Realities of a Hysterectomy: What They Didn’t Prepare Me For

“Will there be any major complications?” I anxiously asked through the phone call with my then Gynaecologist. “No! This is a routine procedure, and because we are leaving your ovaries, there shouldn’t be any need for hormone replacement,” The Gynaecologist stated as she hurriedly answered my frantic questions, aiming to get off the phone call as quickly as possible. “But what could go wrong?” I asked, scared about losing the uterus that carried my three children in it, the uterus that has caused me pain since I was 12 years old. “There is a slight chance of bleeding too much, blood clots, and infection. But these are rare.” I sensed that she was done with this conversation, and I didn’t want to keep her from her busy schedule any longer for my anxiety riddled questions about a surgery that I wasn’t 100% about. Even with her rushed reassurances, I still had this nagging feeling that something wasn’t right. At that moment, I wish I had some look into the realities of a hysterectomy: what they didn’t prepare me for. If I had seen the whole picture, I could’ve chosen a different route that wouldn’t have left me with the horrific complications that I have today. 

How Popular Are Hysterectomies?

Approximately 600,000 hysterectomy procedures are performed yearly in the United States; hysterectomy rates in Canada were around 303 per 100,000 women in 2017. A study analyzing six European Countries shared that 11.4% of women reported undergoing a hysterectomy, with the highest percentage in Italy (15.5%) and the lowest in France (8.5%). With a high number of women undergoing such a “common” procedure, why is there not more information regarding the complications that can occur? 

A quick Google search reveals the common complications that can occur from a hysterectomy: 

• Bleeding: losing too much blood during or after surgery may require a blood transfusion. 
• Blood clots: blood clots can occur in the legs or lungs. 
• Infection: the surgical site can become severely infected. 
• Anesthesia Reactions: with any use of anesthesia, there can be bad reactions. 
• Damage to nearby organs, intestines, ureters, bladder, blood vessels or nerves. 
• Scar tissue formation, Hernia, pain, and vaginal cuff dehiscence.

Long-term complications of Hysterectomy include: 

• Early Menopause: this happens if the ovaries are removed; menopause can start earlier than expected, which can lead to symptoms like mood swings, insomnia and hot flashes.
• Osteoporosis: When you have a complete hysterectomy, the ovaries are removed. If this happens before the age of 40, there is a much greater risk of developing osteoporosis because of the decrease in estrogen. 

The What Ifs of a Hysterectomy are Scary.

When you’re about to undergo a hysterectomy, it’s all a blur. The pre-op appointments, the what-ifs, the rushed conversations with doctors who always have somewhere else to be. When they walk you through the potential “dangers,” skim over it like it’s absolutely nothing to consider because “it’s such a small percentage.” But what if you are the one who ends up with the complications? This isn’t meant to be anxiety-inducing but instead informing, because you deserve more than a rushed conversation with an overworked gynecologist or a frantic Google Search that leads you down a rabbit hole. 

Realities of a Hysterectomy: My Story 

In the days leading up to the hysterectomy, I had this never-ending feeling that I shouldn’t go through with it. Living with Endometriosis since the age of 12 and not being diagnosed until I was in my twenties, I was used to living with painful cramps, periods that were so heavy I would spend the first 4 days of my period vomiting, with a heating pad, and bleeding so heavy I would turn pale and weak. This pain was something that I had become used to; I learned to live my life around it. Even though I didn’t think having children was something I could do, my uterus, which had caused me so much pain, still managed to give me three children, which I am incredibly grateful for. My final two pregnancies were complicated, with a rare blood antigen issue, and my final pregnancy resulted in Severe Preeclampsia and my son born IUGR. 

Even with all the trauma, pain and complications this uterus had caused me through the years, it was still a part of me. It was still a place that held and crafted my three babies. I didn’t want to part with it. Still, I didn’t want to continue enduring countless “experimental” medical procedures, medical gaslighting, days of pain, what I would call “torture,” and complications like Ovarian Torsion. The pain was something I was used to; as horrible as it was, it was something I had learned to live with. But the medical procedures, the rushed appointments with a Gynaecologist who consistently medically gas-lit me, that was something I was ready to be done with. I convinced myself that this was the part of my story where I got to take control, where I wouldn’t have to be at the mercy of medical professionals who I felt were using me as a test subject. 

Was a Hysterectomy the Fix?

I eagerly wrote out my list of pros and cons, and the pros outweighed the cons. They were going to leave my ovaries, so the concerns about hormone complications didn’t seem valid. The other complications they quickly went over were such small percentages, and my gynecologist didn’t seem concerned, so why should I? 

The morning of my scheduled surgery, I felt such a heavy weight on my chest. Every part of my body was screaming, “No!” I continued to silence my anxious thoughts, reminding myself there was nothing to fear and that this would be the fix. 

I lay on the table in a sterile room, surrounded by strangers and a gynecologist who was eager to “get me done” and move on with her day. I felt fear shooting through my body. Tears started pouring out of my eyes as a nurse asked me if I was ok. I said, “I’m scared.” She assured me I would be fine and that she would take care of me; her words brought me no comfort. I heard the medical team saying fast words as I lay there in terror. Suddenly, a mask was placed on my face, and my arms and legs felt like they weighed 10,000 lbs. At that moment, I could feel everything in my body screaming, “No!” I wanted to rip the mask off my face and run out of the room when my mind went quickly to sleep. 

The Wake Up

Beep.. Beep.. Beep.. Beep.. The haunting sound I hated so much was jolting me back into consciousness. The pain started to flare up as I tried to calm my anxiety; the beeping always brings me back to when I was fighting for my life with Severe Preeclampsia. Was it over? Was my uterus gone? Was this nightmare finally finished? The nurse approached me and asked me how I was. “I’m hurting,” I said as I tried to rationalize all the feelings that my body was sending my mind at that moment. 

After transferring to another room, I asked if I could go home. The plan was the same-day surgery, in and out. Simple laparoscopic hysterectomy “through the belly button.” And then: home! The nurse responded with one more step to going home: “You have to empty your bladder.” Empty my bladder? That’s something I can manage.

I had never had an issue before, and I was more than certain that I must have some pee in there, even though I couldn’t feel it. I told the nurse that I could go to the bathroom right away. She looked relieved. I tried to climb out of bed alone but couldn’t manage. The nurses tried to help me scooch out of the bed. Nothing felt normal. But I assumed that was just because my body was trying to figure out what happened to it. When I finally reached the toilet, I waited for the pee, but it didn’t happen. The nurse checked on me, and I said, “I can’t pee. I think I’m dehydrated.” I hobbled my aching body back to the bed and laid down. I asked the nurse for some water because I assumed that was what I needed to urinate and get home. I drank water, then ginger ale, then more water. Trying so hard to get home. The nurse returned in; I said, “Hey, I think I can go to the bathroom.” The nurse looked frustrated as she helped me back to the bathroom. 

“Why Can’t I pee?”

As I sat on the toilet in agony, I tried everything to relieve my bladder. But nothing came out. At that moment, the pain overtook me as I threw up. The nurse looked angry; I could see she was annoyed. I didn’t want to upset her; I just wanted to go home. Finally, a tiny bit of urine came out, and I was so excited. I told the nurse, “I did it! I can go home.” She said, “I have to measure how much is left in your bladder before you can be cleared.” I said, “I just really want to go home to see my kids.” She looked at me like I was ruining her evening when she said, “You’ve already taken so long to wake up; everyone else has gone home, and you’re still here. I want to go home, too, but you have to pee first.” I felt terrible; I didn’t mean to ruin this nurse’s evening. I wanted to be home. Why couldn’t I do something simple like pee? 

“That’s a Fail”

Sure that I had emptied my bladder, I felt such agony as the nurse pressed the bladder scanner into my lower abdomen. “That’s a fail.” She said to me, coldly and harsh. “What?” I said in shock. “You failed. You didn’t empty your bladder.” I didn’t understand. “What does that mean?” I said, confused and concerned. “It means you’re going up to the floor for the night and not going home.” Overwhelm hit every part of my body; why couldn’t I pee? What was wrong with me? Within a few minutes, the nurse, who appeared mad at me for something I couldn’t control, spread my legs apart and shoved a catheter in my urethra. The pain shot through my body. Not only did I hate catheters, but I also battled major PTSD around catheters because the feeling brought me back to the horrific experience of Severe Preeclampsia. 

Within a few minutes, a porter pushed my bed to another floor, where they stuck me in a room. The nurse who came in had a much better attitude. I told her I was worried because I couldn’t pee, and I didn’t understand why this was happening. I stressed that I just wanted to go home. She reassured me that it was probably nothing; looking over my surgical report, she said, “It looks like they gave you a lot of medications to keep you sleeping. It’s no wonder you couldn’t wake up. Your bladder is probably just asleep. I’m sure you’ll pee in the morning and be on your way.” I felt reassured, maybe that’s all it was. 

Bladder Issues Persisted After the Hysterectomy.

The next morning, I felt a lot more alert and was sure I was on my road to home. The Gynaecology Resident who had “performed” my surgery came to see me. I asked her why this happened. Why couldn’t I pee? She replied with some random information about “nicking the bladder.” I didn’t know what she was talking about. But I hoped that didn’t mean anything serious. Shortly after, the main gynecologist entered my room. I asked her the same question, to which she replied, “The bladder can get traumatized during surgery. It just takes a little longer for it to wake up.” Alright, that seemed like an ok answer. So, my body just needs to wake up. 

Throughout that day, I was meant to go pee and not retain fluid. But with every pee there was more urine being held in the bladder every time they did the bladder scan. Overly frustrated at my body and riddled with pain, I had my husband go and get me a Grande Iced Chai Latte, surely that would encourage my bladder that it was time to get going. After a few more hours of trying to pee and having the bladder scanner pushed into my tender abdomen, the nurse said I had “reached the acceptable limit” and could go home. Finally! 

A Vaginal Hysterectomy?

The recovery at home didn’t go as planned; one morning, a couple of days later, I woke up in a puddle of blood. I was beyond confused as to why this was happening. The incision was through my belly button; why was I bleeding? My husband rushed me to an “urgent” appointment with an on-call OB at the hospital. They propped me up on the table, shoved the speculum up, and said, “Ah! You popped a stitch!” Popped a stitch? What were they talking about? I asked, “Popped a stitch? Like there was a stitch inside? Why?” The OB looked at me, puzzled, and said: “You have a vaginal hysterectomy.” “I did?” I said, shocked. “Yes.” “She said there would be three incisions on my abdomen, and they would take the uterus and fallopian tubes through my belly button. That’s all I was told.” The doctor looked at me like I was among the dumbest people on the planet and repeated. You had a vaginal hysterectomy.” 

How? How could that have happened? That was never mentioned to me. That’s why I had been so sore like I had just given birth. “We have to cauterize the area,” the OB stated. “What does that mean?” I asked in confusion. “That means we will make it stop bleeding where the stitch has popped.” “Will it hurt?” I asked, nervous. “No, it’s just a little discomfort.” I’d heard that lie before when a practicing resident had inserted an IUD into my vagina with no freezing, I walked around in agony for nearly two months with wicked amounts of bleeding, and they told me, “It shouldn’t hurt. It’s normal”… But after a follow-up for that appointment, it was deemed that the IUD had been hanging half out my uterus and punctured my uterine wall. 

Once again, I was told, “It shouldn’t hurt,” as I cringed in agony as they cauterized inside me with no freezing. 

In the days, weeks and months following my hysterectomy, I struggled to urinate; every day was a struggle. Sitting on the toilet trying to force urine out and having very unsuccessful attempts. Only little bits are coming out at a time. I continued to voice my concern to the Gynaecologist who performed the surgery and was told, “Set timers! You have to retrain your bladder to pee. This is normal”… It didn’t feel normal. I didn’t feel normal to have my abdomen swelling constantly; it didn’t feel normal to have gained 30lbs randomly since my hysterectomy within a couple of months. It didn’t seem normal to not have a sensation to pee or have to sit on the toilet and finally work out a pee that stopped midstream. Nothing seemed normal. But she was the expert; I was not. 

Finally, my Gynaecologist got tired of listening to me ask for help and sent me for urodynamic testing 7 months after the surgery. In just seven months, I had gained 30lbs, I had swollen hands, and I struggled to exercise because I felt like I would pass out. My abdomen ached and swelled, and a minimal amount of urine would come out. My blood pressure was elevated constantly, and my heart felt like it was continually skipping a beat. 

Urodynamic Testing Following a Hysterectomy

I got anxious before the testing because I knew it required catheterization, which still was something I was terrified of. Regardless, I went to the test with great hopes that this would give me the answers I needed. As I went through the urodynamic testing, I felt confident that I had actually “done a good job” peeing. Only to find out that I failed this test, too. What? How? The nurse looked at me and said, “You need to see your doctor ASAP.” She looked concerned. I called the doctor the following day and requested an appointment to discuss the results. They informed me there was no availability until September. I thought, ‘ok, well, it can’t be that serious! If they are waiting almost three months to see me.” 

I worked hard to get the weight off my body, assuming hormones were responsible for the rapid weight gain I was experiencing. I tried to get back to running, a pass-time that I loved. But it hurt. It felt like my abdomen weighed 10,000 lbs. And when I would run I felt like I couldn’t get air. What was wrong with me? Why was this happening?

“You have a Nurse’s Bladder”

September rolled around, and the day of meeting with the gynecologist finally arrived. I waited in the room for what seemed like forever. Then, there was a knock on the door as the gynecologist, who loved to ignore me, walked in. “I got the results from your urodynamic testing, and you have a nurse’s bladder,” she said like I was supposed to know what she was talking about. “A nurse’s bladder?” I said, confused by the wording. “Yes, it means you have an oversized bladder. Lots of nurses have it. It just means you can hold more urine than the normal bladder.” “Uh, ok? I just don’t understand is that why I have no sensation to pee anymore? Is that why I sit on the toilet, and nothing comes out?” She shrugged and stated, “You need to set timers for yourself and retrain your bladder.”

This… Again? We’d already gone over this… The timers, the “training” it doesn’t work! How can you train a broken faucet to fix itself? “How did this happen?” I asked, confused as I had never heard that I had an “oversized bladder” with all of my ultrasounds, MRIs, scans and such. How did this just happen? She responded, “It is probably something you were born with.” I responded, “I never had this issue before the surgery. How does this just happen?” She looked frustrated with my questioning and brushed my questions off with, “Set timers!” 

At that moment, I realized that I was done. I was done with asking questions. I was done with these pathetic appointments in which I got dismissed and medically gaslit. The hysterectomy was meant to be the step to get me away from these appointments. If the doctor said, “You’re fine,” then “I’m fine.” It was time to silence this nagging feeling that something was wrong. I nodded my head in agreement, and she wished me well as she walked out of the room. 

The next two months were like the ones before: I was hurting, Abdominal tenderness, swelling, and weight gain (even with all the exercise and lack of food). Timers, more timers, sitting on the toilet angry at myself for not being able to get pee out. 

When It All Came Crashing Down

At the end of those two months, my health took a drastic turn. I couldn’t get urine out. My lower back ached, I felt like I couldn’t breathe properly. I felt feverish and agonizing. One year after the hysterectomy, I was frustrated with myself for not being one of those women who “bounce back” and “have the best life once the uterus is gone.” Why couldn’t that be me? The more I dismissed these issues that I was experiencing, the more strong they became. Until the day I ended up with an on-call resident OB again. She found that my bladder was dangerously full.

The average bladder should hold anywhere from 400 – 600cc. Mine? Had over 2,000cc in it. I was told to “self-catheterize” but not given any tools or direction on how to do that. Within a few days, I was recalled back to my original Gynaecologist, who came into the room instantly, denying that this was happening. It was like she couldn’t believe the reports from the resident OB from a few days earlier. She had to see for herself. And see, she did. At that appointment, another 2,000cc was released from my bladder through a catheter. She looked shocked, disturbed, confused and upset. “I’ve never seen this happen before,” she said over and over. As I laid on the table, vulnerable, hurting, and crying. She exited the room, and I never saw her again.

 

I was referred to another Gynaecologist who specialized in urinary issues. She taught me how to self-cath, and it was her resident that caught the dangerous abscess in the wall between my urethra and vagina. An infection I had to be placed in the hospital for IV antibiotics to treat. My condition quickly went from bad to worse, and I was unable to self-catheterize anymore; I was given a Foley catheter and antibiotics after antibiotics. My world was falling apart. My health, my body, my family, I lost my job throughout this process, too. Everything I had worked for in life crumbled down around me. The chance of having an experimental “nerve” device to revive the nerves in the bladder was not an option for me anymore because of how enlarged my bladder had gotten from retaining so much fluid.

A Neurogenic Bladder After Hysterectomy

After living with a Foley catheter for four months, I met with a Urologist, who told me that he had gone over my medical records and wanted to apologize for what I had been put through. While he wasn’t responsible for what had happened to me, he felt that my treatment was unfair. He shared with me that what I was experiencing was known as a “Neurogenic Bladder” and can occur following abdominal surgery. He told me that I should’ve been treated as soon as I woke up with an inability to urinate.

Any doctor doing an abdominal surgery should be aware of these symptoms and what they mean. Instead of gaslighting me and making me feel like “it was in my head,” for over a year. I should’ve been treated and cared for as soon as the surgery occurred. This would’ve kept things from progressing, from the weight gain, the swelling, the agonizing pain, the overstretched and enlarged bladder that will never recover, and the damage that my kidneys have incurred. All of this was ignored and has now caused catastrophic effects on my health and life. 

Life With My Surpra-Pubic Catheter

I now sport a Supra-pubic catheter that comes with its own set of challenges, like back-to-back infections, antibiotic-resistant infections, painful catheter changes, blood clots, pain… I find it ironic that the surgery that was supposed to bring me relief and make it so I wouldn’t have to visit the doctors so much was, in fact, the surgery that caused a much worse problem with my health, and now my non-stop medical appointments and procedures. 

Learn More About What Happens When Your LIfe Takes a Painful Detour

Is it fair? No. Is there anything that can be done to reverse this damage? No. Do I feel like I have been treated unfairly? Yes. Will my life ever get back to the normal that it was? The life that I loved? No. This is my new reality. One that I’m learning each day how to accept. I didn’t just have to mourn the loss of my uterus with a hysterectomy, the loss of the ability to ever carry another child, but I was unfairly robbed of the life that I was living. Of my 6km runs, of my traveling with my family, of swimming in the lake in the summers with my kids, or sledding down the hill with my babies, of my job in Toronto. All of it was taken from me. And now, I have to learn how to navigate my future differently. 

Why I’m Sharing My Realities of a Hysterectomy?

As I write this, I hope not to scare you but to help you understand the realities of a hysterectomy. While it’s true, most people endure simple hysterectomies with no complications and a brighter quality of life. There are those, like me, whose lives are completely altered because of the mistake and neglect of someone you trusted your life with.

Maybe a hysterectomy is something that you absolutely must get; possibly, you’re reading this as someone with cancer who needs it removed. In that event, I want you to know that I’m not trying to sway you away from having a hysterectomy; rather, I want to stress to you the importance of advocating for your health and that YOU are important. A doctor should never rush you out of the room when you have unanswered questions. I want you to know that you should listen to your instincts, if your body is saying something is off. Your instincts are instincts for a reason. I want you to know what to look for following a hysterectomy and the complications that can occur so that you can advocate and get help before the damage is too much. 

Those With Painful Hysterectomy Complications Deserve to be Heard

Those “low percentages” of bad things happening as a result of a hysterectomy are still percentages representing people who have endured a medical trauma and must now navigate life completely differently. While we like to look at the big numbers and the “hope” that everything will be fine. We must not forget the people, like me, who don’t get to continue on with an enjoyable life. Who never get the relief from the pain. The ones who are now forced into horrific medical procedures and hospital stays. Just because we are the lower percentage, doesn’t mean our voices don’t deserve to be heard.

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