Advocating for your Body in the Bedroom

by Lindsay DurrenbergerJuly 23, 2021View more posts from Lindsay Durrenberger

“Oh my God! Lindsay! We have to stop, I’m hurting you, you’re bleeding so much! I’m so sorry!”

This is never a good thing to hear, like, EVER, but especially not while you’re in the middle of a particularly exciting and enjoyable fuck. Concerned and horrified, my husband Dan leapt off of the bed and I looked down to see that he was right; there was blood, my blood, smeared on my inner thighs, on the sheets, and on him. This exchange happened just last week, a year after I completed treatment for stage III colorectal cancer. I burst into tears as I was swiftly yanked out of my fantasy in which my body is as it has always been (alluring, pleasurable, and, at its baseline, sexually functional) into my reality. My body is not as it always has been, and it will never be that way again.

Believe it or not, this is not the weirdest, grossest, or even most painful sexual experience I’ve had since my 2019 diagnosis, chemo, radiation, and surgeries. Since then, my sex life has been completely forever altered by the absolute hell my body underwent from during this time. It is so much different. New and alive, thankfully, but very, very different, especially sexually.

Any cancer patient will tell you that the first few oncology appointments you have are like drinking from a really traumatic firehose. There is so much information coming at your face, but you can hardly take it in because your cognitive functions are in survival mode. During one of those initial appointments, I remember my sweet oncologist, a kind, to-the-point, Indian man, bringing up the topic of sex, a phenomenon that, I have now since learned from my AYA cancer support group, is not actually all that common among AYA oncologists.

“Just to let you know, because of treatment, you may go into menopause. Your relations,” — this is how he refers to sex, by the way — “will likely become hard and painful because, due to pelvic radiation and the menopause, your vagina is going to shink.”

I blinked a few times.

“So, you will have to have relations a LOT to combat this.”

“Even though it will be painful? And I will feel like absolute shit?”

“Yes.”

Awesome.

Little did I know that the pain was going to be one of the least of my worries in the bedroom. Not only was having sex, something that once brought me joy and closeness with my husband, now extremely painful, but being that I was also receiving chemotherapy, I had zero energy. I was tired and nauseated all the time, not to mention that my chemo was the kind that you take home in a pack that is hooked up to your body at all times. Talk about a work hazard. And being menopausal in my early thirties wasn’t a picnic, either. My libido had disappeared, while a sprawling mountain range of hormonal acne consumed my face, arms, and chest. Sex was the absolute last human need to be met on my totem pole, and it fell by the wayside. As if that wasn’t enough, fast forward to my actual colon resection surgery that left me with a temporary ileostomy. For those of you not familiar with ostomies (I wasn’t until I had one, sadly), in layman’s terms, this means that I pooped out of my stomach and into a bag. The “conventionally sexy” body I had previously rocked was now beaten down and completely different. My self-image was completely shattered, along with my appetite and ability to eat too many fibrous foods. And then, neoadjuvant chemo started up, which was like being kicked while I was down.

To say it was a shit show is an understatement.

Suddenly, the body I once knew — the body that ran half marathons and excelled in dance classes and mastered a crow pose in yoga and tackled other bodies in rugby and sexually satisfied my husband and grew, birthed, and nursed two babies — was foreign to me in every sense of the word. It felt like, starting from the cancer diagnosis, my body had turned against me. And yet, somehow I was “supposed to” continue business as usual. Despite all of the trauma I was experiencing, both externally and internally, my future sex life depended on my ability to push through and suffer through sex when it was painful, awkward, and undesired.

Needless to say, it was a complete mindfuck. And not in the good way. I tried to combat this as best I could, from all angles.

At the suggestion of my OBGYN and my therapist, and some others in the AYA cancer community, I ordered a set of vaginal dilators to attempt to help stop the shrinking. There is absolutely NOTHING sexy about the process of using vaginal dilators, and as much as I was committed to the process (very, by the way), sadly, it didn’t really seem to help. I got some estrogen cream that was marginally helpful, so long as I wasn’t too tired or too sick to use it (which was more often than not).

To try and embrace my new body with an ileostomy, I texted a handful of close girlfriends and asked them to accompany me to the lingerie store to try and buy some cute get ups that would hide my ostomy bag. While I was moderately successful in finding pieces that “worked,” deep down I knew that shelling out the money for these negligees wasn’t going to piece together my now shattered self-image. Ostomy or not, cancer or not, “societally-approved body shape/size/color/whatever” or not, believing you are sexy is an inside job. And no amount of lingerie was going to be able to convince me that I was still attractive with an ostomy. I had to do the mental, emotional, and spiritual work to get there on my own.

And that caused me to be even more resentful of my situation. Doing the work? SERIOUSLY? I was already doing so much “work”! I was already trying to make it to all of my appointments on time, keep from vomiting from the chemo, regularly use dilators to try and keep my vagina from shrinking, drastically altering my diet so that my ileostomy wouldn’t get blocked (which happened once and landed me in the hospital for nine days hooked up to IV nutrition and an NG tube shoved up my nose and down to my stomach), maintaining upkeep of all of my ostomy products, trying to survive… all the while raising two kids and trying to maintain a marriage and a household… so the thought of having to do MORE work just felt like a lot to ask of me.

Too much, sometimes. And yet, I was committed.

Fast forward to today. Most of my hair has grown back. My ostomy is reversed. My port has been removed. Aside from the random bloody sexcapades, my sex life is probably better than it ever has been. If you are in my shoes wondering how I got to where I am today, I’ll share what drastically helped me out.

  1. Prioritize connecting with your partner in other ways. Sure, sex is great, but have you ever shared a belly laugh over a particularly niche meme that only the two of you understand? Seriously though. Being able to connect with my husband outside of the bedroom made our sexual encounters so much richer and fulfilling. It also provided me with a safe space to express what I was comfortable with during treatment and what made me feel great and what USED to make me feel great but was now painful.
  2. Therapy, therapy, therapy. I cannot stress this enough. Any human that has been alive on this broken planet longer than five minutes could benefit from therapy; throw cancer into the mix and good grief.
  3. Don’t be afraid to bring it up with your doctors. I’m grateful that my oncologist was forthcoming (oops, pun not intended but welcomed) with the sexual side effects of my treatment so that I could get access to the hormone therapy and learn practical skills to help.
  4. Find people who get it. If you’re an AYA cancer patient and aren’t in a support group, let me know. I can connect you to a great digital one where you can connect with people who are navigating the same things you are — sexuality being one of them — and who also happen to have this stupid disease. Without my support groups, I don’t know what would have happened to my sex life during and post cancer treatment.

To sum up, cancer or no cancer, you are your body’s best advocate, both in and outside of the bedroom. Prioritize your wants and your needs — even if those wants and needs are non-existent for a time — and communicate them. You are a whole person, and you deserve to feel good, no matter what you’re going through.

Want to hear Lindsay read this post? Click here to sign up for Perkatory on Thursday, July 29 at 7:00pm ET!

Join the Conversation!

Leave a comment below. Remember to keep it positive!

Leave a Reply

Your email address will not be published. Required fields are marked *