Vulvodynia and Hormonal Birth Control (Episode 346)

Full Transcript: Episode 346

Lisa: This is the Fertility Friday podcast, episode number 346. Welcome to the Fertility Friday podcast, your source for information about the Fertility Awareness Method and all things fertility. I’m your host, Lisa Hendrickson-Jack. I’m the author of The Fifth Vital Sign and the Fertility Awareness Mastery charting journal. I’m a certified fertility awareness educator and holistic reproductive health practitioner with nearly 20 years of experience teaching women to connect to their fifth vital sign through menstrual cycle charting, balancing hormonal health, and optimizing the menstrual cycle without hormones. I’m outspoken about hormonal birth control and its impact on fertility and overall health because you have the right to know how your body works and how artificial hormones disrupt that natural process. I host live coaching programs to help you achieve optimal fertility and health because it’s important to have healthy menstrual cycles regardless of whether or not you want to have babies. I’m also a wife and mother of two beautiful boys. I know, I know, I’m a busy girl, but I managed to fit it all in. This podcast is designed to empower you to take full control of your cycles, your fertility, and your overall health. And I’m so excited that you’re here with us today.

Lisa: Today’s Fertility Awareness Reality series is also a Pill Reality series. I feel like it’s a crossover between the two. So in today’s episode, I’m sharing my conversation with my client Annie, who came on the show to share her experience with vulvodynia. And so vulvodynia is something that I haven’t focused on a ton on the show, but it certainly has come up, and I’ll link previous episodes that touch on vulvodynia in the show notes page. But this is an important episode, an important conversation, and whenever I’m talking about vulvodynia, some of the themes that I think are important tend to come up. And one of them is the link to birth control, hormonal contraceptives, the very clear and obvious link that is often ignored by many health professionals. And hopefully we can, you know, change that, continue spreading the word about that because it’s frustrating. Many deep breaths are necessary. And the second aspect of it is just how challenging it can be to receive adequate support and care and really basically get, you know, get the support you need to reverse this situation so that you can enjoy your life without the vulvar pain that is associated with this condition. So both of those themes come out in detail, of course they do, in today’s episode. So without further ado, let’s jump into my conversation with Annie.

Lisa: And I’m really excited to be here today with Annie. Annie is a member of my most recent Fertility Awareness Mastery group program. And I’m really excited to have her on the show to share her story and experience, because we were just talking in the pre-chat. And Annie, I know your experience is one that I’ve touched on on the podcast a couple of times but hasn’t come up that much. So welcome to the show.

Annie: Thank you. Really happy to be here.

Lisa: Well, I’m excited to have you. And so I always, I don’t know, at some point I should just realize that it’s run of the mill, but I realize that this is kind of one of the only places or experiences in your life where it kind of starts with, so tell me about your first period. I’ll hold you when that happened, but certainly give us a bit of background. So, when did you first start menstruating? What was that experience like? Have you used hormonal contraceptives before? And what led you then to want to choose fertility awareness at this point?

Annie: Yeah, so I guess I don’t remember the exact date or year, but I would say that I started menstruating when I was about 13, I think, so middle school seems to ring a bell. And I think I didn’t have too many issues with my periods, and then I decided to go on birth control later in my teens when I was about 18. And at that time I went on the pill and then I basically was on the pill for birth control purposes — not for anything medical related to my periods — but I basically was on the pill until about a year and a half ago or two years ago. And so I’m 34 now, so that’s a really long time that I was on the pill. In terms of other birth control and my experience there, I decided a couple of years ago that I wanted to try going to an IUD. It was actually an effort to kind of reduce my body’s reliance on hormones, and so to go to lower hormone levels. So I changed from a regular pill that I’d been on for a long time and had no issues with, to a Mirena IUD. And so that was about two years ago that I got the Mirena IUD. And this is all kind of leading up to how I got to where I am today. So after getting the IUD, I thought that I was taking a while to adjust to it. I had a lot of issues — well, not consistent issues, but sort of random issues, or what I thought were random, with the IUD. I would get some pain, kind of what seemed like at random times, or maybe it was around when some sort of hormonal cycle was happening throughout, like in the middle of a month sometimes. And I would also get a pretty serious discharge at times. And sometimes I had cramps, really bad cramps. Actually, there were maybe three times — I only had the IUD for about a year, but maybe three times in that year — where I had cramps so bad that I had to leave, go home basically, couldn’t even stand up.

Lisa: Sorry, and were those with your period or just totally random?

Annie: I guess what I decided was maybe that it was, but it was difficult to tell because I wasn’t really getting a period. It was super light, and so I kind of thought my body was just adjusting to the Mirena, and things would work out, and the discharge was — I wasn’t having much of a period, so maybe the discharge was in replace of that. I honestly didn’t know a lot and hadn’t been provided a ton of information. I thought I was making a good step for me. So I had a few different issues with that. And sometimes, too, I would have pain with sex that was very sharp, like it would be like all of a sudden I got punched in the stomach — that sort of pain. And I had heard that some people had issues, or maybe it was the position of the IUD — I had them check it, they said it wasn’t. I decided that I would — well, so that went on for about a year, these sort of random issues, and when I went for my annual checkup I thought I better talk to my gynecologist about these things because this isn’t fun, right? And so talking to my gynecologist, I described the sort of more intense cramps maybe around when I was getting my period, and then also the sharp pain and the discharge. And she immediately was like, “Oh, you have an infection. That’s not supposed to happen with your IUD. That’s an infection.” And I was like, “Oh, okay, well, what do we do?” And so, as I think a lot of people have experienced, this is just kind of a traditional OB/GYN response — they immediately suggested that I get, well, they basically said it was bacterial vaginosis after doing a test, and they suggested that I take an antibiotic. And so I took the antibiotic, it was like five days of inserting it.

Lisa: Sorry, I’m interrupting you — so you did a test, they actually tested you, swabbed you, and it came back positive for bacterial vaginosis?

Annie: Yes.

Lisa: Okay, yeah.

Annie: And so my symptoms were pretty consistent with what that was, and so I was convinced that made sense. And so I took the antibiotics, and after about five days of the antibiotics, the bacterial vaginosis went away, we think, but then I got a terrible yeast infection. So I went from one end to kind of the other in terms of my microbiome, I think. And so this was about a year ago now — I still had the IUD. So I got this bacterial vaginosis, then treated for that, and then got a yeast infection, and then had symptoms.

Lisa: Have you ever had bacterial vaginosis before?

Annie: No. I’ve had no issues, birth control had been fine for me. I had a yeast infection here and there, but not really. So it was pretty different from anything I had experienced. This yeast infection was really bad, maybe one of the worst ones I’ve ever had. So I went back to the doctor and they said, “take Diflucan for this.” So they gave me a round of that. And basically what happened over the next few months was that the yeast infection, or some of the symptoms, just didn’t go away. So I kept going back, and I kept saying “yeast infection,” they were doing a panel but weren’t detecting it, but they were still saying it must be yeast infection, that it’s probably just in the early stages or not detectable in the lower range. And so obviously when you have a yeast infection you’re very uncomfortable, so I wanted to get rid of it. So I was doing all the things — I cut out alcohol, I cut out sugar, I was trying to make a number of changes, because if it was my body that was resulting in this, I wanted to figure it out. So I made a bunch of changes, nothing helped. I kept going back, they kept not being able to detect it. And I finally, just through talking to other women in my life, started to learn a little bit about other things that could be influencing or giving me that pain. The thing that about it being a yeast infection that didn’t make sense is that after a few months into it, there was no yeast — it was very dry, there was no irritation, nothing visible in the area. And so I didn’t know really what it could be, but I knew that it wasn’t right.

Lisa: Right. So in terms of the symptoms, because at first it started off being the BV, and then it went to yeast, and then, for the listener who’s kind of like, “this sounds like something I experienced,” what were some of the symptoms that you were experiencing when you were trying to figure out what this was?

Annie: Yeah, so when I had BV, I didn’t have any of these symptoms — I just had a pretty funky, smelly discharge, maybe every few weeks, that I would notice. That was it.

Lisa: I’m actually going to ask you to describe the discharge, if you want to.

Annie: Yeah, so I guess it was, they say foul smelling — that’s really what it is, maybe fishy smelling. And the thing that was different about it was that I could smell it when it happened, if I was sitting — right, so it was kind of like a gush of this stuff.

Lisa: Okay, yeah, I think that’s really helpful, especially for anyone trying to figure out, “is this normal, is it mucus?”

Annie: Yeah, and that obviously is not mucus, nor is it normal. I was sort of dealing with it and thinking, “oh, this is because I got the IUD, my body will work it out,” and, you know, immediately as soon as I told the doctor, they were like, “no, that is not normal, that’s why you go to the gynecologist, you go talk to someone when that happens.” So, so yeah, after that, the yeast infection symptoms were pretty consistent — the kind of discharge consistent with a yeast infection, itchy, sort of inflamed feeling. But once I got into those months afterwards, where the symptoms were persistent but there was no discharge or yeast, it literally just felt — and this is actually one of the hardest things about it, it was hard to describe, but I kind of got a little bit better at it after reading about all the different ways you can hurt there — the feeling was kind of irritated, scratchy, just sensitive to touch. I basically did not want anything to touch me. Pants, underwear became totally uncomfortable. Pants were unbearable, sitting was unbearable. It was really hard because most people have a job where I have to sit, but I couldn’t really sit for long periods of time, I had to move around a lot, and I couldn’t wear pants. One of my worst experiences while this was happening was I took an eleven-hour flight to Finland. I’ve never been in so much discomfort as I was on that flight, because I couldn’t get out of my seat really — I could get up a little bit, but I was sort of stuck, and anytime I got sweaty it would get worse. So this sort of not being able to wear pants was, for me, the clearest sign that something was wrong.

Lisa: Well, and it’s not a yeast infection, because a lot of women listening right now have had yeast infections, and yeah, it’s uncomfortable and itchy and you get the cottage-cheesy stuff sometimes, but certainly it’s not to the extent that you can’t wear underwear without feeling a significant amount of discomfort.

Annie: Yeah, right. And it wasn’t excruciating pain, it was more like I just couldn’t sit or do normal stuff, which in some ways was even more debilitating. So that went on for months. And I had the idea that maybe it had something to do with my IUD. So I went back to the doctor and said, “could this be a result of having my IUD?” They said, “no, infections — it’s possible you got the infection while you got the IUD,” and I was like, “but I never had any of these issues before, couldn’t this be related?” And they said no again, and I just said, “well, just in case, let’s just take it out.” So I had it taken out a few months after dealing with these symptoms. I was hopeful that would fix it and things would go back to normal. I immediately went back on the pill because I wasn’t ready to not be on the pill, and I had been fine with the pill before, so I thought that’d be okay. So in this time, reading and learning and trying to figure out what could possibly be going on, I was seeing an acupuncturist — I’d been going to acupuncturists for other reasons for a while — and they suggested that I maybe look into some sort of abdominal massage or see a pelvic floor physical therapist, because maybe some of the pain could be related to muscle tension in that area, and not this sort of surface irritation. And so I went to see a pelvic floor physical therapist, and then began this last eight months of working with people who are more familiar with these types of symptoms, but it still was a bit of a journey.

Annie: I didn’t realize my story was going to take this long, but there’s a lot of details.

Lisa: No, I think it takes as long as it takes, and there are women who are listening right now who have experienced something similar, or experienced some degree of pain with sex or pain in general in that area. And certainly there’s a certain percentage of all women who experience an increased level of pain or discomfort in their vulva area specifically and directly due to hormonal birth control. So it’s not the most common side effect, but certainly it is a side effect that we would all be better off knowing about. Period, end quote.

Annie: No, totally agree. So at this stage, the connection had not been made to birth control for me, right? I thought this was more like a result of having an object inside of me, and maybe the fact that I had been in pain and had that bacterial infection for so long had caused my body to be in the state that it was sort of stuck in. So I started seeing a pelvic floor physical therapist, and she recommended that I see a urologist who specialized in a condition called vulvodynia. So I had never heard of vulvodynia, but pretty much immediately reading about it I was like, yeah, this is exactly what this is. There are two different kinds — there’s a more localized and then a more general kind. I’m forgetting the names right now, but for me it wasn’t like one place where there was pain — some people have pain at the opening of their vagina, and it wasn’t really that for me, it was just this general, all-over discomfort with any material or anything touching me. And again, not being able to wear pants. So that was helpful — I was able to get tested, they have a Q-tip test that they can do to test your sensitivity in the area, and I got a diagnosis from this urologist. And then came figuring out how to treat it. So, at the recommendation of this doctor, who was really helpful, and at least confirmed that something was going on, and was also really trusting that the pain was real and it wasn’t something I was making up, which I really appreciated — at that time he suggested that I try going on an antidepressant, one that’s given for really low-level nerve issues, and the thinking was that I had been through these extreme infections and the muscles in the area had tensed up to a point, or had been tense for so long, that the nerves were firing when they shouldn’t be.

Lisa: See, I’m sorry — okay, so someone is probably going to disagree with what I’m saying, but I obviously have a different perspective on this, so I’m going to share it. I’m hearing you say these things, like they’re making this huge explanation of, “it was so traumatic for your body to have these infections that now you have systemic muscle tension,” and not one person is aware of the fact that hormonal contraceptives can change how your body produces hormones — our vulvar tissues are extremely sensitive to testosterone, hormonal birth control significantly suppresses it, and for many women it results in thinning of the tissues and therefore hypersensitivity. I tend to have the approach — and you know, because you’re in the program with me — that I don’t like to jump to the conclusion… it’s like, the simplest explanation is often the explanation. So before we jump through all these hoops and assume you have a psychosomatic condition, can’t you just ask the question of when did this thing start? What changed? Because this is how you have seen me say that to basically every person in their hot seat — oh, so you had this change, when did it change, did anything happen around that time? I mean, literally, this person has this whole thing going on with muscles and tension and trauma, and not one time can you just say, when did this start, what was different? Now it’s not always going to be that simple, but for crying out loud, it’s not like you had a history of pain. So I apologize for the little mini-rant in between, but it needed to happen.

Annie: Yeah, no, well I think what was a little bit confusing was that it didn’t happen right away when I got the IUD. It was sort of, obviously the big change was going from birth control to getting an IUD, and then all of these issues started happening — but the all-over surface pain didn’t happen until after those infections, which I think maybe threw them off a little bit, and that was maybe why the doctor thought what he thought. So I’ll fast forward — then COVID, then the shutdown, and fortunately being able to wear comfortable clothes in my apartment, and being in pain wasn’t as bad because I didn’t have to be at work every day in the same way. I stopped working with that pelvic floor physical therapist because everything shut down, and I went on the antihistamine and the antidepressant, but I really didn’t see improvement. And so it wasn’t until — I started to notice that my pain would be worse in the beginning of my cycle versus when I was taking the placebo pills, and after my fake period on my birth control I would always feel better. And I started to see that pattern over months — I was always feeling better when I was taking the placebo pills, and then it would get worse as soon as I started my next pack back.

Lisa: Interesting.

Annie: Yeah, I did a bunch of things — I was tracking my pain, I was writing a journal, trying to get rid of stress, like I thought I had this chronic condition that wasn’t going to go away until I dealt with everything else.

Lisa: Well, because they made it seem like it was — so you can just hear that part of me being frustrated — they put you on antidepressants because you were having vulva pain, and they basically suggested that it’s essentially a condition that’s emotional. If a man has penile pain, do you think they’re going to put him on antidepressants and suggest it’s because of his emotions?

Annie: Yeah, no, it’s pretty messed up.

Lisa: Yeah, it has to be said, and that’s why I say it, because we can sit here and pretend like that makes sense, but it doesn’t.

Annie: Yeah, right. No, if at any point anyone had told me to go off birth control, I would have gone off it in a second. It’s not an issue, I could have just tried it out.

Lisa: And if it doesn’t get better, see, this is literally how I live my life — okay, so try something, and if it works, this is the whole concept of the menstrual cycle as a vital sign. If you see a problem, you think, okay, it could be this, it could be that, you try it out and then you see. And so, going on a little rant again, but this is a theme that has been through all these podcast episodes. Another example is the depression that a lot of women feel on birth control, and the actual scientific evidence that shows teenage girls who are on hormonal birth control are much more likely to be on antidepressants. And so instead of the doctors saying, “we know there’s a link between hormonal birth control and depression, so since you’re on birth control and having these symptoms, let’s go off of it for three months and see if they improve, and if it doesn’t improve, then at least we can know that it’s not related to that and address it differently” — this is logical — but instead, let’s just put you on two pills. So now you’re taking two pills.

Annie: Right. Yeah, so that was a lot, they in one time — it was a very low level, as I understood it, it wasn’t the amount you would put someone on for depression, but it was still, I’d never been on anything like that in my life. And honestly I just wanted to feel better, I just wanted to be able to go through a day without constant discomfort. I started noticing a relationship between the part of my cycle I was in and my pain. And then I had started to see a new pelvic floor physical therapist, who was actually really wonderful in talking about all the different things that could contribute to this, and how everything is connected. And she was really surprised to hear — she was like, so who’s the gynecologist you’re seeing? And I was like, “oh, I’m not going back to my gynecologist because that didn’t go well” — they kept telling me it was a yeast infection. She was like, “oh my goodness, you should see the specialist here.” And so she recommended a pelvic pain specialist in the practice where I was going for physical therapy. And it wasn’t until I saw this doctor that things started to click a little bit. So I saw the pelvic pain specialist, and she agreed that it was a possibility that the scenario the other doctor had told me was true — maybe that was how I got to where I was — but she also said to me, basically, “okay, so if I didn’t know anything about the IUD, these infections, everything you’ve been through in the last year, and you came to me with these issues, I would basically just ask you one question, which is, how long have you been on birth control?” And I said, over 17 years now, or 16 or 17. And she was like, “and I am not surprised at all considering how long you’ve been on it that you would be having these issues.” She said she’s seeing this a lot — really common, at least in the patients she sees, which she acknowledged were biased because she sees people with pelvic pain. But she said that she’s seeing a lot that women have this kind of increased sensitivity of their vulvar tissue. And so it wasn’t — I mean, I’d read a little bit about the thinning of the tissue — and the main thing she said was that your hormones regulate, keep that area comfortable, they regulate the moistness, and they’re starting to see that women who have been on birth control for a very long time, their bodies are losing the ability to keep that area the way that it should be.

Lisa: Yeah, kind of like what they talk about in menopause. And so this is why it’s important to understand — I mean, you’re in your 30s now, but there are women in their 20s who then have vaginal dryness and discomfort similar to what we would think of as being typical for a woman who’s literally going through menopause. And there’s a reason for that. And so we know that the birth control pill suppresses your normal hormone production because it needs to in order for it to work. And so that means you produce significantly less estrogen, progesterone, and testosterone — your own natural versions of those hormones. And so it obviously affects women differently, so the actual effect that a woman will experience is not going to be the same across the board. But from a hormonal standpoint, every woman on birth control is going to have a significantly lower output of her natural estrogen, progesterone, and testosterone. And those hormones, particularly testosterone, are crucial for — like exactly what you said — maintaining a healthy, happy vulva.

Annie: Yeah, so that seemed like a really — it was wonderful to have someone know about it and be like, “this is happening, this is really common.” And her advice to me was super simple — she basically said, “you should just try going off birth control, just try that.” She said if I really didn’t want to, I could try a progesterone-only birth control, there are other options. And so I weighed all my options, and at this point I’d been on the antihistamine and the antidepressant for a long time, and I just was like, I need to give my body a break, I need to wean off these other drugs and just see what happens naturally. And so — and then I was, part of that, you know, I think going off birth control was really scary for me, even in my 30s I have the same fears as I did when I was a teenager, and that’s a whole other discussion of the way we just instill fear in women around getting pregnant unplanned. Here I am, an adult, fully allowed to get pregnant, I’m old enough, I could do it when I want to, if it was unexpected it would be okay, but I still have this fear and kind of shame around that, which I think I’ll continue to deal with. But anyways, I was scared — it’s always been kind of a crutch for me, birth control, like just one less thing to worry about, the possibility of getting pregnant and my whole life changing. And so I decided — that’s why I decided to join your class — because I knew that having some guidance and a support group, women to share the experience with me, and know that I’d have a community to go through this with. So it’s been now like three months since I went off birth control, went off everything else, and this is probably not something that will happen for everyone, but almost immediately — since my last cycle on birth control, and into the next month not taking the next set of pills, I felt better, way, way better. And I now basically go from — I went from 20 to 30 days of the month where I would have pain, varying levels but general low-level discomfort the whole day, having to fidget in my seat, not being comfortable in jeans, not being able to wear jeans almost at all — to now maybe five days top out of the month where I have discomfort. And I’m trying to work on developing a healthy cycle, and hoping — my doctor said it would take probably a little while for my body to get back to normal — so I’m hopeful it’ll continue to diminish in the coming months.

Lisa: Well, that’s a significant improvement. I remember we talked about this pretty much at the beginning, when everyone introduces themselves and shares a little bit at the start of the class, and I really appreciate you, Annie, taking us through your story. It’s a lot to have to deal with, and just from listening to your experience, this is the kind of thing that affects your day-to-day life all the time — all the decisions you have to make, from what you’re going to wear, to how you’re going to sit, to whether or not you can go to work. These are the things that, although they’re not on a headline on a newspaper, affect our daily lives and have this huge impact. And they also have an impact on our intimacy and how comfortable you can feel overall in your own skin and body. And obviously I couldn’t even hold my tongue to jump in — but regarding the way it was looked at, it’s unfortunate, and that’s why I keep sharing these stories, because this is what it really looks like for women. And if someone binged on just the reality series or the pill reality series episodes all day, by the end of it you’re going to feel a little frustrated but also heard, because so many women have this experience where either they’re not taken seriously at all, or if they are, it’s highly minimized. And I mean, the doctor who supported you was obviously doing what they thought was best, and it’s not to throw a ton of shade, but at the end of the day, are you kidding me? And the fact that what they suggested didn’t work —

Annie: Right, but I felt like I continued to try because I didn’t really know what else to do.

Lisa: Yeah, and meanwhile, obviously, the answer wasn’t so simple. And so of course the question is why — and I think this is one of the challenges with birth control side effects, because some women go on birth control of varying types and have a side effect immediately, and other women go on that birth control and the side effect kicks in five years later. I’ve certainly interviewed women who have panic attacks and anxiety that kick up years in, and so you’re not even thinking it could be related. And there was something you said quite early on that I wanted to put out there — you said the whole reason you switched to the IUD was because you were trying to wean yourself off the hormones and get a lower level. And I’ve said this on the podcast before, in the Pill Reality series — one of my pet peeves is the way we talk about progestin-containing IUDs, because it’s very common for health professionals to say things like, “oh, it’s a low dose, it’s localized in the uterus, so you’re getting less” — as if you don’t have a circulatory system. So certainly, with progestin-containing IUDs, you’re not getting the synthetic estrogens — so it is a bit different — but to say it’s “low dose,” what does that mean? The dose has to be high enough to prevent pregnancy, so what does “low” mean, lower than what, higher than what? And also, it’s not localized — the progestins do not stay in your uterus. So just in case anyone doesn’t know — spoiler alert — the progestins don’t stay in your uterus, just like if I put lotion on, the xenoestrogens in it don’t stay on my skin. So can we just stop saying stuff like that? Because then you took it with the impression it was going to lower your hormone levels, not simply expose you to different types of synthetic hormones, which could have a different effect. And unfortunately, in your case, maybe it just exacerbated things — because it’s certainly possible, like your pelvic floor physiotherapist suggested, that it could be the compound effect of all those years. So it’s certainly possible it could have been the trigger, but certainly we just don’t know.

Annie: Yeah, no, it’s been quite an experience. It’s kind of crazy to me that it took so long to get to such a simple solution.

Lisa: Yeah, well, this is the long segue into, so what brought you to fertility awareness?

Annie: Right, I mean, you have time, because how long you got, because I’ll tell you.

Lisa: So then share with us — I also just want to highlight something else you said, because I think it’s so important. You said, “I’m an adult, I can get pregnant if I want to, but I was still just as terrified of getting pregnant in my 30s as I was in my 20s.” And I think this is something that as we get older, all of us as women have to start to have these conversations with ourselves, because I feel like there are certain things in life where we make a decision once, and then we just stick to it because we made it. So you made a decision when you were 19 to go on birth control, and you’re not questioning it — the decision is made, it’s handled. So you’re not really checking in on that. And certainly, what we don’t consider is that everything isn’t the same — if you’re 25, you’re not 19; if you’re 30, you’re not 19; if you’re 35, you’re not 19. And so at some point it doesn’t mean your decision has to change, but at some point you should ask yourself, is this still the best way, does this decision still feel right? And ask yourself the question, what would I do if I got pregnant? Because the challenge with hormonal contraceptives, or all of the long-acting methods, is that because it’s “handled,” air quotes, you don’t even consider the possibility that you could get pregnant — because sometimes the methods fail and you do get pregnant, but maybe at 19 you would handle that unexpected pregnancy one way, and at 30-something you would handle it a different way, but you’ve never actually thought about it because you just never revisited it.

Annie: Yeah, there’s no prompt to revisit it. It seems like something you should discuss with your gynecologist probably every year. One of the things that was really helpful for me during the course was that you said everyone, you and your partner, should figure out on a scale of one to ten where you are in terms of not wanting to get pregnant and wanting to get pregnant. And so for me, I’m like a one or a two, but that has probably changed from a zero when I was 19.

Lisa: Right, so what you’re saying is you can adapt these major decisions in light of where you’re at with that. Yeah, because it’s complicated, and I think this is the part people don’t want to talk about, which is why I talk about it — because if you’re 19 and in a certain situation and you’ve made the decision that you would terminate if you had a pregnancy, because there’s a lot of women in that circumstance, it’s possible that when you’re no longer in whatever circumstance that is — maybe a particular relationship, or school, whatever — maybe when you’re 27, if you were to get pregnant, you would keep the baby, or maybe at 32 something would be different and you wouldn’t. And I recognize there are all different opinions among listeners around this topic — I’m just giving it as an example to show that it can shift without us really thinking about it, because of the way our culture deals with birth control. And I’m saying it’s time for us to start thinking about it, especially because a lot of the women in the class were coming off birth control similarly to yourself. So we didn’t get to see, because the class isn’t six months long, what’s on the other end of the transition phase of birth control — but there’s a transition period, when you chart you see it, the mucus patterns take a while to normalize, sometimes the cycle length, sometimes the luteal phase, and you have all these different symptoms, and of course it feels overwhelming. But we talked a lot about how to minimize that, though you can’t get rid of the transition period entirely. And so this is another reason it’s important to revisit your choice of birth control, because what worked at 19 might not work at 32 — one of the important parts of that discussion is that you can go from a zero to a ten on the intention scale in a couple of days. If you doubt what I’m saying, think about women who are waiting until they get married to try to get pregnant — literally, May 24th, not trying; May 25th, wedding day, bam, ready. I see this in my work, women switch on a dime. And so the challenge is, if your birth control method doesn’t allow you to switch on a dime, you can emotionally switch from a zero to a ten, but your body can take nine to twelve cycles to normalize post-pill.

Annie: But going back to the initial point, I really liked that you said that, because we also live in a culture that really discourages pregnancy in a lot of situations, and it is what it is, it’s a challenge, and I think not all of us are encouraged to have those conversations and to realize that there comes a point in your life where it might actually be okay if you got pregnant, and sometimes we don’t realize that has arrived.

Lisa: And I’m not trying to be judgmental, so please don’t take me the wrong way — I’m just saying that many women don’t realize that sometimes you actually are at that point where it would be okay, it wouldn’t be the end of the world, but you haven’t really thought about that.

Annie: Yeah, my sisters and I — I have two sisters, and they’ve both been really supportive through this process. We talk about how we’ve been afraid of getting pregnant our entire lives, and now we’re in our 30s and all of a sudden we’re supposed to want to get pregnant. Like, how? We can’t do this — yes, we want to be married, we want to be — but that shift, even just preparing for it, feels like we’re supposed to all of a sudden not be scared of it. So I think we’re all trying to have conversations, to prepare ourselves a little bit for it and deal with that fear that I think society has put on us.

Lisa: Well, and from a practical standpoint, because that’s more just my observations, since I’ve been around long enough and had enough conversations to see that this is a complex issue — this is exactly why it’s a good idea to have these conversations, but a bigger part of it from the practical fertility awareness standpoint is that it’s a good idea, if possible, to decouple this idea of being off the pill meaning you’re going to get pregnant, because that’s not necessarily the case. And I’ve spoken about it because I see it in my work — it’s this consistent thing, and Annie, you and the younger generation coming up, certainly the fear has been instilled in you, and it’s really hard to just ease into a different way of doing this. So my hope, anyways — well, let us know, so this was what brought you to fertility awareness, because this hormonal contraceptive thing was no longer working because of the discomfort you were feeling, and certainly your experiment of coming off of it had a positive effect, and you still have some of those days of pain, as you mentioned, but going from 20 to 30 days to five is a pretty significant improvement, and the most successful option you’ve tried thus far. But that doesn’t mean you wanted to get pregnant when you stopped taking the pill. So tell us, how did you manage the fear?

Annie: Well, like I said, it was really helpful to have the support, the group of other women who were also tracking their cycles and learning at the same time — just knowing I wasn’t alone. I know I probably could have joined some online community, but actually having real stories of other people, faces, and forming those relationships was really helpful. And I think once I started to see the data — I’m actually a data scientist in my career, and a friend said to me, when I was talking about maybe going off the pill and starting to track my cycle, “Annie, you’re a data person, that’ll be great, you’ll learn.” So I do have to say, starting to see the data — getting to look at other women’s cycles, but also doing my own tracking, even just temperature, has been really comforting to me, to see that I can see a pattern and then trust that pattern. Obviously I need training to learn, but just starting to see the patterns, and the repetition — I think I’ll need a few more cycles before I’ll be comfortable. And it’s also really nice to know that, I think I always felt like, oh, I’m using multiple methods so I’m being extra cautious — so now to be able to trust fertility awareness as a method, in addition to whatever other methods we’re using for protection, I feel like I’m doing as good a job covering my bases. So it hasn’t actually been nearly as scary as I thought it would be, and I feel so much better, and I’m just relieved, because I would like to have a family someday, and so to also feel like I’ve started the transition to being in a healthy place, so that when I do decide I’m ready, my body will also be ready — it feels like the right move.

Lisa: Yeah, well, and thank you for sharing that. And I think certainly it is possible — women do this charting thing, and they do it successfully, and as long as you understand how to manage your fertile window, as long as you understand the rules of whichever charting method you use, and as long as you’re clear on your intentions, and you and your partner have sorted out how you’re going to manage those fertile days — because you have obviously pulled the goalie when you’re not on a hormonal method or don’t have an IUD inserted — but it’s doable, and that’s part of the reason I like to share these stories, so women can hear, you can do it, this is doable, sure you’ve got to take some time to learn it like any other important skill, but it can be done. And this is also helpful for me, to have the opportunity to give you the platform to share your experience, because unfortunately I hear stories like yours all the time, and I was saying in our group call that good thing I have the podcast, or I’d probably be standing on the street somewhere screaming at somebody, because I’m so frustrated that women have to continue to go through all this stuff — it’s not rare. So Annie, you might feel like your experience — I mean, everyone doesn’t have vulvodynia and have your experience — but you might feel like you don’t know anyone personally who’s had this experience, but there are women listening who have, or something similar, and it’s a lot more common than we would think. But the only challenge is, where would you even hear about it, where do these women who have these experiences go to explain it? It’s usually if you find an online group or a blog, those are kind of our modern-day ways of connecting. But rest assured, you’re not the only one who’s had an experience like this.

Annie: Well, I was just going to say, that’s part of why I wanted to come on your podcast, because listening to your other episodes about this issue, even though the stories were a little different from mine, that in itself was really comforting to me, because there are other people, and someone talking about this and who knows about it. And also, being someone who really trusts the research process and believes that we need to see something consistently, studied — there needs to be real scientific research in this area. And I think that collecting the qualitative stories is really important to making a case for the scientific community to focus on these issues. And I think that my generation, we have way more women who have been on hormonal birth control for a long time now, and some of this stuff is kind of new, and I think hopefully you continuing to talk about it with people will push for that to be a priority, so that then I don’t go to a gynecologist and they don’t know what I’m talking about, or —

Lisa: Or they call it an emotional issue. And so — yeah, I’m still on that, apparently I can’t let it go — but if there was one hope I had for doing these types of episodes, it would be that at least doctors, healthcare professionals in general, who deal with painful sex, vulvodynia, pain in the vulva area, sensitivity in the vulva area, hypersensitivity, et cetera, at least have it on their radar that it could be related to hormonal contraceptives — that it’s one of the bullet points on the possible reasons. Because obviously it’s not always going to be related, but at what point are we going to stop assuming it’s psychosomatic? So if there was one thing, it would be that. And certainly it would be nice to shift — I understand the importance of the scientific process, but the fact that there’s little evidence, well, I’m not even saying that’s the case, because there are research studies about the link between birth control and pain, obviously not as much as we would like — but my point is that the lack of evidence in and of itself does not prove something doesn’t exist, or that there’s no link. But unfortunately, we often look at certain cases as anecdotal and don’t give it a lot of validity. And so, that’s why I’m here — I mean, a podcast isn’t scientific, but if you interview a bunch of women and they tell you their honest stories, are you just going to ignore it, or are you going to actually listen? It’s up to you, the choice is yours.

Annie: Yeah, you’re aggregating a whole body of stories that prove —

Lisa: Well, and I don’t have to prove anything — you listen to the story and then you make your own decision, they speak for themselves. And obviously the point is every woman’s story is unique, but there are a lot of common threads, and unfortunately those common threads are often not being believed, not being understood, not getting the right diagnosis or treatment right off the bat, being minimized. And fortunately in your case, you managed to be steered to a practitioner who was able to point out one of the most significant contributors. But for many women, it’s literally midnight Google searching to find an answer, and we deserve better than that — we have this whole gigantic medical system, and I have to go to Google to find my answer. So anyways, I’ll leave that there. As we wrap up today — I mean, we didn’t get to any fertility awareness knowledge, usually we get to a couple of questions, but I think that’s okay, because I feel like it was really important to spend some time going through your story, and these are my favorite episodes. But as we bring our episode to a close, for a woman who is on birth control, didn’t have the same challenges as you, maybe didn’t even have side effects she was aware of, but she’s thinking about transitioning and she’s totally with you in terms of the fear part of the conversation — what, if anything, would you want her to know?

Annie: I think I already said it — but also, I’ve had this said to me, and it took some convincing — that you can do this, there are many women who are doing it, and you deserve to make that choice about what you’re putting in your body. And it’s really not even that hard. And the other thing is, you learn all these other things about your body, and that’s super valuable — the way you’ve talked about it, it gives you a pulse on your total health, if something is wrong your cycle is going to be wrong, and it gives you a way to monitor your whole body, which I think is incredibly valuable. And it’s cool, it’s kind of fun. So really, really not that hard. I was intimidated, and I also thought it was old school — I come from a Catholic upbringing, and I was like, no, that’s what they used to do, that’s not — but it turns out our bodies are kind of the same as they’ve always been, and a lot of people have figured this out, so you can trust it.

Lisa: I love that. That’s really awesome, I love that you said that. It’s interesting because our bodies — I mean, there are some differences because of pollution, et cetera — but our general physiology is actually the same as, you know, grandma’s potentially used these methods. Well, thank you so much, Annie, for being here today, this was such a treat. So thank you so much again for sharing your story, and I’m really excited to share this episode with the listeners.

Annie: Thanks so much, Lisa.

Lisa: Thank you for listening. If you enjoyed today’s show, please share it with a friend. You’ll find the show notes page for today’s episode over at fertilityfriday.com/346. I hope that you enjoyed my conversation with Annie — what a powerful story. So thank you once again, Annie, for coming on the show and sharing your experience. Vulvodynia is becoming more common because, as Annie was sharing, more women have been taking hormonal contraceptives for a long time, and many women are affected by the drop in hormones they experience while on contraceptives, particularly the drop in testosterone. And I think one of the most compelling parts of Annie’s story was when she shared that her doctor concluded that the infections she had — and she didn’t have a history of chronic infections, and got this infection shortly after she had the IUD, so it indicates there’s a possible connection, we can’t say for sure, but certainly if you’ve never had episodes of bacterial vaginosis and all of a sudden you have it, and it corresponds with when you had your IUD, you can’t rule that out as a cause — but the doctor concluded that the experience with these infections somehow caused her to have such severe stress in her body that it’s now causing constant pain, and at no point did the doctor even ask if it could be related to birth control. And I think that’s more of a systemic issue, because many practitioners are not necessarily trained about all of the very common side effects that women experience, and that’s been my experience when I do interviews with doctors. But I suppose the most frustrating aspect of that is essentially the doctor looked at this physical pain Annie was experiencing and attributed it to an emotional cause — essentially saying that she’s stressed and tense, and she just needs antidepressants. And so there certainly could be something I don’t understand about the application, other than antidepressants in a situation like this, but on its face, it looks like — what do you mean, you’re putting someone on antidepressants when they’re complaining about pain in a specific area of their body? And if a man had pain in his body, would you be putting him on antidepressants because you think it’s an emotional issue? And then it didn’t actually work. And it turns out that the most effective strategy and solution that Annie has adopted thus far has been to just try coming off hormonal contraceptives. And I can still remember our first call together as a group, shortly after Annie had come off contraceptives, and she, for the first time in a very long time, had significant relief from the pain. So I felt the need to highlight that aspect of our call, to share the encouragement I’ve been sharing since the beginning, which is trust your intuition. And if you are experiencing painful symptoms and your practitioner isn’t taking you seriously, or your practitioner recommends something but that recommendation isn’t actually working and you’re not really experiencing any improvement or benefit, don’t fall into the trap of thinking that it’s in your head. It’s not. You’re the one who knows more about your body than anyone else ever will, regardless of how many degrees are on the wall — you live in your body every day, and you’re the one who’s really going to know the most about how you feel and what’s normal and what feels off. And it is challenging in our current medical paradigm to actually get that support, for a variety of reasons — not least of which that sometimes your practitioner isn’t necessarily making the connection between hormonal contraceptives, even in the case of having that bacterial vaginosis and being put on medication that then causes yeast. Many women have that type of reaction when they go on any type of birth control, because of the effect it can have on your vaginal microflora. And again, that’s not always the first thing your doctor is going to tell you — it’s typically, “here’s a prescription for an antibacterial or an antifungal.” So it’s really up to us to advocate for ourselves and really get the care we need. And I think Annie’s experience really shows that for some women, fertility awareness is an option for a variety of reasons, but for others, it can mean the difference between living in pain with really significant negative side effects, versus being able to overcome those. And of course there’s an argument to be made that maybe some women are more sensitive to hormones, but hormonal contraceptives affect all women — the way they work is by suppressing our natural hormone production, so it’s not a question of if it’s going to affect you, it’s a question of how it’s going to affect you. And not everybody experiences the same symptoms, but it’s important to know that if you do a blood draw on a woman taking hormonal contraceptives, her testosterone is going to be extremely low — 50% or more lower free testosterone than a woman who’s not on hormonal contraceptives — and her natural estrogen and progesterone are also going to be very low. And these hormone levels most resemble the hormone levels of women who are in menopause, past the point of ovulating normally. And so, of course, they don’t put on the pill pack that hormonal contraceptives put you into a state comparable to an artificial chemical menopause, because that’s not going to roll off the tongue and result in heavy product sales — but I feel like it’s always important for us to understand this. It doesn’t mean never use the pill or the patch, it just means that it is what it is, it does what it does, and we should at least be aware of that, so that if we do experience certain symptoms related to these changes, we can at least be aware. And so I’m always saying basically the same thing, because someone has to, and someone has to put this information out there, because in many cases, it’s forums like this podcast, blog posts, online groups, different communities of women who have had similar challenges getting together and sharing this information independently — it’s often those kinds of sources that are really the respite for women who are struggling and can’t get answers through the regular medical paradigm. So I felt the need to take some time and go through some of those things, because for whatever reason, that aspect of Annie’s story really struck me — it’s such a stereotypical “it’s got to be emotional” reaction, and I just really don’t resonate with that at all, and it actually makes my blood boil. So I’m sure I’m not the only one, but I’ll leave it there. I want to thank you for tuning into today’s episode, and if you know someone who could benefit from hearing this episode, please do share it. Again, you’ll find the show notes page for today’s episode over at fertilityfriday.com/346. And otherwise, have a wonderful week, whenever you are tuning into the show — and of course, as always, until next time, be well and happy charting.