By Laura Wershler
Note: In 2009 and again in 2012, Our Bodies Ourselves posted two blog posts on the adverse effects and withdrawal symptoms that some women experience while using or quitting the birth control injection Depo-Provera. The posts generated thousands of comments from women who were having problems with the shot and were desperately seeking help and advice. OBOS invited Laura Wershler, a member of the Society for Menstrual Cycle Research and editor-in-chief of the society’s blog, to provide an update on what can be learned from the shared comments.
I am not a fan of the contraceptive injection depot medroxyprogesterone acetate, broadly known as Depo-Provera. Response to two posts I wrote for the Society for Menstrual Cycle Research (SMCR) blog about the adverse effects women experience upon quitting this drug confirmed for me that Depo-Provera poses serious risks to women’s health and well-being that have not been adequately addressed by the sexual and reproductive health community. (Please note: I do not speak for the SMCR; my views are my own.)
Between April 4, 2012, when my post Coming off Depo-Provera can be a woman’s worst nightmare was published on the SMCR blog, and April 14, 2015, when comments closed to both this and a subsequent post, more than 1200 women left comments documenting their negative experiences. The second post was a Q&A with endocrinologist Dr. Jerilynn Prior from the University of British Columbia’s Centre for Ovulation and Menstrual Cycle Research, explaining the adverse effects and offering suggestions to manage the return to ovulatory menstruation. Our Bodies Ourselves also posted two blogs on problems with Depo-Provera: Questions About Side Effects of Stopping Depo-Provera (11/09/09) and Questions Remain About the Effects of Stopping Depo-Provera (3/29/12). The OBOS posts have received over 2000 comments.
In all of these thousands of comments, there were only a very few that shared positive experiences. Many more came from women who had no problems while taking Depo-Provera but were completely unprepared for the adverse effects they experienced upon stopping. As one woman wrote:
It has been one year since I first posted about my “positive” experience receiving my first AND LAST depo shot. I’ve been following these comments religiously and they have been very helpful. Thank you. Here’s how it went for me: Depo Provera was the WORST thing I ever did to my body.
Why Do Women Stop Depo-Provera and What Do They Experience?
Women decide to stop Depo-Provera because of continual or erratic bleeding, mood issues, loss of sex drive, concern about bone health, loss of health insurance, desire to have a baby, or because, after taking it for 15 or 20 years, their doctors said they should.
Once they stopped taking Depo, many women found that these symptoms intensified and/or they started having new symptoms. The women who commented — from the United States, Canada, United Kingdom, New Zealand, Australia, and Africa — experienced heavy and continuous bleeding, extreme breast tenderness, weight gain, headaches, nausea, extreme mood swings, depression, hair loss, and damaged relationships. Some were frantic about delayed return to fertility, while others, fearful of being pregnant, had taken multiple pregnancy tests.
The short explanation for what they experience is hormonal chaos, an estrogen storm. Dr. Prior explains the endocrinology in the Q&A. Briefly, Depo-Provera suppresses a woman’s own hormones to near menopause levels. Post-Depo, the body works hard to regain reproductive function by overproducing estrogen. Because hypothalamic incoordination delays the return to ovulation, progesterone is not produced to counteract estrogen. Erratic, high, unopposed estrogen causes most of the miserable symptoms.
It was infuriating and heartbreaking to read how women of all ages — from 17 to 56, whether they had taken one shot or used Depo for two, seven, 15, or 22 years — had been adversely affected by these experiences. Some days I couldn’t bear to read another sad story or one more expression of regret. A common refrain was: If I had known then what I know now, I’d never have taken Depo.
To acknowledge and amplify the voices of the hundreds of women who shared their adverse experiences, I presented an analysis of their comments at the 21st Biennial Conference of the Society for Menstrual Cycle Research in Boston, MA, on June 4, 2015. As I said in my presentation, I believe the provision of Depo-Provera too often fails to honor informed choice or serve women’s health and well-being. I demonstrated this by sharing excerpts from the comments, organized under four main themes.
The Four Main Themes
Theme 1: Uninformed Choice
In contraceptive decision-making, informed choice emphasizes that clients select the method that best satisfies their personal, reproductive, and health needs, based on a thorough understanding of their contraceptive options. To make an informed decision, women should also thoroughly understand the implications of using each method.
Comments suggest that although most women had some idea of the side effects they might experience while using Depo-Provera, they were not prepared for the physical and emotional impact of some of these side effects, and none were prepared for what they experienced after stopping.
It was a long seven months… mood swings, depression, tender breasts. I have the info I was given with the first shot, nowhere does it indicate the possible symptoms after quitting the shot.
I am a living nightmare and I feel constantly on edge. How can this injection be legal? I am from the UK and I wasn’t given any serious/rare side effects of this injection. I feel helpless!!!
I asked about side effects and was told they weren’t very prevalent and I may just have some spotting. I had the shot at the end of February 2013. I then proceeded to bleed, at times heavy to the point of gushing, until the middle of June. That is one hundred and sixteen consecutive days, nonstop.
This is terrible and I don’t understand why the facts were not clearly outlined for me. This is serious stuff I would have liked to have considered during my selection process, but was only really told about the benefits of depo and just the bone density side effect and altered cycle.
I now am regretting taking this shot because they warned me about the side [effects] while on the shot but never warned me about what would happen after.
One commenter said:
I read the possible side effects but no one ever takes those serio[u]sly.
Another was accusatory:
To the people who are blaming the doctors, don’t. It is YOUR responsibility to get facts and ask questions before starting a treatment … it does the job, it does what it’s supposed to, so please don’t complain about the minor side effects, rejoice because you did not get pregnant when you didn’t want to be.
The vast majority of women who commented did not consider their adverse effects to be minor, but rather responsible for diminishing their quality of life. One woman, after participating in the discussion, summed up what many of the commentators felt:
I reckon there is far too little information available about this shot, and it is given too freely without the side effects being clearly understood.
Theme 2: Lack of Body Literacy
Do most girls and women understand how their bodies work? Do most know how a healthy, ovulatory menstrual cycle unfolds? The answer is no. It is common for teenagers to start hormonal birth control before their reproductive system has matured and before they understand how it works.
As I’ve written in the past, when it comes to body literacy, we are not taught to “read” or understand our own bodies. On the contrary, we are taught to distrust our bodies and accept various artificial means to “manage” them.
Several commenters were prescribed Depo-Provera for menstrual problems such as irregular periods, heavy bleeding, PCOS, or endometriosis. This drug doesn’t cure any of these conditions but may reduce or eliminate difficult symptoms while a woman is using Depo-Provera. Unfortunately, the symptoms may resurface — and possibly increase — when the shot is stopped.
Some women are confused by that old birth control adage — the pill will regulate your cycle — not understanding that while the pill might regulate bleeding episodes, it does nothing to support return to ovulation.
I was on depo for seven years… I stopped in October and started on the pill because I wanted to try and regulate my period as fast as I could, because my husband and I decided to start a family.
And some gynecologists don’t seem to know how to help a young woman achieve fertility in the first place:
When I was 13, I had one dose of the Depo Provera shot and my period has not been normal since. I am now 19 and I can maybe count on two hands how many periods I’ve had in the last six, almost seven years. My gynecologist put me on the birth control pill about three years ago and told me it will run its course and my period will regulate itself, but that’s not the case. I stopped the pill about two years ago. I will bleed on and off from time to time, but it is more like spotting. I like to think my period is going to come and be normal, but it never does.
Many commenters talked about “getting Depo out of my system.” Three months after the last shot, the drug has left a woman’s system. Adverse effects are caused by high and erratic estrogen produced by her own body.
Will the bleeding ever stop? Is it just the depo working its way out of my body? Why is this occurring and will regular birth control daily pills help regulate the bleeding?
It just seems you have to play the waiting game for this stupid thing to get out of your system.
The mood swings were unbearable though. I had horrible fatigue and felt depressed all the time, like not wanting to go out or do anything. Also very tearful all the time. I went to the doctor and told her all my symptoms, she said I would have to wait for it to leave my system.
Theme 3: Feelings of Fear, Anger, Regret, Betrayal, and Solidarity
It was hard for me to read and absorb, week after week, women’s emotional responses to their experiences with Depo-Provera.
They expressed fear:
Now I would like to go to a doctor and get a second opinion but right now I don’t have the money. I mean I’m really scared that the depo shot screwed me up so bad that I can’t have more children.
I don’t know when the bleeding is going to stop. I don’t know if I am going to go back to normal. I’m freaking out. Nervous. Scared. My fiance and I want another baby so bad. Nobody told me that the depo would do this. I will never take another BC ever again.
Here is what is killing me… I’m terrified that I am now infertile.
Anger was common:
The shot has been one of the worst things to happen to me and I’m so angry that I’m the one who decided to do this! It has [affected] the way I see myself as a mother.
I’m angry at the lack of education behind this inconspicuous injection. Had I known half of the stuff I know now I would never have walked into that room.
I’m angry that I ever accepted Depo into my body and now I’m angry to have to wean myself off. Is it heroin we’re talking about or birth control? I’m not looking forward to [the] next few months of getting Depo out of my system and finding a new birth control that isn’t made by corporate America. But I do appreciate this site and the information. Life could be worse but good luck if you think Depo is the bee’s knees.
I am so not having fun and I think depo provera is the cruelest thing your doctor will convince you to do. Hate hate hate hate hate. Curse it to hell. I’d rather be pregnant six times over that go through this again.
I regret taking this shot and I feel like a complete idiot for doing it!!
Wish I never would’ve done that to my body. I’m so messed up because of this shot. I’m calling my doctor Monday. Yeah, the shot was 100% effective of preventing pregnancy. But honestly it’s not worth it! I would have rather gotten pregnant.
Women also spoke to each other in solidarity:
Who the hell put this drug on the market? Because I would very much like to put them on Depo Provera and see all the debilitating symptoms start affecting their work and personal life the way it has for all of us. I’m terrified of starting another birth control now.
No more hormones for me. The depo is a nightmare that I have yet to wake from. Think wisely my naive ladies. Be strong, my ladies in suffering. We suffer together, mostly in silence, but we are together and will win this battle. There is an end.
These comments also carry a sense of betrayal, in part a betrayal of their bodies, but also betrayal by the health-care providers who recommended or prescribed Depo-Provera and now can’t seem to help them understand or manage the adverse effects of stopping the drug.
Theme 4: Frustration with Healthcare Providers
The second comment to my first post was from holistic reproductive health-care practitioner Amy Sedgwick:
It is amazing to me how often the repercussions of coming OFF hormonal drugs is overlooked by women’s doctors and how rarely women are forewarned of these issues.
It was obvious from women’s comments to the first post that most were getting little useful assistance from their doctors. This prompted the second post with Dr. Prior’s advice on how women might help their doctors help them. Dr. Prior and I both replied to many women, referring them back to the resources and information in that post.
How did commenters express their frustrations?
The doctors and specialists don’t have the answers, only a bill to pay on the way out of the door which just makes me feel even more sick!
I would never recommend this drug to anyone ever! The stupid doctors don’t tell you what the real facts and dangers are of this drug.
I was never told the facts by my GP that it may take up to two years to become pregnant after coming off depo provera. As a nurse I would say that it most certainly should have been the doctor’s responsibility to discuss this with me.
I went to the doctor about all my symptoms and it’s so sad how the doctor was saying it was not because of the depo when I never had these symptoms before.
The sad part is WOMEN have to go to blogs to figure out what’s going on because docs don’t give us the right info.
My ob, who administered the drug, doesn’t know a thing about my symptoms. Shouldn’t they know all the ins & outs of this drug?
To say it has been a nightmare is letting it off lightly, it has almost driven me insane, to the point of considering if life was even worth living. The ongoing breast pain, on and off swelling, sweating, insomnia, weight gain etc the list goes on. I went to specialists, doctors, family contraception centers and no one could help me.
What Can Be Done?
Are sexual health clinics anywhere doing a better job of serving women who have stopped Depo-Provera than the health care providers of the women who shared their stories? What can health care providers do better or differently to lessen the negative impacts of this contraceptive?
- Tell women exactly how Depo-Provera works and what to expect when they stop taking it. Tell them that their own hormone levels will become almost as low as in menopause and that upon stopping the drug they may experience extreme symptoms related to hormonal imbalance.
- Offer a Buyer Beware advisory for women considering Depo-Provera. In 2013, I took a contraceptive counselling course that used the book Managing Contraception on the Go by Mimi Zieman and Robert Hatcher. I found it interesting that the manual included a Buyer Beware advisory for only one contraceptive, Fertility Awareness Methods:
If Fertility Awareness Methods require such a notice then why not the contraceptive shot? The five R’s of Depo-Provera would be:
- Restrictions to sexual activity may occur due to continual bleeding, vaginal dryness and/or loss of sex drive.
- Rigorous daily exercise may not limit weight gain.
- Required high tolerance for quality-of-life threatening side effects.
- Risk of pregnancy due to high discontinuation rate among users.
- Risk of serious adverse effects upon stopping injections.
Tell women up front, “If you hate it, come back and we’ll find another method that works for you.” A powerful drug requires powerful language.
- Use the information in Stopping Depo-Provera: Why and What to do About Adverse Effects to develop a treatment protocol. Every sexual health clinic or health-care practitioner who provides the contraceptive shot is obligated to educate themselves about adverse effects. Those who provide Depo-Provera must be the ones who support women through their post-Depo experiences, or they should refer women to someone who can.
If you can’t do 1, 2 and 3, consider whether you should be providing Depo-Provera to anyone.
What Can We Learn From Women Who Share Their Bad Experiences With Depo-Provera?
The contraceptive injection Depo-Provera is causing baffling, quality-of-life threatening adverse effects for many women. Their expressions of fear, anger, regret, and frustration must be heard, acknowledged, and acted upon. Women considering or prescribed Depo-Provera deserve concrete and comprehensive information about the effects they might experience both while taking Depo-Provera and after stopping it, as well as full support from their health care providers to understand and manage the return to regular ovulatory menstrual cycles. Providers unable to meet these criteria should not administer Depo-Provera.
We invite women to continue to share their experiences with Depo-Provera in the comments below.
Laura Wershler is a veteran sexual and reproductive health advocate who worked and volunteered with Planned Parenthood affiliated organizations in Canada for over 25 years. She is a member of the Society for Menstrual Cycle Research and editor-in-chief of the society’s blog.