Learning to adjust my sex life with lupus

When Suzanne S was diagnosed with lupus, pain-free sex seemed impossible. Over time, she learned how to make adjustments that made sex fun again

Three years ago, I was diagnosed with lupus, a chronic autoimmune illness, that pretty much turned my life around. While most aspects of my life became more difficult — even everyday stuff like bathing and climbing stairs – the illness also completely changed my sex life.

Even before my diagnosis, my fatigue was debilitating. Every morning I’d wake up with an incredibly strong urge to just go back to sleep; I would wheeze like an asthmatic patient after climbing a short flight of stairs. And then, suddenly, I stopped having even the slightest desire to have sex with my then-partner.

When we did have sex, my hips and knees would feel weak, and my vagina would become dry very quickly.

Nine doctors and numerous hospital visits later, I was diagnosed with lupus, an incurable condition in which my own immune system destroys the healthy cells in my body. I was also plagued with secondary illnesses like anaemia, diabetes, myalgia (muscle aches), and joint pains. I was pumped with very aggressive medication – high dosage steroids, chemotherapy, antimalarials, diuretics, vitamin and iron infusions.

I thought I was doomed to have painful sex for the rest of my life. I wondered if the marginal pleasure I was getting was really worth all that pain

Over time, my lupus got more stable. My medication was tapered down, and I felt pretty normal again. However, my sex life was now fraught with extreme pain during penetration, an inability to sustain natural vaginal lubrication during sex, and sometimes I’d be unable to get wet at all even though I was really turned on.

Plus, my hips and knees were a disaster in bed. I couldn’t remain in particular positions for too long because of the body aches and my mind would constantly wander – I thought about how pathetic I felt, while hoping that my partner wouldn’t notice my discomfort. To make things worse, the soreness would also last for a few days after sex.

I thought I was doomed to have painful sex for the rest of my life. I wondered if the marginal pleasure I was getting was really worth all that pain.

A couple of months ago, I got into a new relationship. While we had wonderful chemistry, I still struggled to tell my boyfriend that sex was painful for me. I was afraid that I’d come across as undesirable, or that I might dampen the spark between us.

The first time we used lube, the sex was so good, it felt like a spiritual awakening

I brought it up in conversation one day. As nervous as I was, it felt incredibly good to finally talk about it. In fact, addressing it helped us to develop a deeper sense of intimacy with each other – I felt assured that I deserved to feel complete pleasure.

We then tried to find ways of having sex that would help me feel better. We discovered that lubricants were the answer to pain during penetration – the first time we used lube, the sex was so good, it felt like a spiritual awakening.

We also discovered that small changes to the way a room was arranged, like turning off the fan while having sex, helped me to stay wet for longer. We explored more sex positions, and even came up with new ones that we hadn’t heard or seen before, that felt right for our bodies.

Around the same time, I felt more comfortable talking about my sexual health and felt safer with doctors as well. I learned that it’s actually very common for people with lupus to experience difficulties having sex — knowledge that certainly made me feel less abnormal but also disheartened. I imagine many others with lupus probably feel, or felt at some point, that they would never enjoy sex again.

But there are indeed many solutions that medical professionals can offer – and ones that we ourselves can discover, just like I did when figuring out how to arrange my room to make sex more comfortable.

I believe that it all starts with accepting that an autoimmune disease like lupus can change us intrinsically, including how we experience sex. But it certainly doesn’t have to rob us of all pleasure. And the way forward is open communication with our healthcare provider(s), our partner(s), and the conviction that we absolutely do deserve wonderful orgasms.
 
 
Featured image is a line illustration of a person’s legs and lower torso, as if reclining on a bed. A desk fan is facing them that has been turned off
 
 
Page last updated September 2021

Suzanne S

Suzanne is a 25 year old lupus patient advocate. She’s a published writer and freelance journalist who is very passionate about lupus awareness and strongly advocates for early diagnosis.

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