Erin’s Hysterectomy Story
Type of Hysterectomy: daVinci Hysterectomy
Age at Hysterectomy: 24
Location: Oregon
My whole life, I never had regular menses. In high school they were pretty easy, no cramps, only bled a few days, no big deal. I used to get periods every 14 days, and over time, every other period got heavier and heavier. By the time I was in college, I was bleeding so much that I would become anaemic during my monthly cycle. I was put on estrogen to control the bleeding which worked, but later I was taken off estrogen; it turns out I’m at higher risk for developing blood clots.
As the years went on, my cycles became increasingly painful. I tried birth control pills, which made me throw up, and an IUD. I continued to worsen, so I went through a hysteroscopy and had the lining of my uterus removed. I was told my periods would get better after this, but they continued to get worse and worse. I started bleeding so heavily that I would soil myself within an hour even though I would wear both a maxi pad and a tampon.
Later I moved to Oregon, repeated several of these treatments, and went on progesterone. Progesterone made me feel dizzy and confused. Given the number of treatments I had tried, and my worsening condition, my doctor recommended hysterectomy.
By the time hysterectomy became an option for me, I could barely walk, was in constant pain, and couldn’t even lay on my side to sleep. I didn’t get a second opinion because I felt that I had run out of options. I had been suffering for six and a half years, and I thought I was just too young to have to face these health issues.
I had general anesthesia. I remember the mask going on my face, then waking up to a tube getting pulled out of my throat and my eyes getting un-taped. I remember my throat really hurting and I could barely talk. I stayed overnight in the maternity ward. It would have been nice, but my room was directly across the hallway from the stair case, so I listened to the doors opening and shutting all night long. I went home the next day.
The nurse kept giving me morphine. I just remember worrying about how expensive everything she was giving me was going to be. I had a lot of issues with insurance and the whole thing (around $30,000) got denied. The good news for me was the hospital didn’t get proper pre-approval, so after a year of stressing about how I was going to come up with the money, I found out I was not liable for the expense.
The money was a giant source of stress for me since my insurance company kept denying it. I didn’t have a diagnosis, and my doctor brushed it off as a “medical mystery.” During the surgery, she suspected I had adenomyosis, but after sending a sample to the lab it was found to be negative. She said my uterus was enlarged and spongey. I definitely believe it; I was going to the bathroom maybe several times an hour before the surgery and now I can actually hold it like everyone else. It felt like I had something squished up against my bladder, so it’s a giant relief not to have that going on any more.
I was up and walking hours after my surgery because I believed I would heal faster if I could be a little active. The nurses echoed this sentiment, so I pushed myself too hard. A few days after the surgery I walked nearly a mile to a convenience store. I’m not really sure what happened since I was on opiates for the pain, but I ended up on the ground and I had ripped my stitch a little. I panicked and called an ambulance, so I ended up both terrified and embarrassed.
The biggest issue I had, and continue to have, is the lack of emotional support following the hysterectomy. I’ve tried to reach out to my friends and I’ve been getting various responses. Most people tell me “oh you can adopt” and stop wanting to hear about it. Some of my other friends don’t understand why I would be upset about having a hysterectomy because I’ve always been more masculine. I feel like I get cornered having to explain and justify my feelings instead of being able to get the support I need. I hadn’t even been married a year before I had the surgery, I didn’t get the chance to have my own kids, or at the very least, consider the possibility. I’m in favor of adoption, but I feel a loss nonetheless.
I don’t remember how long my doctor gave me before I could resume normal activity, maybe 2 months or so since I am a weight lifter. It ended up taking me a lot longer because I constantly “overdid it” and didn’t allow my body to heal.
I told my doctor the hysterectomy gave me my life back, and it’s true. I could barely walk before the surgery, and now I’m back to my old self. I actually think I’m healthier. I regularly run over 4 miles at a time, go cycling, swimming, and hiking. I consider myself an active person, so it was a giant blow to lose my health so rapidly. I’m back into everything I enjoy, sex is no longer painful, and I don’t get cramps anymore. Health-wise, everything is 110%, but I still feel a loss. I’m glad I had a hysterectomy, but I wish I would have had a choice instead of being forced into a corner with deteriorating health.
I would say that there’s nothing more important than your health and happiness. Hysterectomy was a life saver for me, but be prepared for emotional hardship.
