Talking With My Doctor About Sex
Last updated: November 2023
In my experiences so far, I’ve only talked about sex with my rheumatologist as it relates to pregnancy. While it does matter, sometimes greatly, whether or not I’m planning a pregnancy because of the medications I take for my lupus, I think the conversation around autoimmune diseases and sex should extend beyond what kind of birth control I’m currently using.
If you have a chronic illness like lupus, I’d venture a guess that it affects your sex life in some way. But how many of us are talking about sex with our doctors?
Starting the conversation
I must admit, I started brainstorming this article months ago and I was determined to talk about how lupus affects my sex life at my next appointment. Well, I finally had that appointment yesterday and the closest we got was talking about menstrual cycles. I was not embarrassed and I didn’t forget. I didn’t get to it because I had things I urgently needed to discuss and they took up all the time. It's easier said than done when it comes to bringing the topic of sex into conversation.
But most of my discussion could have touched on my sex life. Severe chronic dryness from Sjögren’s? Yep, that’s an easy segue. Night sweats? Yep, I could have talked about how that affects my sleep environment and my sex life. There are so many examples out there. My knee joints haven’t been bothering me lately, but when they do, they can prevent me from using certain positions.
Integrating sex into my quality of life
I think it would help if more doctors than just my OBGYN saw sex as part of my quality of life. As the patient, it’s my job to bring up all sorts of things to my doctor when they need to be addressed. However, I do think that integrating sexual health into the system that’s already in place would make it easier to start.
For example, each time I go see my rheumatologist there’s an assessment that I fill out before heading into the exam room. The purpose is to get a general idea of how I’m doing. The doctor doesn’t typically look at the screening assessment, only the number that’s calculated from my answers.
One of the questions is, “Has your illness kept you from doing activities to the extent you’d like to?” I want to write in, yes, including having sex! Other questions include, can I get in and out of my car? Can I turn faucets on and off? Can I walk a mile on flat ground? Do I need additional treatments at this time? I think it would be easy to put a question in there to address sexual health.
My sexual perspective
Since sex is very personal and preferences/experiences vary wildly, I want to be clear that I’m only talking about my sex life in this section. I don’t want anyone to take these words as a generalization since your life and goals may be very different.
In my sex life, my current goal is to see sex as a good thing. Perhaps a necessary thing. One reason I have this goal is because chronic pain is the biggest reason why I turn down sex. Often, I find myself trying to decide if having sex is worth the effort because of my pain levels.
However, for me, sex is almost always relaxing and makes me feel better. So, I do want more of it in my life - with my supportive, understanding husband of nearly 10 years. It brings me closer to my husband and benefits our relationship. Most of the time it can reduce my pain at least a little. Since pain is my biggest sexual issue, it would make sense to talk to my doctors about how pain is interfering with my sex life.
Sex and healthcare
If sex is part of your life, then it should be part of your medical care. But, until it’s normalized in more doctor-patient relationships, it can be hard to start the conversation. To be honest, I didn’t think much about talking to my doctor about my sex life until a recent writing call where various advocates (patient leaders) discussed the topic. I realized that I needed a little push to decide it was important enough to talk to my doctor about it.
Starting the conversation will help doctors realize that checking in about sex as part of their patients’ lives would be beneficial. Sometimes, we have to be the change we want to see in order to make it happen. I hope I can start making that change where I need to.
Do you discuss your sex life with your doctor?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?