Sex, Chronic Illness, and Mental Health: Changing it up with PCOS and Endometriosis

There’s nothing we want to talk about more than sex and periods, right? Like I mentioned in the intro to the series- I felt more prepared for the diabetes when it came to sex- everything else? EH.

I’ll be up front about the diabetes all day long when it comes to communication regarding sex. PCOS and endometriosis? Well I’m still working on that. I’m also still trying to understand it all since it’s chaos and barely understood. (I’ve also come a long way when it comes to talking about periods… the social norms discouraging you to talk about it? Those were strong with me. I’ll talk about it in general. But when it comes to sex?

Sex, Chronic Illness, and Mental Health

Who wants to talk about that? Not me. The symptoms of PCOS and endometriosis do everything in their power to not make me feel sexy- so I’m already in a battle? Plus, there’s that worry I have.. What happens when I tell them all this stuff that might impact sex and there’s not a lot I can do about it.

In case you don’t stay for the whole post… (but you should!)-

Sex with PCOS and endometriosis? You gotta be willing to change it up.

Possible Disclaimer? Adult Content ahead! (Well maybe more the sitcoms where you aren’t sure about it? I’ll say it’s around TV-14 and PG-13- but hey- I don’t make the calls on how things go into this boxes). I am also not a medical provider, please consult with them!

There’s definitely some things that crossover from sex and diabetes. Soooo. A double whammy or a triple threat? Sometimes.

Where to start?

You never know for absolutely sure when you’re period is coming (for the most part)!

Before I went continuous, this was COMPLETELY TRUE. I never had any idea when it may or may not come. That made for a lot of fun for planning.

I have lost a lot of underwear to the period pile. Am I alone? Nah! It doesn’t just apply to PCOS and endometriosis either.

However, when I went on continuous birth control, the goal was no period. Does that happen? Nope. BUT. I do get a little more of a warning (day of)… so there can sometimes be last minute change of or cancelation of plans.

But as so many of us know…

Birth controls can impact sex drive.

Thanks medications and hormones. COOL. I’ve experienced a decreased sex drive on different birth controls several times, but I have also experienced an increased sex drive on one (that was an adventure). Right now- I’m at a sweet spot. FYI: IF YOUR SEX DRIVE IS IMPORTANT TO YOU, AND BIRTH CONTROL IS IMPACTING IT… TALK TO YOUR DOCTOR. YOU DON’T HAVE TO JUST ACCEPT IT!

In case you were wondering, sometimes with PCOS and endometriosis… I just don’t feel well at all.

And not feeling well outside of chronic illness and mental health, that can impact your desire or arousal too.

What am I getting at?

I sometimes am more exhausted for no reason besides these chronic illnesses.

With PCOS, I tend to just feel off and bloated and pain can just arrive without warning.

Pain during intercourse is one of the most common symptoms of endometriosis.

And… if you’re already in pain, sex can make it worse! Pain and discomfort can come later. It may be immediate or it may be delayed. Sometimes it’s what you think of when you think of pain- but sometimes? It’s just this discomfort feeling internally.

Yep. I’ll just pause for a moment to leave you with that.


So there’s all of the physical changes that sometimes make me feel less attractive.

(I do not want anyone on a soap box saying “this in my head” or “I can get past it”). LEMME STOP YOU RIGHT THERE. Some call this comorbidities with PCOS and endometriosis.

It’s what can be seen or not seen.

With PCOS there are these physical changes, bloating, acne, hair in places I don’t want it, hair on my head falling out easily, changes in my weight. Yeah. Sometimes (well often), how I feel about myself takes a hit (or hits). Body image? A major player with these two chronic illnesses.

I do take actions with this.

What I wear can help me feel more attractive and self-care. There are also things I can do that help me to feel more attractive. Sometimes? It’s just time.

There is one VERY specific thing that is of the utmost importance to me:

I DO NOT and WILL NOT rely on a partner to make me feel attractive or comfortable with myself. This has to be all on me. Why?

I don’t want to rely on anyone. At all. Especially when it comes to how I feel about myself (I know, I know- I hear some of you!) But- growing up I struggled with building healthy relationships with people in general. I’d either have too high of a wall or depend on them too much (sometimes too quickly). So I need to be aware that I have this tendency.

But mainly- it’s just important to me to love myself first. They say that makes sex better? I’d agree.

But then I’m thinking to myself, what if my period just shows up announced?

That worry can get in your head.

This can all just come together to make you not interested in sex at the moment. Even though this was already (for the most part) in my diabetes post, it applies here too:

Some things to keep in mind:

  • Don’t be ashamed of lubricant. Don’t let dryness cause pain.
  • As a female… time, communication, and knowing what you like works wonders. It makes for a better experience for everyone.
  • Always have pain medication on hand.
  • Get comfortable with yourself. All parts.
  • If you’re not feeling it (or feeling self-conscious), that’s okay. Don’t force it.
  • Be aware of external factors- not just the PCOS and endometriosis.
  • Remind yourself that even though something might have worked last time (such as position, time, setting, etc.) doesn’t mean it will always work.
  • Be prepared- and no- not ruin the moment kind of thing- you can be spontaneous- but overall if you’re always prepared- you’re prepared for spontaneity, right?
  • Try to relax. (I know, I know. Me saying this….)
  • Get help if you need it. Talking to your doctor about your feelings or issues can be helpful- maybe there is something else going- maybe therapy can help?
  • If you’re feeling off, be okay with saying not tonight or can we do something else.
  • We get the complications talks all the time… I know… well… sex is another thing to keep in mind.

And if you’re talking to or have a partner that isn’t understanding about what comes with PCOS and endometriosis to make sex possible and enjoyable (including but not limited to this list)… honestly… BYE.

I’m just going to leave this here-

Sexual dysfunction in patients with polycystic ovary syndrome and its affected domains

Results: The frequency of sexual dysfunction was verified 57.7% in PCOS patients with the domains of desire and arousal being commonly affected in 99.2% and 98.5%of cases respectively. BMI had a significant effect on sexual desire and arousal (p=0.02) while the effect of hirsutism was significant on all domains (p<0.001 for total FSFI score) except for dyspareunia.

Conclusion: PCOS patients markedly suffer from sexual dysfunction as comorbidity. It seems appropriate to screen all PCOS patients for sexual function with a simple short questionnaire such as FSFI. Targeted interventions could be considered to help improve their quality of life along with other treatments.

So if you’re not super interested in sex, this might add to the lack of interest.

But what if you are? How do you navigate it?

All of the communication.

Before. During. And. After. Even though I don’t want to talk about it, it makes for a better experience for everyone. I need to communicate. If you don’t tell them, though? Well ow.

But on top of that, you’ll need a partner who listens. Before. During. And. After. But seriously. They need to listen. If you’re in pain, tell them. If you think switching it up might help with arousal or stop the pain, tell them (or show them). But if you need to stop? Tell them. They need to stop. Doesn’t matter if it’s a one night stand or someone you’ve been with for a long time. They need to listen.

For the love of routines (doesn’t have to mean you can never be spontaneous.

Just like diabetes, routines and planning are my friends. It really does help. A TON.

Also… sadly… just like diabetes…It’s never the same.

Sometimes something works (once or for a long time), and it might not the next time- but maybe it won’t again. You have to be ready that. It’s disheartening when you feel like you’ve got it figured out, and your body goes…


And sure. A lot of this doesn’t sound great at all. Honestly, it’s not. But it doesn’t have to prevent sex ever. Sure, maybe it will get in the way? But that doesn’t mean sex is off the table for the rest of your life. Plus there’s some satisfaction that arrives when you figure out something that works for you.


Sex, Chronic Illness, and Mental Health: Changing it up with PCOS and Endometriosis


My goal is to be candid and honest in what I write. Not just about how to prepare because a lot of others have already covered that well. I’m just going to write what comes to mind- another plus that this is a series? I can revisit this topic. HOWEVER. If there is anything specific, I’d love to know! Contact me. Leave a comment. All of the above!

Sex, Chronic Illness, and Mental Health: the Series



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We’ll both be glad you did! -Mindy

2 thoughts on “Sex, Chronic Illness, and Mental Health: Changing it up with PCOS and Endometriosis

  1. Pingback: Sex, Chronic Illness, and Mental Health: is Diabetes Sexy? | There's More to the Story: a blog about LIFE, chronic illness, and Mental Health

  2. Pingback: Sex, Chronic Illness, and Mental Health: The Series! | There's More to the Story: a blog about LIFE, chronic illness, and Mental Health

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