thought he would be able to do the surgery vaginally and laparoscopically, which was what I wanted to hear. He also told me I’d be “pleasantly surprised” by how easy the recovery would be. The pandemic had changed my desire to stay with a friend while recovering and to have friends check in on my cats while I was away from my own house, so an easy recovery was what I needed.
On September 11, I had to be at the hospital at 5:30 am, for a surgery which was scheduled for 7:30 am. A friend picked me up in the wee hours of the morning and drove me to Burbank. The hospital wanted me to fill out an advanced directive, which I wanted the same friend to fill out, so she went inside with me while we searched for witnesses for the document. Unfortunately, hospital employees can’t witness it, so I texted my friend she could leave. No advanced directed for me for this surgery. I spoke with the anesthesiologist, and she decided the doses of opioids I was given at the last procedure were too low, because the antidepressant I take makes them less effective. I was very worried I wouldn’t have any pain management after the surgery.
I may have been wheeled into the OR and asked to move from the gurney from the check-in room onto the operating table. Or not. Hard to remember. I wear glasses and had to take them off before leaving the check-in room, so I couldn’t see much of what was happening. I do remember when I was wheeled through the hospital corridor it reminded me of movies when the overhead lights are seen moving past in the point of view of the patient on the gurney.
When I woke up, I don’t think I was in my hospital room yet. I just remember a woman standing beside my bed saying something like, “There were complications. We had to cut you open.” Just what I didn’t want. I think I fell back asleep after that. I woke up again in my hospital room, which I was pleased to see was private, and a nurse asked me if I remembered that lady giving me the bad news. Yes. I remembered.
My plan was to go home the same afternoon after the surgery, but being cut open meant that was out of the question. I had two main areas of pain. One from the catheter, which they insisted on leaving in for the whole day, and one from the IV line in my arm, which was absolutely killing me. They gave me dilauded, and this time it worked. It felt great. But I think it almost killed me.
Late in the day, I lay in the bed, calming down and not feeling much of anything (the IV in my arm hurt no matter what), and being just between awake and asleep. I would snore with each exhale, even though I thought snores happened on inhales. And then after several breaths, I would stop breathing. I had to deliberately make myself breath again. I noted that even though I had the IV, with saline and antibiotics going into my left arm, there was no pulse monitor or anything monitoring my vital signs. If I did stop breathing, no one would know for hours. I wasn’t being checked up on very regularly.
But I didn’t die. At 10 pm, the nurse came in and got me up for a walk. We did one lap of the floor and I got back into bed. At 5 am, the catheter was removed and I went for another lap of the floor.
I got to go home that next day, after my surgeon saw me on another lap of the floor, that I was walking ok and alert. I really wanted to get out of the hospital. I was discharged around 11 am.
My friend picked me up and still offered her guest room to me, but I wanted to go home.
The pain moving around was terrible. I stayed in bed, but because of all of the saline in my system coming out, for the first day home I had to get out of bed and go pee often, about once an hour. I had to teach myself a new way to sit up, since just sitting up wasn’t working. Roll only my side, push myself up with my arms and grab the headboard to also pull myself up.
Five or six days of this, and I was finally able to just sit up. I moved out of the bed, onto the sofa. I was pretty mobile, but still had pain when I would bend down, like to pick something up from the floor.
I was given a prescription for some kind of opioid pain reliever, but I just used Advil. It only hurt when I moved, and I am not someone who enjoys feeling out of it. I spent several days in bed, just watching TV and movies. I had stocked up on frozen meals before the surgery, so I lived off of microwaved food.
It’s now a few months later and I’m moving around fine. No more pain. I did have hot flashes for a couple of months afterwards, but that has stopped. My doctor said it was a common symptom for people in recovery. As a cruel trick, I have the wounds from the laparoscopic attempt in addition to the big cut, so I have a direct comparison to what was and what could have been.
But it was the right choice. I feel so much better, and not just because I don’t have to worry about having an out-of-control period again. I have had migraine headaches for most of my like, sometimes as many as five a month. But I didn’t recall having many headaches since the surgery. So I marked February first and am happy to say I haven’t had a single headache, much less migraine, since then. I also have a lot more energy than before. The feeling that I need to go back to bed at 10am despite having just woken up at 8am is gone. If I have a nap now, I blame it more on pandemic conditions than on my physical state.
Ultimately, a lot of my health problems seem to have cleared up. They were all connected to my uterus. I wish I had skipped the UFE and gone straight for the hysterectomy, but how could I have known the UFE wouldn’t work? I couldn’t. I did the best I could with the available information. Hopefully by sharing this I’ll help someone else out there make a more informed decision about what will work best for them.
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