health · illness · sex

Sex and Trauma After Hysterectomy

CW: This post addresses trauma, flashbacks and PTSD, although it does not directly describe traumatic events. Sex and personal anatomy are referenced.

Six weeks after my hysterectomy, my gynecologist gave me the OK to return to all physical activities–including sex. And a few weeks after that, my husband and I found an opportunity to explore what that meant. I was eager to enjoy a regular sex life again. Before the surgery, while I hadn’t had any pain associated with intercourse specifically, I was afraid of potentially magnifying the pain I was already experiencing. I also felt increasingly alienated from my reproductive system as the months dragged on before the surgery–like my uterus and the surrounding architecture were fighting against me, forcing this mutant litter of fibroids upon me, despite my lifelong disinclination to ever becoming pregnant.

But instead of easing our way back into a regular sex life, I found myself heading into becoming frozen–stuck in place, nearly nonverbal, unresponsive as a possum hoping you won’t drive over it in the middle of the road. I managed to softly say, “no, no, no, no, no,” and everything stopped.

This was the first sign I had that something about the hysterectomy had been emotionally traumatic for me.

I recognized the feeling. My therapist and I had identified that I had many of the markers of PTSD long before the hysterectomy. I can be jumpy for no reason, startled by everyday noises. I can experience emotions disconnected from the present moment–overwhelming dread being the most common. I get heightened into fight or flight at the grocery store, or walking down the street, or driving, and have to work my way back down into my emotional window of tolerance. In these moments of panic or dread or rage, I know that they don’t make sense. I’m aware that they aren’t a true response to something in the present, but a ghost of terrible moments in the past.

But while I knew this about myself, I was not prepared for it to get worse with surgery. Nowhere did I read that this can be a risk, and it seems especially surprising given my past traumas are not sexual. Many of the resources I found as I prepared for the surgery mentioned that many women mourn the loss of their womb, that connection to motherhood in their bodies. I get that, but I wasn’t concerned about it for me. I have never wanted to be a mother, and I’ve always viewed my reproductive system as a sort of vestigial set of organs, that maybe protects my heart and definitely inconveniences me one week out of every month.

My surgeon knew of my PTSD symptoms as well–she got a firsthand look at them on our very first appointment. Her office is unfortunately located in a hospital associated with some of my past trauma, and from about two blocks away, through the entire hour-plus visit, and until I was able to leave, I was in a full-on panic attack flashback. I hyperventilated, found myself crying, and felt totally overwhelmed by the emotions flooding over me. Honestly, I felt completely ridiculous trying to explain to the nurses why I was so clearly struggling with self-control. For the next visit, they prescribed me some Xanax to take before I arrived.

Past traumas increase our risk of future trauma. Our nervous system remembers the feelings of threat, hopelessness, dread and loss of control. It is not a surprise that I was at increased risk of new trauma, but I am surprised that a procedure performed completely under anesthesia can result in trauma. According to my therapist, our bodies can remember what our conscious minds cannot. She equated it to the feelings you have when a tooth is extracted at the dentist–thanks to the novocaine, you don’t feel pain, but your body registers the pressure and physical trauma of the loss of a tooth. And so, apparently, my body registered the hysterectomy as a threat, and now I am finding myself urgently needing to protect myself from future perceived threats.

Now I am startled by simple, intimate experiences. I’ve had to ask my husband to ask permission before he reaches out to stroke my back or leans in for a kiss. Without the “warning,” I can’t breathe through my startle response and reorient to the present moment. Sex scares me. Even the thought of a nonsexual item like a tampon entering my vagina makes me feel anxious–my breathing becomes shallow, my heart starts to race. I am increasingly on edge, so much closer to fight-or-flight than I was before.

You might be asking yourself how common this is. In an admittedly cursory search, I didn’t find a lot of information, but this very recent study found 16.4% of participants experienced multiple symptoms of PTSD 2-3 months after hysterectomy. This older study from the Mayo clinic found a smaller, but robust, increase in the number of people showing signs of anxiety and depression after hysterectomy than compared to a similar population who had not had a hysterectomy. Now, neither of these studies can show us causation–does getting a hysterectomy make people more likely to develop these mental health concerns? Or is it that certain mental health conditions or predispositions make it more likely that someone gets a hysterectomy? Since we can’t do placebo hysterectomies on half of a cohort and then see if there’s a difference in prevalence of PTSD symptoms, I’m not sure how we can suss that out.

Regardless, I can’t help but believe that people would benefit from knowing about these risks in advance. At a minimum, people like me with a history of trauma could potentially work with their mental health professionals in advance to develop a treatment plan, should it be necessary. That is why I’ve decided to write about it, even though it feels very personal. It would be my hope that more patients and doctors can be aware of these risks and be encouraged to talk about them.

It has been a year since I first wrote about my hysterectomy here. At that time, all I was concerned about was my physical health and fitness afterwards–I wanted to stay as strong and physically resilient as I could as I healed. Those physical concerns are in the past now. I can lift however I want. I can run without pain. But I’m still dealing with the consequences of my hysterectomy, and I can’t help but wonder how long these new ghosts will haunt me.

Photo description: a pathway leading towards a sunset or sunrise.

Marjorie Hundtoft is a middle school science and health teacher. She can be found reorienting to the present, picking up heavy things and putting them back down again in Portland, Oregon.

14 thoughts on “Sex and Trauma After Hysterectomy

  1. Marjorie, This is such a vulnerable and tender and brave post. Thank you for writing it. Surgery is totally a risk for heightened trauma response. Our bodies are deeply invaded and we can’t predict how they will respond to that. Medical science isn’t really good at understanding the subtle possibilities of these things, or how deeply contextual they are for each person. Healing can continue. Just feeling lots of love for you.

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    1. Thank you, Susan, for the kind words and validation! My therapist is pretty nerdy about the neuroscience of trauma, but even with all we know, there is still so much we don’t!

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  2. An incredible post. My post surgical responses in the last 15 years have involved prolonged bouts of crying and a deep overwhelming sense of sadness without any specific root cause that I can identify. I’ve spoken to the anaesthetist about it and while sympathetic, they’ve not had any idea why I react like this. Your post has prompted me to think about the impact of buried trauma. Thank you.

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    1. The more I’ve learned about trauma, the more universal it seems. It is extraordinarily common. I hope you are able to find some answers so that you can begin to heal. Hugs!

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  3. Thanks so much for sharing your experiences with the blog and the blog community. I hope your post reaches those who haven’t been able to put words to this experience because you do it so beautifully.

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  4. I had a similar response. I was just getting over breast cancer treatment when I was diagnosed with endometrial cancer and had to have a hysterectomy. After I was healed from the surgery, I couldn’t even touch myself. I don’t currently have a sexual partner and I’m kind of relieved that I don’t have to worry about having sex, but I don’t know that I could ever be comfortable enough with anyone to have sex again. I’ve worked through most of my cancer treatment related issues (PTSD, dissociation) with a therapist. But there are lingering problems. I recommend a book called “The Body Keeps the Score.”

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    1. Thank you for sharing your experience! It’s always good to know you aren’t alone. 🙂
      I have read The Body Keeps the Score. I agree, it’s a great resource.

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  5. Such a courageous and soul-baring post! Makes me re-think my experiences post-surgeries as well. Thank you for sharing your experiences with this and I’m glad things have improved for you.

    Liked by 1 person

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