EPISODE 26: Navigating the Landscape of Sex and Intimacy
- autoimmunesisterho
- Feb 10
- 16 min read
ALYSIA: Welcome back to Autoimmune Adventures. Today we will be talking about sex, libido, and autoimmunity, just in time for Valentine's Day. Please be aware that although we will not be getting graphic, we will be talking candidly about this topic and want to let you know that before we jump in. We know everyone has different personal standards of morality regarding sex, and we'll try our best to be sensitive to that.
So before we jump in, let's have our good bit minute. Dr. Logan Lepkoff, a sexuality and relationship expert from New York City, tells us that there has been real evidence that the endorphin release from orgasm can alleviate migraines and help people to manage chronic pain in general. This is because endorphins block pain while enhancing the parts of our brain responsible for pleasure.
But the feel good train doesn't stop there. Oxytocin, which is a bonding hormone that increases when we hug and have orgasms, can also have pain killing effects, according to a report by researchers from the University of Alabama at Birmingham. With that in mind, let's talk about how this information can be used in our lives as we are battling autoimmunity.
STACY: What we need to remember is that sexuality and chronic illness is really an overlooked topic, and it's not something that is talked about. The truth is that autoimmune disease and sometimes it's treatments can often have a truly negative effect on one's sexual function and libido. So in this episode, we hope to not just shed light on some of the connections, but also normalize the conversation about sex and our health.
It's really important for us to understand that just because we have these problems doesn't mean we are not able to have good sex lives. We just have to be aware of our body's needs. So while we understand that not everyone is in a partnered relationship, we're going to discuss this from that perspective for the ease of explanation.
We hope that if you're single or in other relationship structures, That you will still find this information relevant and helpful because we want to encourage you to consider how this information might apply to your own situation, whatever it may be.
BECKY: So first, let's talk about how autoimmunity can impact your sexual health. All three of us spend a lot of time on the forums. And we have talked to a lot of different people and this is a struggle for a lot of people with autoimmunity. One of these challenges is that some of us get hormone imbalances. That's a very common thing with autoimmune diseases. And your sex hormones aren't always in the optimal range.
Your libido can suffer, especially for men. They can have erectile dysfunction if they have low T. It is imperative that you have your hormone levels checked to make sure that they're where they're supposed to be. There's a lot of good options for hormone replacement therapy, both synthetics as well as natural options.
So consult with your doctors. That is actually a good thing that is something that often can be remedied if that's the reason that you're having trouble with your sex life. This is the first and possibly the most impactful step to take to work towards improving your sex life. Along with the hormone imbalances that come along as a natural part of our autoimmune problems, there's also the fact that a lot of the medications we take that are used to treat autoimmune diseases can also impact those hormones.
For example, cortisosteroids can suppress our body's natural hormone production, which leads to, as you guessed it, decreased libido. Of course, the hallmark of autoimmune disease, which is inflammation, also disrupts the delicate balance of our hormones. It can interfere with the production, transport and function of our sex hormones like estrogen, testosterone and progesterone.
So we kind of have three or four things that come at us as a natural part of having autoimmune disease that makes this challenging. And that's why it's so important to be aware of it.
ALYSIA: Yeah. I think also a lot of us with autoimmune conditions have mental health issues and I think mental health medications are notorious for this problem, like for killing libido, erection, ability to orgasm, all of that.
So if you're on any of those medications, I would suggest that you talk to your doctor and it takes a little work, but there are things to be done. Aside from the hormonal situation, there's also a couple of easier things to identify that I think are our excuses. That's going to be our chronic pain. And our chronic fatigue.
Those are no joke with autoimmune disease. So it can make having an active sex life extremely difficult. And I know for some people it's nearly impossible for them. It takes physical effort to have sex. And sometimes our power bar levels are not sufficient for the kind of sexual encounters that we or our partner really want.
And it can be really frustrating. Last but not least, we've got to talk about the psychological factors that affect our sex life, our sex drive, our intimacy. Living with chronic illness can take a real toll on our mental health, as we just talked about. Depression, anxiety, low self esteem, those things are not super helpful in creating a healthy sex life. So I know you've all had a day like you've slept like garbage the night before you've been running to the bathroom because you maybe ate something wrong. You have random muscle cramps in your legs and your eyes are dry and bloodshot and you've had a crap day at work and your mobility is terrible because there's some weird weather fluctuation and you're flaring and your whole day just seems like crap.
And when you finally get in bed and you lay down at the end of the day next to your partner, it's really, really hard to feel sexy. It's really hard to put yourself in a state of mind where you are open to being sexual with your partner. So we know that. We understand. We have all been there, and I think this is where we have to be extremely sensitive to our partners.
It's not easy being married to somebody who is struggling with these things. And I think it's fair to say that of all of the ways that autoimmune disease challenges our relationships with our partners, sexuality is one that takes a major hit and nobody talks about it. So we're going to. If you have a dead bedroom because your disease has taken the reins in your life, we want you to know that there's hope.
Your partner probably needs to know that as well. We know. that sex is not a basic physiological need like food or water is, but it is a biological drive, and the benefits of healthy sexuality are too many to list. So let's get into some of the fun ways that you can get your sexy on and bring a little fun back into your bedroom.
BECKY: You have to believe that things can get better. You have to want them to, and you have to take responsibility for doing your part to make it happen. That means communicating with your partner. Both got to be on board. You've got to identify what your particular issues are because not everybody's going to have the same ones and make a plan on how you're going to address them.
You have to have that honest and open communication around the subject. and work on it. And I will tell you right now, if you have a partner who is really on board with you, they're going to understand if you're open. But you have to be vulnerable. You have to be open with them. I was talking to my sisters earlier. I had two knee replacements this last year. You cannot have traditional sex right after a knee replacement. That is just not a thing. And so you've got to get creative, and fortunately, I have a very loving and kind husband who is very good at communicating with me and making sure I'm okay and making sure that I'm not in pain.
And you come up with different creative ways to help each other out. But the key is you have to have that open conversation. And we'll provide a link for it; there is a great book called "Crucial Conversations," because...it's usually considered like a business book, but it is important for even marital relationships to be able to have those hard conversations.
I know people that have been married for years that sometimes aren't comfortable having that, but you need to be willing to say, hey, this feels good or this doesn't feel good. And you have to not be afraid to share your thoughts with your partner about that. You have to be willing to say, I've been wanting to talk to you about this. This is something. I know is a problem. I'm going to be really vulnerable with you for a moment. Can we please share some thoughts? Just a tip, do not have this conversation late at night or when you're both really exhausted, when it's easy for people to get defensive or upset about things. Don't try to put the blame on any one person.
Follow through on this conversation too. You recognize that sex is going to take some of your energy bar. As we've talked about, the science suggests that it also gives back to your energy bar. So keep that in mind when you're willing to put in, you're going to get some good things out of it as well.
Save some energy for the person that you love the most. If you plan to go to bed early so that you can get better rested, make it happen. If you need to go get your hormones level checked like we talked about, make that happen. Take that visit to your doctor. If you want to buy something to make yourself feel a little more sexy, go out and buy that lingerie, go out and buy whatever toys, fun things, make it happen. Satin sheets, whatever. You have to be intentional about what you're going to do. And I know that a lot of people are always like, "I like to be in the moment. I like my sex life to be impromptu and spontaneous," and that's wonderful, and there are going to be days where that's going to be an option for you, but with those of us with autoimmune disease, it really has to be more intentional. And that is an important conversation that you need to have with your partner.
ALYSIA: And have a sense of humor about it, guys. If it's a tender subject with you and your partner, maybe be a little more sensitive, but it can also be fun and silly and sensitive if you're careful about how you have that conversation.
STACY: If you have the kind of relationship where humor is part of the connection that you have with one another, I think that really makes this easier, but not everyone has that. Not everyone has the kind of relationship with their partner where they can have a good laugh together. So you have to take into account the person that you are spending your life with, having your sexuality with, and make sure that you're giving them the information they need for you to both have an enjoyable time together, because if your partner doesn't know what you need, it's not their fault if you're not getting it.
BECKY: Another important thing to remember is part of the reason we want to keep communication open. is people have trauma or abuse sometimes in their past. It is so important when people have had that. Sometimes they have a very unhealthy, completely out of their control, but unhealthy view on what sex should or shouldn't be like. And you need to have a very honest conversation about that for your intimacy to be where it should be as partners. And so I would say the number one thing, it's so good to have all the good things in sex, but the number one thing with being intimate with your partner is to have open communication lines.
ALYSIA: If roles were reversed, and it were your partner who had the illness, and this was affecting your sex life, and they came to you with that conversation, that would mean a lot to me. They just want to know that you want to connect with them. You want to be intimate with them. You want to have a sex life with them.
STACY: I think what we're trying to say here is that there are alternate ways to be intimate on those days when sex is not on the table because let's just be honest here, friends, there are days when the fatigue and pain are just too much. Don't let that stop you from spending quality time, whether it's cuddling, holding hands, caressing each other.
I'm a big believer in skinship. Take all your clothes off. And lay there together and just hold each other. Explore different types of kisses and touching, back rubs, foot massage, skin to skin contact. It should never be underestimated. The things it does for our hormones and for our autonomic systems, the things that help us run our lives are profound. That skin to skin contact calms the body down. It lets you know you're safe. And so much of what makes intimacy powerful is that feeling of safety. Now with that said, you can still have a whole lot of fun together. Handjobs are a great way. Oral sex is fantastic for this. Toys are a really great option, because all of these are a more gentle approach. And if that's what your body needs that day, that's fine.
And if you don't have some good toys and good lube, I'm here to tell you they are a very worthy investment, and they can be incredibly helpful, especially for women in reaching orgasm. If your man feels threatened or emasculated by you bringing a toy into the mix, you need to help him understand. Educate him a little. Toys are actually his teammate. They're not his enemy. Toys can be a gentle way to help you orgasm, and he's not gonna complain when that happens.
BECKY: And really, like she was saying, don't underestimate lube. There are a lot of autoimmune diseases that actually cause women especially to be more dry. Lube, it will help you so much. So much less pain.
ALYSIA: Spend the money on getting quality lube. Some of the cheap lubes out there are made from some really toxic ingredients. Just spend a little more and get something that's going to be really like body safe for you.
STACY: Lube for me has been an experience of fire and pain. I have learned that if you do not spend the money for a good lube, if you get something that smells pretty or tastes great, that can sometimes lead to an infection, or you feeling like your girl parts are on fire, neither of which is an experience you want to have.
BECKY: Yeah, we were actually kind of discussing this as we were getting this together, this podcast together, and we were talking about that again, a lot of people with autoimmune problems also have allergies. If you do, don't risk it. There's some out there that sound great, like the 'his and hers,' or like Stacy was saying, the scented ones, or the ones that taste good, whatever it is. But if you have any kind of allergies, just don't do that to yourself.
STACY: There are wonderful things that you can eat that will naturally make your body feel better for sex, and I'm telling you, all you have to google is best foods for sex. It's going to tell you the pineapple is great. It cleans everything up, makes you smell good, those kinds of things. So there's a lot of things that you can do to make yourself less self conscious without having to get some scented unhealthy thing to stick in your lady parts so that you feel okay with the way you smell.
ALYSIA: And we would love to get into all of those, but we don't have time for that. So, what we really suggest is doing your own research. I follow several sex therapists on social media, and they are incredibly helpful with toy recommendations, lube recommendations, relationship advice. All kinds of extremely helpful things to educate yourself. Stuff that I just did not know growing up that is so helpful for this. Find some people. I would list mine, but there are too many to give a shout out to any one or two. You find somebody who identifies with your personal standards, or a few people. Read some books. Like, I don't want to say 'prude' like it's bad, but don't be a prude about sex.
You are a sexual being whether you like it or not. We're living in these bodies with autoimmune disease. We may as well enjoy some of the perks of the body and one of them is sex.
STACY: I would agree. So do your research, but let's for just a minute talk about the magic of orgasm because I think this is important thing.
If we take a look at the benefits of reaching the big O, I think you'll understand why We've taken the time to put together an episode. The physical benefits of orgasm include things like pain relief, and we can really use that, ladies and gentlemen, that's important for us. It improves sleep. It boosts your immune system. Another big plus. It includes improved heart health, and it strengthens your pelvic floor muscles, and for some of us girls in perimenopause and beyond, that is a huge benefit.
So there's a lot of physical benefits, but there's also mental and emotional benefits. It lowers stress, it boosts our mood, it increases our self esteem, anxiety is reduced. It improves focus, because the hormones that flow through our body when we have orgasm, clarify our minds. And of course it improves intimacy with our partner, which is great because who doesn't want that?
ALYSIA: We know that the benefits of a good sex life and specifically orgasms are extremely helpful, but some of us might have some mental holdups. When I say mental holdups, I'm talking about things like feelings of shame or feelings that are negatively influenced by our societal norms. and expectations. Or maybe you are from an older generation and you were raised differently. Maybe you were raised in a purity culture and you need to educate yourself about your own sexuality.
If any of those apply to you, do your best to let that stuff go. It's not going to be helpful in creating a healthy sex life and owning your sexuality. We understand that that is easier said than done, and it can take years to actually do, so start educating yourself now on what healthy sexuality means to you.
And find yourself a good therapist, because sometimes you're gonna need somebody to help you work through this stuff. Read books, listen to podcasts, watch documentaries, talk with trusted friends, or your therapist if you already have one. I really, really recommend a website called OMGYES.com. It is designed for women, although men would find it helpful as well if you have a female partner.
But it is a very tasteful collection of interviews and information all about women's sexuality. I love the way it's put together. It is a wealth of knowledge and it is beautifully done. There's nothing crude about it. It is very clean and professional. So you don't know what you don't know until you start learning about sex.
I would also note that sexuality in our culture and in our media is often portrayed in a lot of extreme ways. I'm going to suggest that you minimize those influences as best you can and instead find ways that you can embrace body positivity and self acceptance. Your body, even though it is imperfect, is still worthy, and it is still capable of pleasure. Some of these things that we see in the media are going to have extremely unrealistic portrayals of bodies and extremely unrealistic portrayals of healthy sexuality. I think it is very important to make yourself aware. All of that that we are just taking in, whether we are trying to or not, can have an impact on what we think about sex or what we think it is in our mind.
Check your social media feeds, check all the media you're consuming really, and ask if it is portraying healthy sexuality and healthy body positivity.
BECKY: So guys, you always hear us talking about self care and this is not any different. You've heard us say it before. Self care is a journey. Sexual health should be part of that journey.
A little education and consistent effort can really go a long way in helping you figure out ways that you can engage with your partner that allow you to have intimacy and don't cause difficulties in managing your conditions. Be brave enough to talk to your doctor about this if you need help, because you might. And that's okay. Don't be afraid to bring your partner in to talk to your doctor. Maybe you do it as a team.
ALYSIA: Your doctor's heard it all. They're not going to be shocked. They're not going to be horrified. You don't need to be embarrassed about this. Your doctor has heard it all.
BECKY: So true. There are things that can be done and we need to remember that.
We shouldn't feel helpless.
We talked before. There are so many times where we're on the forums where we have seen this. And sadly, I've seen people who have lost partners, who have had problems with this, recognizing that obviously your partner is always going to have a choice in what they choose. But we're saying there are some solutions to some of the problems. There really are. And please educate yourself because it is so worth it.
ALYSIA: Yeah, it does take effort, right? It's not something you can just be like, well, I'm just going to try to be more in the mood, or I'm going to try to engage. It takes real effort, and it is important to give some of your power bar to that effort. It could save a relationship, literally.
BECKY: It could save a relationship. But also, the beautiful thing about this, there are a lot of things that we give to our power bar that don't give back to us. This is actually one of the things that will.
ALYSIA: And I would also note that it should be good for your relationship, but when you start studying about embracing and learning about your own personal sexuality, it is one of the most beautiful, empowering spiritual journeys you can take. And you will love your body more for it. I promise.
STACY: We need to remember that we've got these bodies and we might struggle to appreciate them sometimes, especially when we're dealing with uncomfortable symptoms of autoimmune disease, but our bodies are capable of immense pleasure. I don't know about you, but if I have to live with the difficult stuff that my body is going to go through, then I'm also going to take advantage of the good stuff that my body can offer, and good sex is definitely some of the good stuff.
We want to leave you with hope and encouragement to prioritize your sexual health. We know it can be tricky, but it's not impossible. It does take effort, but the effort is really worth it, not only for your relationship, but also for your own well being.
So thanks for spending some time with us today. Please find us at autoimmuneadventures.com. Like and subscribe. Let us know what else you would be interested in hearing about, and always remember, you are worthy of joy. Your disease does not define your life; you do.
HELPFUL BOOKS:
*The following Amazon links are affiliate links. Using these links will not cost you anything extra, but as an Amazon Associate, we earn from qualifying purchases.
"Crucial Conversations: Tools for Talking When the Stakes Are High" by Joseph Grenny, Kerry Patterson, Ron McMillan, Al Switzler, and Emily Gregory
"She Comes First: The Thinking Man's Guide to Pleasuring a Woman" by Ian Kerner, PhD
"Communication Skills for Couples" by Golden Hour Publications
"The 5 Love Languages" by Gary Chapman
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