Photo by Justine Camacho / Unsplash

Between The Sheets: "I feel PMDD has neutered me"

Would you be able to cope with having the energy for sex only five days a month?

Welcome to Between The Sheets, a series where Melbourne-based journalist Simran Pasricha delves into the often-overlooked intersection between chronic illness and sexuality. From chronic pain to mental health disorders, this series is all about shining a spotlight on the challenges many individuals face when navigating intimacy and connection in the face of illness. 

For many women, the monthly rollercoaster ride of PMDD (Premenstrual Dysphoric Disorder) can throw a major curve ball into the realm of sex and relationships. In the first installment of Between The Sheets, we’re diving deep into how PMDD impacts your sex life and the dynamics of your relationship.

PMDD affects around 1.6% of women and girls, AKA 31 million women worldwide. PMDD isn't your run-of-the-mill PMS, it's like PMS on steroids -bringing with it a barrage of physical and emotional symptoms that can wreak havoc on your well-being. From intense mood swings and irritability, to physical discomfort and fatigue, PMDD doesn't discriminate when it comes to making its presence known.

It’s believed to be caused by an abnormal reaction to normal hormone changes that happen with each menstrual cycle, leading to a serotonin deficiency that affects mood and physical well-being. I got to speak to Jhanvi a reproductive health student from Melbourne who was diagnosed with PMDD in 2021, about how she feels her chronic illness has affected her intimate life. The first thing she said to me was, “I feel it has neutered me.”

“I would say I developed it at around the same time that I moved out of my parents' house, finished high school, moved to a new country and started uni, all of which are classic coming-of-age things.”

She adds, “As an Indian girl and a nerd, I was never involved with anyone in high school. I was never in any relationships or had sex. Those things came way later for me.”

As Jhanvi came into her own living in a new country, becoming financially independent, she was able to have the space to experience her sexual firsts. But she couldn’t help but notice that she wasn’t growing in all the ways she expected to.

“I still feel very, very young and inexperienced in sex and relationships. I feel almost left behind in a lot of ways when I hear my peers, my housemates, my friends talking about their experiences. ​​PMDD has left me playing catch-up for years.”

There’s no time for sex 

The menstrual cycle can be compared to the changing seasons, each phase affecting energy levels differently.

Spring, or the follicular phase, brings a surge of energy and vitality as estrogen levels rise. Summer, corresponding to ovulation, is a time of peak energy and heightened libido. The luteal phase, like autumn, can bring a dip in energy due to progesterone dominance, leading to mood changes and fatigue. Finally, the menstrual phase, resembling winter, may cause low energy and a desire for rest.

However, for those with PMDD, the cycle can feel like a perpetual winter, impacting energy levels and intimacy, as the emotional and physical symptoms dominate much of one's life.

Jhanvi says that for her it feels like she is in winter for at least three quarters of her cycle, meaning she has a tiny window of five to six days to get her life admin done. This includes replying to friends she left on read and completing the building pile of uni work.

“So when you're struggling so much just to kind of keep up the energy to go to work or to cook a meal, there is no part of me that's like, I wish I was having sex.”

When I broached the subject of masturbation, it was very much the same sentiment – just another thing on the to-do list. 

I can tell you firsthand that when it comes to chronic illness, it’s unlikely your doctor will believe you on your first inquiry. You have to come prepared, you have to advocate for yourself - and Jhanvi was no different. This means a LOT of research, and with her being a reproductive health student, Jhanvi is extremely in tune with her cycle and her hormones. Although it’s great for getting a doctor to listen, it’s not so great for getting you in the mood.

During your summer phase (ovulation) you have the highest amount of both sex hormones in your body AKA the most amount of estrogen and testosterone. Your hormones are getting your mind and body ready for sex. When you have PMDD it is essentially just having your body react really strongly to the levels of hormones in your body. “So because I have a really strong reaction to the hormones present in my luteal phase, it follows that I would have a strong reaction to the hormones present during ovulation. So yes I get feral.” 

But unfortunately PMDD turns that feeling into something “a bit cheap”. Jhanvi shares that she has to be in tune with her body because she knows her mood is dependent on her hormones.

“So, when I'm feeling awful and bad, self-conscious, or really angry or paranoid during my luteal phase, I can kind of reduce my own anxiety by saying, it's okay, it's just your hormones. But then, when I feel attraction to a person, or I feel any erotic feelings it really cheapens it, because then I have the same thought process where I'm like, it's not real, it's just your hormones.”

Of course, hormones play a part in attraction, but if they control your whole life, it can leave you yearning for an ounce of personal agency, especially when it comes to your intimate life and relationships. 

“It's quite frustrating, not just in like a sexual frustration way, but in a way that makes you feel like, God, I can't do anything.”  

Somehow, even after all of those considerations, Jhanvi is still very open to the idea of intimacy and wants a relationship in her life. However, she runs into another barrier, finding it hard to engage with the processes involved.

“With things like intimacy and relationships, I definitely do value getting to know somebody and having a longer period of talking to one another and maybe some sort of commitment. I don't think I can do that at all when half my month I just have to shut down things. I can't really even socialize with my friends, let alone form a deeper connection with a stranger that I'm trying to be intimate with.”  

“I'm thinking about making out. But instead of kissing and making out, I'm sending emails. I'm reading papers. If I don't do it now, I will not be doing it during my luteal phase.”

The light at the end of the tunnel looks different for everyone

When it comes to my and Jhanvi’s experiences, the picture that emerges is that there's no straightforward path to a more "normal" intimate life. Strangely, I find solace in that. Sometimes things are just shit and accepting the shit parts can help you free up space to nurture the good parts.

When it comes to chronic illness, we often set ourselves mythical standards in every aspect of life – what normal work should look like, normal sex, normal relationships. When you are told by doctors that there is no cure for what you have and you will never get better, it's hard not to think of yourself as somewhat broken.

This internalised ableism keeps us yearning for the life that we think we are supposed to have, hindering us from accepting and embracing the life that we do have.

Jhanvi said to me, “PMDD is the worst. And I hate that I have it, it is very difficult to find anything positive to say about the condition. But I will say that it has definitely forced me to be extremely aware of myself, my body and my actions.”

Like many a sexually frustrated brown teenage girl (including me), Jhanvi was boy crazy when she was in school.

“I was constantly thinking about crushes, like, movies with my shirtless heartthrobs. And then that carried over to when I started uni, and was meeting people, I was constantly thinking about dating prospects. And now I think I've realized those things were fruitless, because I never had the capacity to actually pursue a relationship. And now I think I've realized that consciously making the choice to not engage, until I figure my shit out, has taken something off my plate, which is so huge.”

Jhanvi is thankful that she now gets to take the time to readjust her goals according to what her body can and can’t do.

“PMDD has forced me to track how I really feel about things and has brought me closer to self-understanding, which is I think is probably the goal of life.”