Low Moods, Low Desire and Missing Orgasms: Can You Prevent Birth Control Side Effects?

“Low Moods, Low Desire and Missing Orgasms: Can You Prevent Birth Control Side Effects?”

a lightly edited Girl Boner Radio transcript

This episode contains brief mentions of suicidal ideation about 11 minutes in. Please take care while listening.

Meagan: 

My journey with birth control as birth control, like for that purpose, was a little bit more normal. I was 18. I lost my virginity and then suddenly was like, oh my gosh, I need birth control. I can’t keep doing this… I had things like constant migraines that were not always the painful kind. I’d have, what’s called silent migraines too, where I’d have all of the like vertigo and sensitivity symptoms just without the full on headache. And so I was like, why am I having all these cluster headaches? What is this about?

And the doctor was not helpful. so I had those and then mood swings were just always crazy for me. Just, I would go from laughing to crying to just so angry at the drop of a hat that. I was like, I’m not okay with being like this. I would yell at people. I was like, this is not who I am. This is not okay.

And then one of the bigger ones was my sex drive just totally went away after a while. And there was no way to orgasm by myself, with anyone else. And honestly, the thought of sex started to make me feel a little bit physically sick, like queasy. Because the sex drive had just gone so far away.

…It was also honestly, so I consider myself somewhat hypersexual. And so it was jarring definitely to completely lose my sex drive after like having had a high one. Who is this person? But so getting that back was a lot like getting back a piece of myself. 

Natalie:

I think it was pretty much quite hellish from the get go. So when I had it put in, I was told that I would be in pain afterward, but the pain that I experienced was nowhere near what I expected. Like my body was instantly rejecting it and I still had to travel home on the train and I just felt like I was gonna pass out the whole way home.

The pain was unbelievable. It just literally felt like my body was trying to squeeze the thing out of me. I just remember going home and taking some strong kind of para suitable and I fell asleep, but then the next day I was fine. And then I would say about three weeks later is when the bleeding started.

It was super heavy and it was just nonstop and it’s not like anything I’ve ever experienced. I had to be careful what I was wearing. It was just an awful experience. And then on top of that, I started to get, I think, after about six months or so, I started to get extremely bad cramping. It just got me to the point say, I just need to get this out my body. It just seems like it doesn’t agree. And basically I just got it removed straight away. 

August (narration):

That was Meagan and Natalie, talking about their early experiences with birth control pills and an IUD, respectively. You might recall their voices from an episode from two years ago, about nightmarish birth control experiences — and how three women found their way to an option that suits them so much better.

We’re all so unique when it comes to birth control. The method that works great for one person causes wonky side effects in another. I know I had my own trial and error experiences. So how do we figure out what works best for us, ideally without the bothersome or even downright disastrous experiences along the way?

Today’s guest, geneticist Dr. Elizabeth Ruzzo, and her company, Adyn, are working toward just that, for anyone who menstruates or has a need for birth control. And she knows from personal experience how important it can be to find a good fit. 

Like many of us, Elizabeth did not learn much about sex early on. And what she did learn came from nuns, back in the third or fourth grade. 

Elizabeth:

It was a very strange experience to have sex ed taught by Catholic nuns who have taken a vow of celibacy. I would say, you know, they were comfortable when they thought of it as a true biology lesson. So talking about anatomy, talking about periods, talking about where babies come from from the perspective of basically sperm and egg come together to create a baby. But that was pretty much it, nothing about birth control.

And it wasn’t until I think later that they took an approach of really like a scare tactic with STD pictures. And then like, oh, and the condoms are a thing. Or just, be abstinent completely… The main go to advice. 

August:

When do you recall learning that there were other options for preventing pregnancy? 

Elizabeth:

I mean, I think through just talking to friends, and magazines, Cosmo, et cetera. It really wasn’t until I needed to go on it for another reason that I considered getting on it. 

And even then looking back on it, I realized I knew nothing about the different kinds. I knew the pill and basically. Condoms. And that was about it. I didn’t know. There was the ring, the shot, the patch, the IUD, the copper IUD, right? All of these options. 

August (narration):

During college, when she was 19 or 20, she wanted to get her acne under control. So she went to see her doctor, who prescribed the medication, Accutane. 

Elizabeth:

And because Accutane can cause horrible birth defects they basically insisted that I went on birth control at the same time. 

That was a combined oral contraceptive. So probably the most common form of the pill, which has both estrogen and progestin in it. 

August (narration):

These two hormones in combined birth control pills work in a couple of ways: They stop ovulation and make changes in your uterus lining and cervix that make it tougher for sperm to enter in.

August:

And do you remember leaving that appointment? Were you feeling like, oh, my skin’s gonna be healthier now. Did you leave with some hope? Were you having any mixed feelings? 

Elizabeth:

I think I left with hope. I had been on this long journey. You know, my acne was never like terrible. It was just very, very persistent. 

And so I tried everything else, including antibiotics and topicals and you name it. I had tried it. So this was definitely the last resort in their mind. so I was optimistic about that, but it was a little scary, like the way they talked about, the Acutane in particular, they were like, you had to sign all this stuff. Again, kind of scare tactics. Look at these diagrams of babies with like malformed limbs.

And you’re like, wow, I’m gonna put this in my body. And so the birth control piece of it felt not at all scary because of how scary they’d made the Accutane. And they’re like, “and this can cause depression.” And because of that, you had to have really regular check-ins about how you were doing and how you were feeling.

August:

Oh, wow. Okay. So you left that appointment, started the treatment and how did it go initially? 

Elizabeth:

I definitely experienced depression, and I always, you know, blamed it on that Accutane. But I had decided basically like, okay, it’s only six months and I am also gonna be depressed if I still have acne at the end of trying this. So I kind of was like, I am just gonna stick this out and get through it. 

August (narration):

Four to six months is standard for Accutane treatment, depending on the dose. And it’s considered very effective. 

August:

So what happened after that? Did you go through the whole six months then and just hope that everything would be… 

Elizabeth:

Yep. I made it through the whole six months. And then in what I like to call a very uncontrolled experiment, I went off both the Accutane and the birth control at the same time. So my skin looked better, my mood was better. And I was like, great. I did it. I made it through that time period. 

And so it wasn’t until years later, when I went back on just a birth control alone and experienced depression again, this time actually worse. Did I start thinking like, huh, I wonder how much the birth control the first time contributed to this depression I’m experiencing.

August (narration):

That was about four years after she’d been on Accutane, and the birth control method was the same as her first stint: another oral contraceptive. This time she was taking it purely to prevent pregnancy. 

And she wasn’t anticipating any problems, since no one told her depression was a potential side effect. All that time she has attributed her depressed moods during acne treatment to the acne medication.

But gradually, her moods took a turn again. A major one.

Elizabeth:

I had a lot of stuff going on at the time. I was in graduate school, you know, working on my, PhD for genetics and started realizing that I was experiencing a lot of depression. And this time it was, I would say much more severe to the point where, um, I was having suicidal ideations.

 And even that I think I was sort of in like a little bit of a state of denial, because I was in such a high stress environment to be like, you have to keep going, like, don’t worry about yourself. Kind of like, just keep powering through. But I had a conversation with a friend who was older, he was married, he had kids and he randomly, we weren’t even that close, like took me to lunch and told me he was considering suicide. Like he described it and it was all these things and it was this, like, I am feeling that same way. I just haven’t let myself really like, acknowledge it. 

Luckily, he’s great. Everything’s fine with him. But it kind of set me down this path of being like, I need to do something about this and also realizing that nothing had changed in my life. 

Depression is a complex disease, right? It’s both genes and environment. And so if you have circumstances that change, you know, your grandma dies, your cat dies, things happen. You can get depressed for me, that wasn’t a change. Right? The only thing that had changed really was that birth control.

And so I had gone to, you know, a doctor to say, Hey, I think this is happening. And they basically said, oh, No, no, that’s not possible. Your birth control won’t do that. 

August:

Wow. Just completely dismissed right away. I know there’s more knowledge around mental health issues and birth control now—and still it’s not like on the front page. But at that time…had you looked it up and saw, oh look, this is a thing. Or was it purely from your own experience? 

Elizabeth:

It was purely, I felt like I knew it from my own experience. The papers that I rely on heavily now for my work with Adyn and our research came out after this time point.

So to my knowledge there weren’t concrete studies really looking at this more small scale or anecdotal kinds of studies. But it was very frustrating to basically be gas lit by my doctor. Especially as, an educated extrovert. I don’t necessarily have a hard time advocating for myself.

And so to still be kind of shut down that hard was really hard to the point where I was like, okay, I must be wrong. Like this is a doctor. Like I must just not understand something. 

And so I went, I think for another three on it. And then was just like, no, everything in my body is screaming that this is what has changed. And this is what is making me feel miserable. And so without, you know, permission, if you will, from the doctor, I just went off of it and, and that change was, was almost immediate to feeling better. 

August:

Ah, wow. Did the doctor, when they said it couldn’t be this, did they say, it’s probably this, or maybe you should see this person? Or was there any further…

Ah, wow. Did the doctor, when they said it couldn’t be from the birth control, did they provide—well, it’s probably this, or maybe you should see a therapist? Or was there any further… 

Ah wow. Did they provide any guidance about seeing a therapist or was there any further information?

Elizabeth:

Nope. 

August:

Nothing. 

Elizabeth:

They were basically like, oh, you’re a grad student. It’s probably just stress. 

August:

So even if it wasn’t from the birth control, that is heartbreaking because someone just went in with suicidal ideation. 

Elizabeth: Right. 

August:

You don’t just say, “Oh, yeah. Stressful life. Have a good day.” 

Elizabeth:

Exactly… I think I really just became super kind of angry when I realized that that was what had happened. , and I started, you know, Talking to friends and trying to understand what their experiences were like on their forms of birth control. And those conversations were super enlightening, right?

Certain friends were like, “Oh no, I love my birth control. It’s the best. Like my skin is better.” Some of them were like, “my mood is better,” right? Which was the complete opposite of me. I had friends who had other side effects, not depression, multiple friends who had very serious blood clots, a friend who had her gallbladder removed, right. People have widely different experiences.

And kind of in parallel to those conversations, I was doing research, in the field of precision medicine. Right. The whole idea is that medicine isn’t, this one size fits all. So we were looking at things at that time, like response to epilepsy medication. So why do different people diagnosed with epilepsy, respond to one drug and not another. And can we find the underlying genetic cause that will help us then predict who’s more likely to reach seizure, freedom on one drug versus another. And so that kind of just planted the seed in my head. It wasn’t fully like, oh, I’m gonna go do this for birth control.

It actually didn’t come until years later, but it was this idea of pharmacogenetics and precision medicine was definitely a huge area of my research and focus.

August (narration):

Elizabeth was working on her post doc at UCLA when the idea for Adyn began. 

Elizabeth:

I was working then in autism, we were finding a bunch of autism genes. 

August (narration):

She explained that there’s the DNA we’re both with, which turns into something called RNA, which makes proteins in the body.

Elizabeth:

We were looking at RNA levels over time. So throughout development, in people with and without autism, and trying to understand how that can inform, disease, state and progression. 

So my light bulb moment was sort of like, what if I could do something similar but instead of looking at RNA levels, look at hormone levels over time and combine that with these large scale population, genetic studies? 

And that opened up a whole world of possibility in terms of how you think about doing research and development, how you can focus on, I think it’s 98 diseases that are differentially, disproportionately or solely affecting people assigned female at birth that have been historically underfunded and under researched. And so that was kind of the moment that I was like, I think I want to work on this medical gender gap. 

I mean, you know, women, weren’t required to be included in clinical trials in the us until do you wanna guess what year?

August:

Oh my gosh. I know the clitoris wasn’t really known about until, you know, a couple decades ago. 

Elizabeth:

Yep. 

August:

Um, gosh, maybe the eighties?

Elizabeth:

Even worse, 1993. 

August:

Gosh. Okay. So it is pretty close to the, the clitoris . 

Elizabeth:

Yep. [laughs] 

August:

Oh my goodness. I mean, I was in like high school. That’s trippy to me. 

Elizabeth:

Right? It’s completely wild to realize how long lasting that void of research for that many years can be. And the disparity in where the research dollars are going still continues to lead to these gaps in not just research, but obviously development of both diagnostics and treatments for those disorders. 

*****

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*****

August:

So would you share, in a nutshell, how Adyn works? 

Elizabeth:

Yeah. So we have created the first test that’s designed to help prevent birth control side effects.

So this is an at home test, like 23 and Me, if you’ve done that. We collect a little saliva sample that we use to analyze DNA and a finger prick of blood that’s dropped onto an absorbent card to measure hormone levels. And then we use that data to generate a personalized report that helps you understand your risk for certain side effects.

The other thing we do that’s really helpful is we have you say upfront what birth control are you currently on, if any? What have you been on in the past, if any, and what side effects did you experience? May those be bad side effects or potentially good side effects. 

The other thing to remember is birth control is medicine. And for a lot of people, it can help do things like control heavy menstrual bleeding and things like that. So we get all of that information, as well as a little bit of background on your goals. You know, how soon are you thinking about having children potentially? 

Do you like the idea of taking a pill, things like that. And then after the testing piece, we also have the ability to have a synchronous, so by video, virtual care, visit with a medical provider, who’s trained in understanding the results of the report and can really give you a culturally competent contraceptive counseling visit so that you really feel like an equal in making this decision with that provider.

August:

That’s really beautiful. And I just feel supported listening to it.

Elizabeth:

Oh, good!

August:

Because it is such a solitary journey, it feels like, trying to figure out your own birth control or contraception. And I hear from so many people who’ve learned through experience saw these challenges and things they didn’t know. So that self-awareness seems really, really important. 

Were you able to go through it yourself and see, oh, I would not have recommended this one for myself. Could you see the depression tendency in your results? 

Elizabeth:

Yeah. And the other thing that’s really interesting for me is that later where I landed was on, a hormonal IUD, which is progestin, and what I found out about myself later was that I had uterine fibroids. 

And so uterine fibroid growth can be controlled by the localized progestin in the IUD. So that’s been a perfect example of my birth control being medicine for me and helping me control that condition.

August:

Do you hear much from people or in your data? Do you see a lot about sexual side effects? I’ve heard from people with so many questions about this. Just last week I received one about difficulty experiencing orgasm and was told by the doctor there’s no link, that kind of thing. What can you share about that?

Elizabeth:

Yeah, I mean, One of the most eye opening things about what we’ve done is just realizing, how much work we have to do in understanding a lot of this. So, I also have not seen anything specifically around inability to achieve orgasm with birth control. That of course does not mean that that is not a real experience for that individual.

And we would love to be able to identify associations at a minimum between certain potential birth controls and that side effect. If not also understanding what is it that’s unique about that person’s underlying biology when combined with this birth control, that leads to that outcome. I know that loss of libido is another one that has been reported fairly low rates.

I think one of the more, common ones is vaginal dryness. So there’s multiple potential causes for this, including your birth control. And if you’re on the right birth control, it can even potentially help. Vaginal wetness, I should say, is also controlled by the levels of estrogen.

So if you’re able to take and tolerate extra estrogen in your birth control, which is not always the case for people who are at, let’s say genetic risk for experiencing blood clots, which is one of the things we look for. If you’re not in that risk category, then being on a birth control with added estrogen can help alleviate some of that vaginal dryness. This is also the reason that I think 75% of post-menopausal people will experience vaginal dryness. That’s because your estrogen levels are depleting as you go into menopause. 

August (narration):

As a little sex ed side note, vaginal dryness — whether from birth control, menopause or something else— can take away from our desire for sex and our likelihood of experiencing pleasure. It can make penetration painful, and therefore, undesireable, for example. Or if you’re used to linking arousal and desire only with wetness, you might not even realize you’re turned on or capable of sex.

Other potential side effects of birth control, like depression, nausea and headaches, can also make sex and orgasms less likely or unappealing. Some of these side effects are temporary, and some linger on. And regardless, you shouldn’t have to “grin and bear it” or figure these things out on your own.

That’s another thing Adyn provides, Elizabeth said: access to medical experts who specialize in contraception.

Elizabeth:

The people that we work with are both doctors and nurse practitioners. So they have the ability to prescribe. They frequently have even more experiencing prescribing than a lot of OBGYNs who do a lot more, delivering babies and other things like that. So they are definitely experts in prescribing contraception and helping you find the right one.

The other stat, I should say that always blows my mind is that the average contraceptive counseling visit in the US is 13 minutes. So even though there are almost 200 prescription birth control options on the market, you’ve got 13 minutes to pick between them.

When we’ve interviewed medical providers, they’ve said, “oh, actually that seems high.” It’s frequently like six minutes. So we give them 25 more than double that average length so that you can really have that conversation and make sure that you’re landing on something you’re super happy with. 

You’re welcome to take the results and show them to your doctor and, and get their opinion or get the prescription from them if you’d rather, if you’re more comfortable with. But a big part of, I think the accessibility piece is you can also do it from your living room. You don’t have to take time off work – travel, park, all of that. 

August (narration):

Regardless of how you go about starting a birth control, Elizabeth said that self-trust is really important — both for finding the ideal method and for advocating for yourself, if needed. Once you do that, you can prepare well.

Elizabeth:

I think it’s really trusting your body, right? A lot of times coming prepared with your own questions is really helpful, which is why I think the fact that we collect a bunch of information up front is helpful because then both, you’ve had time to think about it, your provider has time to look at it ahead of time and you’re kind of both more on the same page when you go into that conversation about goals and, and history.

It’s really knowing that with 200 highly effective options out there, you’re gonna find something that’s works for you. It’s just a matter of what’s your tolerance for going through trial and error. And that’s what we’re trying to do is eliminate that arduous and often really painful process of trial and error to find one that’s gonna work for you, that’s gonna let you live the life that you wanna live and, and not suffer from adverse side effects. 

August (narration):

One thing I find really encouraging about the work Elizabeth and Adyn are doing is how receptive doctors have been. It shows that so many doctors really care about their patients — they just may not know better yet. So few learn much at all about sexuality, for example, so when someone comes in asking about a sexual side effect I can see how it might be confusing.

Elizabeth:

I think our first kind of line of feedback has actually been from the doctors who have seen the report, how we’re doing it and are just like, this is information that people do not typically have when picking a birth control, and when prescribing a birth control. And so they get it, like they get it immediately, the value add, how much it’s gonna make them more confident, in their prescribing decisions, which is really, really incredible, cuz that’s the goal, right, is to truly change the standard of care and not just like put it out there to have it out there, right? We wanna change how this is done. 

August (narration):

Adyn is also helping to change the ways we talk about people who menstruate and can get people. 

August:

I really appreciate your attention to inclusivity because I find that even very well intended, people and companies who are trying to provide birth control, contraception, fertility, treatments, all of those things, so many of them exclude certain populations. Was that something that was just your mindset going into it, that it’s not just women who need it.

Elizabeth:

So the other piece of kind of how I got here, I sort of mentioned the medical gender research gap before, The other thing that happened in grad school was in genetics in particular, we have this bias towards, sequencing individuals of European descent, which meant that anytime we looked in a non-European population, We had much less power to kind of make the same statistical discoveries, , that we could in European populations.

So a big part of the mission is just in general to make all of scientific discovery more inclusive. So that’s both, people assigned female at birth and non-European individuals and just really being as inclusive as possible in how we’re doing this. 

And because birth control is medicine, you’re absolutely right that it is not just women who take birth control, right. Especially because it’s such a powerful tool, , to potentially prevent menstruation, which can be really important for the trans community. So it’s just really important to be inclusive, I think from the get-go about thinking about who we’re serving and how we’re serving them best.

August:

And how has this work impacted you personally, just in your own life and your journey… 

Elizabeth:

That’s a hard question. I mean, I think it’s been incredibly, both challenging and already rewarding, even though I know we still have so much to do. I think one thing I’m struggling with currently is like, I’m not doing a good job at celebrating the incremental wins because it’s such a big vision and I know how much more I want to do that it’s like, oh, okay, great, good job. Good job everyone. Now, next thing. 

And so I would love to get to a place where I can take a minute and enjoy it and actually like thank you for asking that. It’s moments when I get to step back and to talk to someone and be like, oh wow. We have done a lot of really cool work already that I get to kind of take that second to reflect and, and be proud of what we’ve done. 

August (narration):

To learn more about Adyn, visit adyn.com: that’s A D Y N  dot com. 

Elizabeth and her team offered a promo code for you all, too. To save $50 on a Adyn birth control test, enter the code AUGUST50 at checkout. adyn.com They aren’t sponsors of this show and I don’t get kick backs — that’s just a generous offer that I am grateful to be able to share with you all. 

In addition to birth control tests, you can find some really helpful information on the site.

Elizabeth:

I’m really proud of our blog, actually. We called it Mind the Gap and we have scientific review for every post there’s peer reviewed research articles reference throughout. We have topics on there like we talk about vaginal dryness and how you can treat that. So I think that’s a good way to dive in and just like, understand what we’re about. 

[acoustic chord riff]

August (narration):

I’ll leave you with a bit of a success story involving Natalie, the woman whose voice you heard at the top of the show who had severe pain and bleeding from an IUD. She switched to a contraceptive implant placed beneath the skin in her arm. And she said it has been, by comparison, a dream.

Natalie:

It’s been amazing. I mean, it, it has pretty much stopped my period, which I’m not complaining about, but yeah, it’s fine. It’s not something I have to think about. It does its job and I don’t seem to have many side effects. So I feel like I’ve made the right choice.

August (narration):

Meagan, who had migraines, mood swings and lost her interest in sex has found tremendous relief in non-hormonal options. She said she’s learned that her body doesn’t tolerate them. Her partner at the time had a vasectomy. With anyone else, she would use a condom.

Meagan:

I would warn, and I have warned anybody who has asked me, exactly what side effects I’ve had. I always say, you won’t necessarily have this experience. I have these things that have probably helped lead to the problem here. But I definitely think more people should know just how bad the side effects can be. And I definitely know women for whom that’s worth it. Like not having a baby is worth whatever the side effects are. And I totally get that. And they’re not as bad for some people. 

[acoustic chord riff]

August (narration):

For more on a broad range of birth control options, you can also check out Chapter 10 of my Girl Boner book. 

And, if you’re enjoying Girl Boner Radio, I would so appreciate a rating and review on Apple Podcasts or the iTunes Store — and if you’d share links with your friends. You can also support the show, and get fun extras, by joining my community at Patreon.com/girlboner.

Thanks so much for listening (or reading!).

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