Countdown To Hysterectomy
The countdown begins!
Not a Christmas countdown, but my hysterectomy countdown.
Really quick I want to clarify a commonly asked question and one I did not know at first! I am having a total hysterectomy which means removing the uterus and cervix. This does not include the ovaries. A partial hysterectomy is removing just the uterus, leaving the cervix. A radical hysterectomy is when the uterus, cervix, ovaries, and fallopian tubes are removed. This will mean hormone therapy, and will trigger menopause symptoms (which I won’t be going through). However, even with my ovaries I will still ovulate and therefore still have PMS/PMDD.. yay.
Back to it..
I have gone back and forth with my emotions around this surgery. I will not regret it, but it does not make it easier. I get so excited about my surgery date, but I have had moments of “weakness” where I would cry over the thought of never being pregnant. It does feel like a loss, because it is. However, what I will gain will be worth so much more. I will be healthier, happier, and my body will not limit me as it has.
Earlier this month, I had the worst flare-up of my life. Yes it began with a period, but it was so much more than that. A massive ache in my pelvis and groin that traveled to my ankles, clots, nausea. I assumed it would only last 2 days or so. I had a virtual therapy appointment and I could not talk much because I was so nauseous. I spent the session in my bed. The next day I saw my mom who told me I looked really pale. Still, I went to NYC for the weekend to visit my girlfriend Aly. Though she told me I did not have to come if I was not well, I wanted to because we can’t always see each other at a distance. I regretted going, but not because of her. My pain did not get better, it only seemed to get worse. I hardly slept each night. I had a headache, neck pain, back pain, stomach pain, leg pain- I think just about every part of me hurt. I also was hot when Aly was cold. I felt feverish. I had a bag of ice behind my head, a heating pad on my stomach, I could barely eat, and I was so sick. I think I cried every day. Correction, I know I cried every day. Aly has certainly seen me at my worst, but I am so grateful for her staying by my side. I had taken so much tylenol knowing it never helps, but not knowing what else to do. High strength CBD lotion hardly helped as well. I was crying awake at 2am come that Monday morning, and by 4am I was sitting on her bathroom floor still in tears, a warm forehead, and in the worst pain I have ever felt.
4am.. in New York City.. we were walking to the hospital. I have been to the ER before during really bad flares, and usually there is nothing they can do. When pain is invisible it is even harder to be taken seriously. I just felt safer being checked out since I felt so nauseous and feverish. In my support group, whenever somebody debates going to the ER, someone always reminds us that it does not hurt to go in case there is a rare chance something IS really wrong or a cyst burst, etc. It was a horrible experience. The nurses confessed to being short-staffed, but nobody had checked on me for several hours. At one point I was moved into the hallway and I was not sure if I was crying from the pain, my anxiety, or both. I was hysterical in fetal position, and panicking that I could hardly breathe with my mask on. I was relieved they gave me fluids, and pain medicine through the IV. I think the only reason they took me seriously was because I told them I was having an upcoming hysterectomy for endometriosis and adenomyosis. In the past, they would not give me anything stronger than tylenol. I have had scans come back normal and once was asked by an ER nurse in Boston, “Are you sure you don’t just have to poop?” It feels dehumanizing and nobody understands the pain unless they experience it for themselves. I think I would have preferred a broken bone.
We were there for 7 hours or so, and I felt horrible I kept Aly there with me. I called my OBGYN’s office but they could not give me medical advice out of state. I was told to just trust the doctors and advocate for myself. By the time we left, I had asked to be discharged. They asked, “are you sure?” They offered more pain medication but at that point we had been there all day and tired of waiting for a doctor. I was so sleep deprived I just wanted to go home. I sobbed because I just wanted my own bed and to be close to my doctors, but I was afraid to get on a train with how I was feeling. My parents were traveling, so I called my grandmother who was ready to meet me at the train station in Connecticut . She planned to come with my grandfather so he could drive my car back for me from the garage. I felt horrible, but instead of napping after the day at the ER we hurried ourselves to Grand Central station. On the train I held it together for the 2 hour ride. I closed my eyes and listened to Taylor Swift. I think it helped my anxiety, because I know all of the words to her songs. It was comforting, and took my mind away from my worries because I could focus on the lyrics. I reclined in my grandma’s car, with my grandpa following in my car. I wrapped myself in a blanket. I was so thankful to be back in my own bed that night, but that week I felt like I was still recovering from the flare. I believe I told my therapist that I felt I was recovering from a car accident.
The bright side, if there was one, was that I no longer had any negative feelings about the hysterectomy. I only had fear that I would go through that amount of pain again. My doctor said that weirdly that happens where her patients get their worst flare-up right before their surgery. I remember standing in the shower with my hand over where my uterus was pulsing at me, and I was talking to it. More like pleading. “I know. I know you’re mad. Please, please hang in there. We are almost there. I know you hurt, I know. But please hang in there.” I just cried and let the hot water overwhelm me.
Here are some items I have prepared for post-surgery so far:
an abdominal binder
compression socks
a coloring book (with positive quotes because I’m prepared for a mood drop)
a lap desk
a Verilux “happy light” (for seasonal depression)
the medicines I’ll need
HBO Max- I got a subscription which will keep me occupied when fatigued
I had my pre-op appointment and I was relieved to hear that this surgery has fewer risks than my endometriosis excision. It makes sense, because with the excision they are going around or tackling other major organs. My silly mother asked my surgeon if I will be OK alone that first night home, and assured her she lived only 10-15 minutes from me. I had to remind her that a) I have a roommate, and b) I recovered without her after my heart ablation so I should be okay after a hysterectomy haha. I can feel my mother’s anxiety. I told her that I think I’m handling this better than she is and she told me that she would prefer it that way. Still, it’s hard because I do not want anyone to feel sorry for me. I still see kiddos in my future!
The week of my surgery (Dec 16) I also have a tele-health consult with a fertility doctor to discuss egg freezing. All of this is very soon to discuss in my relationship with my girlfriend, but it’s prompted a lot of good, genuine conversations between us. She has been a great support and listening ear. I’m so very grateful.
My biggest fear is that after my endometriosis surgery in 2019, I went into a deep depression around 4 or 5 weeks post-op. My thyroid levels dropped (I have hashimoto’s disease), and I was also hospitalized for my mental health come 6 weeks post-op. At least this time I can prepare myself for any mood shifts. Even though my hormones won’t be affected much, they still can be. I have clinical depression, so I am at greater risk. What I can remind myself is that this time I am in therapy twice a week. My psychiatrist is always there when I need her, and if I need medication adjustments she will be right on it. I also live with my best friend, and I know her company will be much appreciated. If the tears/emotions do overwhelm me, I am going to remind myself it is normal, I am safe, my body is healing, and it will pass.
23 more days..
I can do this!
