post birth control syndrome symptoms

Is Post Birth Control Syndrome Real?

I am not anti-birth control. In fact, I used the pill for a decade myself and am grateful I had access to it. Today was a very important day here in the United States, it was our day to have our voice be heard and cast a ballot that could forever move women's health care forward. And interestingly, I was contacted by a Canadian reporter, Sharon Kirkey from the National Post, about our free online women's hormone conference that is aimed at helping women understand their body, how to work with their doctor and the potential side effects of birth control. We are raising awareness about post-birth control syndrome and birth control related side effects so that women can stay safe if they decide this is the best choice for them. And of course, she asked if post-birth control syndrome is real.

Here's what she asked me during our call, along with social media questions regarding the topic that I received…

Is there an actual diagnosis code for post-birth control syndrome?

No, there is no diagnosis code for this with regards an ICD10. Like many syndromes, it is descriptive and serves to work towards a better understanding. There is plenty of research to support the symptoms women have when they stop birth control, but with regards an actual diagnosis code for PBCS, one has yet to be established. It is a descriptive term for what women report about their experience when they come off of hormonal birth control.

What do you say to critics who say that when women stop birth control they just return to their normal, which is the symptoms they had before they started birth control? That doesn't necessarily make a syndrome, right?

Between the studies and the number of women reporting that they do not return to a “normal” state I think we can acknowledge there is more to this story.

For example, with the case of elevated sex hormone binding globulin (SHBG), researchers have shown that women who have ever taken birth control have elevations in SHBG that persist even after they stop. These levels are higher than women who have never taken the pill. This leads to decreased levels of testosterone, which can impact mood, libido, muscle mass, bone health and more.

In Jerilyn Prior's work, she has stated that hormonal birth control given at a young age can interfere with the maturation process of the hypothalamic-pituitary ovarian connection. She has hypothesized that when women come off of birth control this connection will need to be re-established and that it can take time to resume ovulation and menstruation in some cases. I think this is important for us to reflect on and consider in our understanding of birth control. We certainly need more research to understand this and it may explain what some women report when they stop birth control.

Additionally, many of the clinicians that are part of this event have reported observing new symptoms in women who come off of birth control. And there are many women who report that they have new onset of symptoms after stopping birth control. Some of these things, like post-pill amenorrhea, have been documented since the 1970's in the research. We see women who have had regular menstrual cycles then begin the pill and when they start they lose their period all together.

Similarly, there are women who enjoyed clear skin before starting birth control. Once they stop, they see the onset of acne, cystic acne and other skin symptoms.

What do you say to doctors that think you're raising fear and telling women she shouldn't use hormonal birth control, which is her right?

I believe it is absolutely every woman's right to have access to birth control and choose what is best for her. I used the pill myself for ten years and I am grateful I had access to it. Who am I to judge another woman?

It is our aim is to dispel fear and remind women they have the power to heal. Educating women is exactly how we dispel fear and help women feel more comfortable with their decision. Keeping information from women and ignoring their concerns is how fear builds. This conference is aimed to help women get the information they need to feel confident about their health care decisions.

I think every woman needs to make an individualized contraceptive decision that she ultimately feels is best for her. As doctors, it isn't for us to judge a woman based on what she feels is best for her body. Some of my patients choose to use hormonal birth control and I support them in that. We monitor symptoms, labs as needed, and make sure she is as healthy as possible with her contraceptive choice. This isn't about what I want, this is about what the patient wants and supporting what is best for them medically.

I'd really like to see more discussion about birth control side effects, what to monitor and how a woman can support her body as part of the information she's given about her contraceptive choices. I also think it is important to do a thorough family history to understand if she is more at risk for side effects like stroke, heart attack, cancer, and autoimmune disease

 

Are you saying birth control causes all these issues in women?

In much of the research, we can only say correlation and association, we can not use the term causation. We need a more research and high quality studies to say something causes a negative outcome. With birth control, it is recognized that it does cause negative side effects, but at the same time, we have to understand that some of these issues are what a woman has been predisposed to. Reading the package inserts on these can help provide insight into what is known about birth control side effects.

I think the most important thing we can do as doctors is provide the full story about what is possible and support our women in their decision. And when side effects arise, we need to practice humility and curiosity that what that woman is saying may be true for her despite there being a lack of robust research. There are so many times in medical history where women have been dismissed or even deemed “hysterical” and been subjected to horrendous treatments while their personal stories and experiences were dismissed. Again, humility and respect for the patient's story are a big part of being a clinician.

What about those who say that birth control is beneficial to certain cancers?

Oh, absolutely. We see with ovarian and endometrial cancer rates, for example, are lower in women using hormonal birth control. Again, this is why we need to have individualized discussions about what is best for the patient and leave our bias at the door. There is research supporting both the benefit of birth control, the potential dangers and medical gender bias. It's a lot to navigate for the modern doctor, but the challenge is what makes medicine so interesting.

And we have to think about how insulin dysregulation and glucose levels can lead to endometrial cancer. Hormonal birth control can lead to elevations in glucose and insulin and inflammation issues. It's worth a pause to consider how this can affect a women in the longterm, not just in the moment in your office.

Not sure about this? Read here and here.

Are you against working with medical doctors (MDs)?

Absolutely not. I love me some MDs. I think they are an essential part of our health care system and am so grateful for their training, expertise, and partnership.

I have MDs as part of my health care team, along with my family. My son has had MD pediatricians as part of  his health care team and I have always loved their input and perspective on his health.

I recognize there is a growing trend to hate on MDs and blame them for the current state of health. I don't think that is fair. They went to medical school to help people and they are among some of the most brilliant minds in the world. So no, I'm not against MDs and I don't think anyone should be really.

So, you wouldn't tell a woman not to see an MD?

That seems like a bit of a ridiculous question. Is there anyone in medicine who is better trained in acute and urgent care? How about cancer therapy? I mean, the idea that there is an ‘either or scenario' happening in medicine is ridiculous. Many of my patients see me and an MD as part of their team. And then they have other allied providers like a counselor, physical therapist, nutritionist, and others who can help them address their specific health concerns. Some of my closest friends are MDs so I wouldn't dream of discrediting such valuable health care providers.

I've written and spoken about my respect for the journey and position of the MD. I'm not sure why anyone would think I'd advise against seeing a medical doctor.

Do you have any MDs who are part of this event?

Yes, we have Dr. Shawn Tassone who is an MD, PhD and OB/Gyn. We have Dr. Anna Cabeca who is a triple board certified OB/Gyn. We also have classes with Dr. Maya Shetreat, an MD neurologist, and Dr. Vincent Pedre, MD.

Participants can also attend classes with Dr. Izabella Wentz, PharmD, Dr. Tony Youn, MD, and Dr. Jessica Peatross, MD. And we also have many classes with other health care allies to support women in a variety of ways. I think our pharmacists have a lot to share about what they see with the medications doctors prescribe. I'm really excited for Dr. Izabell Wentz's class.

We welcomed all physicians who wanted to volunteer their time to teach women about their health.

What do you say to critics who say post-birth control syndrome isn't real?

You know, I've been in healthcare long enough to see the trends of dismissal, name calling and then eventually acceptance that I'm not surprised. I can remember a time when anyone who recommended eating probiotic rich foods or gave probiotics was called a quack. I remember when we were taught that the microbiome was a bunch of freeloaders who did very little beyond making some B12 and vitamin K. And now look at where we are at with the research and recommendations. And the same people who called it quackery now prescribe probiotics. I think it is perfectly fine to be critical of new things, but again, we need that humility to admit we don't know it all.

 

Leaky Gut, Adrenal Fatigue, and Dismissing Patients

Then there is leaky gut and adrenal fatigue. Certainly not the best of terminology, but that is the way things begin. They begin with naming it, exploring it, questioning it and then arriving at a better understanding. Leaky gut is now termed intestinal hyperpermeability, which was an important breakthrough for veterans and the general public. Adrenal fatigue, which I've written about not being a real term, is now recognized as HPA dysregulation in the literature. And in time, post-birth control syndrome will likely have a more precise language and understanding. The reality is, it sometimes takes us decades to arrive at a place in medicine where we have this understanding, which is a long time to leave women to struggle. On one hand their is the research and on the other, there is a real human who is in pain. We have to figure out a way to support more women while the research is conducted.

Look at irritable bowel syndrome as an example. Once written off, but now we are understanding so much more about the mechanism of action and how there are so many more factors at play then just being stressed, anxious or it being an issue with our mind.

And to the critics who say women's experiences aren't real, I just have to say, “how do you know?” You don't live in her body. She's the only one living in her body so if she says this isn't normal for her, that what she is experiencing is real then who are we to dismiss that? In fact, that is an opportunity to dive deeper into her experience, to do the research and to gain understanding. This is how we learn in medicine.

I also recognize that anyone who questions the status quo or asks if we can do better is often called names. I mean, is there anything more telling about a bias or inability to engage in a productive dialogue than calling someone a name? “Quack.” “Idiot.” I mean, I could keep going and tell you that I've been called them all. But I stay curious. I stay humble. And I stay dedicated to supporting women. You can be skeptical and listen at the same time. They are not mutually exclusive. Seriously, is there anything that undermines the scientific method more than making up your mind, shutting down to new ideas, and dismissing new findings? In this arena, women's stories give us the what we need to explore further to improve on what we know.

 

Do you think everyone needs supplements or that should be the first therapy for women?

The first therapies depend on what is going on, but it is my philosophy that diet and lifestyle first before supplements. That means eating in line with what research has shown—plenty of vegetables, high quality protein, healthy fats, and individualizing it based on the person's needs. There is so much debate about what the best diet is for everyone, but the reality is that our dietary needs can change based on our current state of health. We address this during our week of classes.

And it is well recognized that certain medications deplete nutrients. Metformin is recognized to deplete B12, so you'll likely need a supplement if taking it. The pill depletes a number of nutrients, including folate, B12, zinc, selenium, magnesium and more. You should always aim for dietary support first and then bring on supplements if necessary. But as I have said many times, you can not out supplement a poor diet or lifestyle and so those must be the foundations that are first addressed.

What supplements are you recommending for this condition?

Ever single speaker addresses diet and lifestyle first. It is well recognized that hormonal birth control depletes nutrients, which means having your diet dialed in is very important. If you're on birth control or coming off, one consideration is to begin a quality multivitamin or prenatal to help support what is being lost. This has been recommended by many experts, especially when we consider that folate is depleted, yet needed for baby before we even know we're pregnant.

You'll find in much of my resources I talk a lot about food therapy. My background is in nutritional biochemistry, so I am very much about working with diet first.

There is a problem with offering medications and supplements first in certain conditions. The question should always be, what can this person do every day in their life to improve their health and not need a doctor. There is a time and place for doctors, but there is also so much power in the individual's choices that can make them feel empowered, rather than disempowered.

What's your aim with the post-birth control syndrome awareness week?

We want to inform women so they can have a more educated conversation with their licensed health care provider. We want women to understand how their body works, how to support themselves with diet, lifestyle, and mindset practices so they can thrive. And we want women to have access to birth control, know the full story about it, and get support with the issues that can arise. We, the speakers and I, very much believe women deserve to have all in the information about their health and birth control so that they can feel 100% confident in their decision and get the help they need when symptoms arise.

What do you think about the critics who say your entire lineup of speakers are white and don't serve people of color?

People are saying that? Do they know I'm not white? I mean, seriously, that is offensive to assume I'm white and discriminate against me based on your perception of my skin color. Wow.

As a Latina, I am frankly baffled. And I'm sure many of my expert speakers would be taken back by this statement as well. I mean, it is pretty awful to look at someone and then dismiss them and their thoughts based on what your perception of their race is, don't you think? White or whatever, this is about science and supporting women and I'd hate to be reduced or dismissed based on what my perceived race is.

As a Latina, I have to say that I am grateful to have access to birth control. For me, using the pill was instrumental in my career. And to hear that people are dismissing me because they think I'm white, well, that is some next level stuff I guess I'm just not ready for. And it breaks my heart to hear.

Is your post-birth control syndrome awareness conference free or are you charging?

The conference is free to attend. Each day we are opening up a new set of classes for women to get access to the information they need. We also send out a conference schedule so that women can decide on which classes are best for them. And each day I am volunteering an hour alone to discussing the classes and answering questions with our participants. This is on top of responding to the comments women leave on each speaker's class.

Conference recordings are available for purchase and a portion of the profits are being donated to Period.org, which is an organization that helps women gain access to menstrual products.

Is Post-Birth Control Syndrome Real & Do They Believe Women's Stories?

In truth, I don't know if this reporter or any of the people asking me questions on social werw objective or interested in  what I had to say or thought, as much as they were interested in fitting her own preconceived narratives and agenda into my words. This reporter asked me if I was an MD, to which I said no, I am a naturopathic physician, which seemed to disappoint her. We'll see what her story says and I truly hope she comes out with a piece in favor of women, instead of something “sensational” to make her stand out.

Either way, I stand with you. Women deserve to be heard. Women deserve to have the full story. And women deserve the support of doctors. This is why I am so proud of the amazing teachers we have from a wide variety of backgrounds to support women's medicine and put the power to heal in your hands!

I make no apologizes for being a naturopathic physician, women's health advocate or a woman in general. This is who I am and the path that I've chosen. And I have no patience for anyone who would dismiss you or I based on our skin, gender, or experience.

This is what Post-Birth Control Syndrome Awareness Week is all about! Women supporting women and apologizing to no one because we don't into their perfect “box,” we don't except mediocrity as the answer to our health, and we do not tolerate having our story, our personal story dismissed.

Look, I get that I am a minority woman questioning the dogma and through critics eyes got the “lowly degree of Naturopathic Doctor.” Yes, I get that my other science degrees mean nothing to critics. Yes, I get that choosing a medicine that honors the body's ability to heal, believing women's ability to heal and is aimed at helping people thrive without pharmaceutics is viewed as the lesser. And I get that reporters feels she need to swoop in and start some controversy on a movement you are creating. Yes, you!

I truly believe there is a big change needed in women's medicine and without exception that change begins with you. I know you feel me!

You have the power to heal your body. You have the power to create change. You have the power to empower other women to heal too!

Thank you for being here.

Thank you for shinning so bright.

Thank you for owning your power and your truth.

You're an exceptional creature and it is an honor to share this journey with you!

Let me know in the comments below how I can keep supporting you and what you need. Regardless of what anyone says or question, I'll be here for you to keep writing and citing! Clinical experience + your story + science = big change in medicine and your health.

 

 

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About The Author

Dr. Jolene Brighten

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Dr. Jolene Brighten is a Functional Medicine Naturopathic Medical Doctor and the founder of Rubus Health, a women’s medicine clinic that specializes in women's hormones. She is recognized as a leading expert in Post-Birth Control Syndrome and the long-term side effects associated with hormonal contraceptives. Dr. Brighten is the best selling author, speaker and regular contributor to several online publications including MindBodyGreen. She is a medical advisor for one of the first data-driven apps to offer women personalized birth control recommendations.