r/gettingoffHBC

Hello!

So for some context, I’m 33 years old and have been on the combo pill for about 9 years. I have been considering getting off the pill for a while and may do it within the next month, if I don’t chicken out.

My main reasons for starting it were bad cramps and, a bit later, for my skin. My skin was not terrible, but it was persistent enough for me to seek a pill option that targeted acne.

Anyway, so those are the things I’m most worried will come back if/when I stop the pill.

My reasons for stopping are mostly health-related as I think it may be causing some issues.

All this to say…I have already read all the horror stories. Please please share your POSITIVE (or at least mostly positive) experiences with stopping the pill!

Thank you!

I’m sharing this as a personal experience and broader reflection on how post-birth-control symptoms are often handled medically.

I have spent the past few months thinking about how to write this without sounding “crazy,” dramatic, emotional, or hysterical, which is interesting in itself, because I don’t think men are taught to preemptively defend their sanity every time they describe a medical experience.

But women are.

Especially when the symptoms involve hormones, mood, the nervous system, fear, intrusive thoughts, insomnia, or anything else that can conveniently be collapsed into the word “anxiety.”

Two years ago, I started taking Minima (gestodene + ethinyl estradiol). The pill itself already affected me badly from the beginning. I had constant nausea, migraines, felt sick most of the time, and eventually had to stop taking it because my body simply was not tolerating it well. And I thought that would be the end of the story.

Instead, a few months later, something happened to me that I still struggle to properly put into words, mostly because language itself feels insufficient for this kind of experience. People hear words like anxiety, panic, OCD, derealization, insomnia, and they automatically translate them into familiar concepts. Stress, worry, trauma.

This did not feel like that, though. I would know. What happened to me felt profoundly physical.

I remember trying to explain to people that it felt as if my entire nervous system had become incapable of producing a normal emotional baseline anymore. As if my body had been stuck in some state of chemical alarm that my mind then had to desperately make sense of afterward. The fear came first. The thoughts came later. Not the other way around. There were no triggers, it was generalized, and I did not identify with it or recognize it as myself.

Because when you are dealing with ordinary anxiety, there is usually some degree of identifiable psychology behind it. Patterns, associations. Even when irrational, there is still some emotional logic connecting things together.

What I experienced felt completely detached from context.

I could wake up terrified before even having a conscious thought. I developed severe insomnia. Obsessive thoughts. Intrusive thoughts so violent and disturbing that they made me afraid of my own brain. Waves of dread so intense that I genuinely started wondering whether I was losing my mind permanently.

And throughout all of this, every single explanation I received was psychiatric.

I was prescribed Lexapro first, which made everything exponentially worse. Then venlafaxine. Then anxiolytics. At one point, it felt as though every professional I spoke to had already decided what category I belonged in before even listening carefully to what I was actually describing. An anxious woman, a psychiatric case, another girl overreacting to stress.

What nobody seemed interested in discussing was the timing.

Why did this happen only after hormonal birth control?
Why had I never experienced anything remotely close to this before?
Why did the entire thing eventually disappear after enough time had passed?

Because that is the part people tend to ignore when they dismiss women talking about post birth control syndrome: many of us recover.

Slowly, painfully, over months or years, our systems stabilize again. We become functional again. We feel like ourselves again. Which should, at the very least, raise questions worth investigating more seriously than they currently are.

Eventually, after nearly two years, my life returned to normal. Completely normal. The anxiety vanished. The insomnia disappeared. The intrusive thoughts stopped. It was as though my nervous system had slowly crawled its way back toward equilibrium.

And because nobody had ever connected the experience to birth control in the first place, I later trusted another doctor and started Slynd.

At first, everything seemed fine. Then came the migraines with aura. So I stopped again.

And then, horrifyingly, the exact same psychological and neurological collapse began returning piece by piece. The same fear. The same insomnia. The same unbearable physical anxiety. The same obsessive intrusive thoughts.

That was the moment I stopped being able to dismiss the connection myself.

What frustrates me is not that medicine does not yet have perfect answers. I understand that science evolves slowly, that anecdotes are not clinical trials, that correlation alone does not prove causation.

What frustrates me is the arrogance with which women’s experiences are often discarded the moment they fall outside currently accepted frameworks.

There is technically recognition that hormonal contraceptives can affect mood. There is recognition that they alter neurosteroid pathways, stress responses, neurotransmitter activity, inflammatory processes, and hormonal regulation. There is recognition that some women experience severe psychiatric symptoms both during use and after discontinuation.

And yet when women actually describe these experiences in real life, they are still so often treated as unreliable narrators of their own bodies.

It reminds me of how medicine has historically handled countless issues affecting women: first dismissal, then minimization, then decades later a reluctant acknowledgment that maybe something real had been happening all along. And I think one of the cruelest parts of this experience is the uncertainty. Because when your tests come back “normal,” when doctors tell you this cannot possibly be happening, when nobody around you understands the depth of the terror you are living in, you begin questioning your own reality constantly.

You start wondering:
Am I developing schizophrenia?
Am I permanently damaged?
Will I ever feel normal again?
Did I somehow break my brain?

People underestimate how dangerous that uncertainty becomes when someone is already in such a physiologically fragile state.

Not everyone survives this experience emotionally.

And no, I am not saying birth control is evil, or that every woman will experience this, or that millions of women who take it safely are lying. Obviously not.

But I am saying that women who experience catastrophic nervous system and psychiatric symptoms temporally associated with starting or stopping hormonal contraceptives deserve far more curiosity, investigation, humility, and compassion than they currently receive.

Because being repeatedly told “it’s impossible” while living through something this severe does not calm you down. It isolates you. And the isolation becomes almost as frightening as the symptoms themselves.

If you are experiencing something like this, you are not crazy, and you are definitely not alone.

Sometimes I think about how many women are probably living through this right now without ever making the connection. How many are being told they are simply anxious, unstable, overreacting, mentally ill. How many are questioning their sanity in silence because nobody around them recognizes what they are describing.

And then I think about how many women are about to go through the same suffering without even knowing it is a possibility.

That is the entire reason I wrote this.

Not to scare women away from birth control. Not to claim that every symptom is caused by hormones. But because WOMEN DESERVE informed consent, and informed consent includes acknowledging experiences that medicine still does not fully understand yet.

And above all, because people deserve compassion while they are suffering.

If you are going through this, please seek support. Therapeutic help can still be extremely important, especially when dealing with the fear, isolation, OCD symptoms, intrusive thoughts, and emotional exhaustion that experiences like this can create.

And if you need someone to talk to, you are also welcome to message me.

No one should have to navigate something this frightening completely alone.

Warning: long read. I want to share the story of tapering off birth control with other women who are interested.I will be providing check-ins for this process along the way as well. Here it goes: I have taken oral birth control (Ortho-Tri Cyclen) for almost 18 years....eighteen years. I began when I was 12 and am almost 30. I was an early bloomer and had my first menses when I was 9 years old. By the time I turned 12, I was having severe period cramping and very heavy bleeding. Of course, the answer to those problems was simple, begin hormonal birth control. The hormonal birth control never really alleviated the horrible cramping or the heavy bleeding...but I kept on. Around 18, the cramping got worse and an OBGYN proposed ovarian cysts and/or endometriosis. After an in-depth laparoscopic procedure, it was determined that I did have ovarian cysts, PCOS specifically. This was interesting to me as many women who have PCOS find relief with hormonal birth control methods, but again...I kept on. Around the age of 21, I decided I wanted to give my body a "hormonal break." Birth control zapped my libido (a problem I still very much face). Not cool for a woman in her 20's. So, one day, I just didn't start a new pack. Over the course of 6-12 months, I became severely depressed and anxious, lost a concerning amount of hair, developed migraines, became very emotional, and my skin was covered in acne. Needless to say, I went back to HBC feeling defeated, but aware that my "problems" could be quickly fixed. Fast forward to the age of 23. Routine bloodwork at my annual physical revealed an insanely high platelet count. Repeats of said bloodwork were ordered immediately and resulted in the same values. I was then referred (very quickly) to a hematologist. Many tests were performed and ruled that I had critically low B12 and iron. Unfortunately, I could not take the prescribed iron and B12, so the issue persisted. Every year I would be informed that my platelet count was high and I'd move on without putting much thought into it, until last year it hit me: "what if this is caused by my birth control?" I dove in and began reading articles of the impact birth control has on absorption of B12, iron, and many others. Not to mention the known effect it has on platelets. So, I decided to perform my own experiment: (I do not claim this to be a good idea, but it did work) Before my next round of bloodwork, I would take aspirin for a few days prior to see if it caused my platelets to fall into a normal range...and it did. This really solidified that my problems were being caused by birth control. So, I confessed to my doctor what I had done and the research I had been independently collecting. She was intrigued, but also concerned and suggested it may be time to stop taking the hormonal contraceptive. I panicked immediately. I knew the effects this pill was taking on my body was scary, but so was stopping. I had stopped once before and the outcome was horrific. I couldn't go through that again. So, I told her to give me until the following year (this year) to come up with a plan. I immediately began doing deep internet dives to find what other women had done to prevent wreaking havoc on their bodies by stopping. Then I stumbled upon a forum that told the story of tapering. A woman reported tapering off of her birth control and having minimal side effects. So I tried to research as much as possible on this method, only to quickly realize this method isn't talked about in depth much. I read several discussions of people asking about it, only to be met with criticism and mockery. My husband and I discussed that this would be the best option, but I was open to an opinion from my doctor. At my annual this March, I told her everything and brought as much documentation with me as I could. To my utter shock, she agreed! So, April the 6th I began my tapering journey. My doctor and I discussed the plan and it is as follows: for two months I will take 3/4 of all pills, two months of 1/2, and two months of 1/4. I was not thrilled with the idea of it taking 6 months, but if it keeps me sane and confident...so be it. I am now a month in from taking 3/4 of a birth control pill every day. The first week I had quite a bit of irritability and throughout the month, sporadic headaches, but nothing that I couldn't manage. And my period? Right on time and less painful. I'm excited to see how this goes and how my body will react. I am aware that many claim this method as "unnecessary" and "confusing" to the body, but taking away a medication that my body now relies on after 18 years is much more unnecessary and confusing. Here's to hoping I can cut the ties of birth control once and for all!

I have been off of birth control since January and have not ovulated or had a period since. I do have an appointment with my OBGYN, but am panicking about all the things that could be wrong. I got on birth control at 16 and am now 26. My periods were irregular before but I always talked it up to being because I was very active. I currently do not have a diagnosis of PCOS. Has anyone ever experienced this? What tests should I request at the doctor?