depo provera

Hormonal Birth Control Plus Poor Diet Is a Recipe for Disaster

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I am a 29 year old female who began experiencing a decline in my health at 25 years old. This was in 2020. At that point, I had been on hormonal birth control for nearly 10 years. I suspected the birth control was contributing to my ill-health but my doctor disagreed and continued to prescribe different forms to alleviate my symptoms. That did not work and only made things worse. When Depo-Provera was added, I completely crashed and have not recovered, nearly two years later.

When I first began to experience extreme fatigue, abdominal bloating, irritability, restlessness, and massive amounts of hair falling out, I went to my primary care doctor who could find no reason for it on basic bloodwork, except for a low vitamin D level (27mg/mL). They checked CBC, CMP, autoimmune markers, B12, a complete thyroid panel, Lyme titers, mono titers, and iron levels. Since everything was basically normal, my primary care doctor blamed it on my stressful job. At the time, I was working in the emergency room on the night shift. I was not getting the best sleep, and not eating that well either. I was lucky to eat one meal a day and then maybe a snack especially on my busy shifts. On my days off, I was so exhausted that I would eat maybe twice a day. My diet consisted of easy meals like grilled chicken, salads, granola bars, processed cereals, pizza, chicken nuggets, chips, bananas here and there, and overall not a lot of fruits or vegetables.

Enter Depo-Provera

Fast forward to the fall of 2021, after these symptoms persisted, my doctor decided to switch my birth control to the Depo-Provera shot. After taking this shot, havoc was wreaked on my body and brought me down to a level of non-functioning that I never knew existed. Over the next couple months and after taking only one depo shot, I began to experience debilitating symptoms of headaches, fatigue, achy joints/all over body pain that eventually progressed into episodes of heart-racing anytime I would change position. I also experienced shortness of breath, chest pain, difficulty swallowing, a complete loss of appetite, GI issues, brain fog, severely decreased ability to concentrate, severe restless leg syndrome, insomnia, and neurological symptoms so extreme it felt like my brain was “short circuiting” for lack of a better word.

One side of my body would become extremely numb, tingly, and feel weak without any clear deficits. I experienced severe muscle weakness, where it would feel like my body was doing everything it possibly could to keep me upright and breathing. It was so bad, I felt as though I couldn’t even grip my phone and just talking on the phone to family felt like I was dying. I could barely concentrate. I developed severe visual issues, a condition called visual snow syndrome, and still am dealing with it with no improvement. I also developed tinnitus and have a constant high pitched ringing in my ear. I am unable to handle any type of stress, multi-tasking, or any emotional upset without truly feeling like my body is dying from severe neurological symptoms. I became scared to leave the house alone because of these debilitating symptoms. I lost over 30 pounds from feeling so awful and a complete loss of any desire to eat. I would have to force myself to put in fluids or food.

Over the course of many months, I saw multiple neurologists, neuro-ophthalmologist, cardiologist, electrophysiologist, primary care doctor, ENT, TMJ specialist, otologist, binocular vision specialist, rheumatologist, had numerous ER visits, two hospital admissions. I even participated in vestibular/neurological physical therapy over the course of several months. I had multiple head MRIs and CTs of my head and neck, MRIs of my spine, and so much bloodwork looking for autoimmune causes. I had a colonoscopy, a camera down my nose to look at my throat, an audiogram, a sleep study, a tilt table test, an echocardiogram, a stress-echocardiogram, and they even attempted a lumbar puncture on me as well. Conditions such as blood clots, multiple sclerosis, any type of cancer or tumor, etc., were ruled out and the only thing they came up with was a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), a suspicion for “some type of migraine variant” and a deficiency in vitamin D and phosphorus on my bloodwork.

Could This Be Thiamine Deficiency?

Fed up and worsening, I paid out of pocket to go to a natural medicine doctor who did heavy metal and mold testing on me along with hormone testing. Nothing really turned up there and so I took it upon myself to order a full vitamin and mineral panel paying over a grand out of pocket. This panel revealed that my serum thiamine was one point away from being flagged as low (8 nmol/L). I then returned to my primary care and two different neurologists to ask if a thiamine deficiency could be the problem or at least part of it, especially after my own research and the known research that birth control depletes many B vitamins. All of the doctors told me that there was no possible way I could have a thiamine deficiency since it is added to so many foods in the United States. They also told me that I could just take a B complex vitamin if I was worried. Even after I told them I was hardly eating because I felt so sick and that when I was eating it was mostly foods like processed toast, frozen chicken nuggets, cans of soup, and other things of that nature, they still dismissed the idea of thiamine deficiency.

May-Thurner Syndrome

On top of all of the debilitating POTS and neurological symptoms, throughout my time on birth control I had complained to my GYN about persistent left sided pelvic pain. It felt like my labia was swollen and at times like something was bulging into my pelvic area. In 2019, I had a CT scan of my abdomen and pelvis done due to some GI symptoms I was having. An incidental finding on it was suspicion for pelvic congestion syndrome (PCS). The report stated that I had very prominent peri-uterine vessels and a dilated left gonadal vein. I took these results to my GYN at the time who clearly stated “PCS is a fake diagnosis and you don’t need to do anything with that.” Since I was young, in my early 20s, I didn’t take it too seriously. Again as time went on, I continued to have the pain and over the years my GYN kept changing my birth control and mentioned endometriosis and small ovarian cysts as possible causes. The birth control would help a little bit for a while but then I would have irregular bleeding and the pain would always come back. It wasn’t until after I took the Depo shot and came off of the hormones that things became worse.

I began to have severe left pelvic pain that persisted for months. I had transvaginal ultrasounds every 6 to 8 weeks to monitor recurring small cysts that they swore were not the cause of my pain. I was tested for PCOS and was negative for that too. It wasn’t until the end of 2022, that I had another transvaginal ultrasound and this one read as having a hydro-salpinx. I had a new GYN at the time who referred me to get an MRI done of my pelvis. This MRI came back as also showing “likely hydro-salpinx” on the left. Since I was having such severe pain, I was referred to a GYN surgeon who said in extremely painful cases it is recommended to take out the tube and it was pretty much nonfunctional when it was as swollen as mine. I elected to proceed with the surgery, as the pain was so extreme. Funny enough, after the surgery when the pathology came back there was no hydro-salpinx and my surgeon said he did not see any endometriosis when he performed the laparoscopy. He said he believed my MRI may have been misread since he did not see any indication of hydro-salpinx during the procedure.

As if that wasn’t enough, after the procedure I had a severe neurological reaction to the scopolamine patch they put on me during the procedure. I had so much testing for this. I was even in the hospital for 5 days with what they thought was “scopolamine patch withdrawal” even though I only had the patch on for 3 days like they told me to wear it.

Fed up and still in pain, I let it go for a few more months thinking it was just “scar tissue” from the surgery or some other easy explanation. It wasn’t until my POTS doctor recommended me to wear an abdominal binder/compression device around my stomach that things worsened so much that I was forced to figure this out. I began having severe left pelvic, hip, and leg pain after wearing this device for only 3 days. I went to the ER because the pain was so bad, but they could only find a small ovarian cyst on my left ovary. They didn’t even consider doing any other work-up. I was then sent to an orthopedic to look at my hip and back to my GYN. Neither could really give an explanation for this pain. Finally enough was enough, I went to a vascular doctor on my own accord to get this PCS, which no one seemed to take seriously, looked at.

At the vascular surgeon’s office, they did a vascular scan of my pelvis and abdomen and were quickly shocked to find that my left iliac vein was almost completely compressed causing my peri-uterine vessels to get almost no blood flow. They diagnosed me with something called May-Thurner Syndrome and said that they usually only see severe cases like mine in women who have had “5 or 6 babies.” I was 28 at the time with one previous ectopic pregnancy many years ago. They quickly scheduled me to get a stent of my left iliac vein placed, as my left leg had begun swelling bigger than my right due to the limited blood flow.

On the day of surgery, my left leg was 2 inches bigger than the right and I was in severe pain. They did a venogram with internal ultrasound and were able to tell me my left iliac vein was 85% compressed. So basically, I was getting no flow through it and hardly any return through that vein up to my heart. They also informed me that the birth control was probably masking the problem but also could have been worsening it when I was on estrogen-containing birth control. They said I was extremely lucky that I did not develop a blood clot, especially when I had taken Beyaz for several years. Now, I am on blood thinners for several months post stent, while waiting to see if this helps with my POTS symptoms at all. So far, I have not seen any improvement except that my leg is no longer swollen.

Still Seeking Answers

I don’t know if thiamine deficiency could be causing my issues, but I have not received any answers other than POTS and my recently discovered May-Thurner Syndrome. I have seen so many doctors and spent so much money with no improvement in my health. This all severely worsened after I took the Depo shot. I have been unable to work for months, was bed bound for a long time, and was completely unable to eat during the worst of my symptoms. Now, I am at least able to move around more than I was and leave the house for doctor appointments, but I am still not working and I am still searching for answers. I would like to feel better and get back to some type of semi-normal life.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Proof, Pudding, and Depo Birth Control

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In general, I try to avoid concentrating on a single type of hormonal birth control when discussing layers of rot among contraceptives. I never want to create the impression that another method might be safe by comparison. The degree of safety (or lack thereof) is not universal. A low-dose combination Pill that may be ‘relatively safe’ for most women could cause blood clots and kill another woman because each woman’s body chemistry is as unique as she is. See what I mean – I hate to even use the term ‘relatively safe’ because the risks are still so great I would never want my daughters taking even the low-dose formulations.

Now that you know where I stand, I do want to focus on one product that seems to be particularly egregious. Our recent citizens’ petition to the FDA asked for stronger black box warnings on all hormonal birth control, but also singled out the injectable birth control which I will refer to generically as Depo, with a request that it be removed from the market “based on conclusive evidence that it facilitates the transmission of HIV from men to women”.

When Birth Control Hits the Point of No Return

Facilitating the transmission of HIV sounds like a pretty good reason to remove a drug from the market, but several other problems differentiate Depo from other forms of hormonal birth control. As I began to study these differences a little more closely, it led me to question what it would take for doctors to hit a point of no return in their love affair with birth control. Surely, if they encountered a single type of birth control that posed clear risks over-and-above other available methods, they would be able to admit its flaws, right? Welp, the proof is in the pudding.

Think of it this way, you’re a doctor watching Breaking Bad (Spoiler Alert Warning – if you still haven’t had time to watch it, you should really hire an assistant). Let’s say Walter White is Birth Control. At first, you really like him. You know he’s a good person and he has good intentions. As bad things happen to Walt and he begins to make some dubious decisions, you give him the benefit of the doubt. Even when doctors see a tragic side effect in one of their patients, they’ve been told it’s rare and that’s what they want to believe.

Then, evidence starts to mount. Birth Control (and Walt) slide further down that slippery slope. By the time Walt watches Jesse’s girlfriend choke to death on her own vomit, you finally realize he might be irredeemable.

Unfortunately, there doesn’t seem to be a point where doctors can admit even a single birth control product may be irredeemable.

Irredeemable Qualities of Depo

The top of the Depo information pamphlet contains a warning in big, bold letters surrounded by a box. In other words, they’ve manipulated the text in virtually every possible way to get you to pay attention to these words:

WARNING: LOSS OF BONE MINERAL DENSITY

The warning goes on to explain that your bone loss will be greater the longer you take the product and these changes may not be reversible. It reinforces these concerns by stating that Depo should not be used as a long-term birth control solution. It even goes so far as to say it shouldn’t be used longer than two years.

That seems pretty clear and absolute.

However, Depo support groups and online forums are full of women who have been taking Depo for 10 years or more. One woman in a recent thread said she expressed concern to her doctor because she had heard that she shouldn’t be on it longer than two years. He told her, “That isn’t really true.”

It is either ignorant, negligent, or grossly incompetent for a doctor to give a patient Depo for 10 years, but to shrug off a patient’s concern while denying a side effect so clearly stated in the literature is borderline criminal.

Here’s the kicker – many of the women who still take Depo after several years continue taking it because they’re afraid of the withdrawals. Women who stop taking Depo frequently experience severe withdrawals unlike anything seen with other forms of hormonal contraceptives. Symptoms include nausea, dizziness, headaches, painful breasts, flu-like symptoms, trouble sleeping, and fatigue.

But, let’s not overlook the common side effect that happens when you receive the shot – unexplained weight gain. I suppose if there is a positive to be found in any of these side effects, it’s that many women avoid Depo because they’ve heard about the weight gain. In fact, 1 out of every 4 women who get the shot gain 5 percent or more of their starting weight. A study of more than 700 women found that women getting the Depo shot gained an average of 11 pounds over three years with a 3 percent increase in body fat. Researchers aren’t sure what’s causing this weight gain but believe the high dose of progestogen could be lowering the body’s metabolism and causing more fat to be stored.

Neither Candy Nor Supplement

I used to always say that doctors hand out birth control like candy, but it’s worse than that. They hand it out like it’s a supplement. They tell women that it’s a hormone just like their body is already making. It isn’t. That’s why I love the quote from Dr. Hugh Davis at the Nelson Pill Hearings:

“To think of them as natural is comforting but quite false.”

When you stumble across a product like Depo and see that the doctors’ behavior doesn’t change, it becomes harder to believe they are oblivious to the dangers they are promulgating. Their cavalier attitude toward these potent drugs and the damage they are doing should spark outrage in us all.

I would like to conclude by sharing the story that sparked my outrage and inspired this article. I was contacted by a young woman who asked me not to use her real name. She is a medical professional and doesn’t want to jeopardize her career. I will call her Amber.

A Bad Experience with Depo

Amber gave birth to a daughter in March. After the delivery, she was experiencing high blood pressure that landed her in the ER on three different occasions. The ER doctor on the third visit told her he thought she was dealing with postpartum depression and said he was going to give her progesterone to balance out all the lingering estrogen from her pregnancy. He advised her to go see her regular doctor the next day about her high blood pressure.

She didn’t think too much about the shot he gave her until she looked over her discharge papers and was shocked to see he had given her the Depo shot. The next morning she visited her doctor and he gave her blood pressure medication. By that evening, her symptoms had changed. She experienced heart palpitations and flutters. Her anxiety was out of control, and her heart rate was in the 160s.

Paramedics rushed her to the hospital and she was admitted to the cardiac unit. They performed an ultrasound and she was tentatively diagnosed with Postural Tachycardia Syndrome (POTS) – one day after receiving the shot.

Over the following months, she developed more symptoms. There was pressure on her optic nerve. Her thyroid was out of control. The doctors said they couldn’t even be sure whether she needed medication for a hyper- or hypo- active thyroid. They did an ultrasound and discovered two nodules on her thyroid that weren’t there when the previous ultrasound had been done. In 90 days, she had developed two nodules!

She contacted the drug manufacturer and asked them if they could provide information about side effects that have been reported with this drug (remember, she is a medical professional). She was stunned but not terribly surprised when the report she received back stated that they had received spontaneous reports of several side effects not mentioned in any literature, including atrial tachycardia, postural orthostatic tachycardia syndrome (POTS), autoimmune thyroiditis, hyperparathyroidism, hyperthyroidism, hypothyroidism, thyroid cysts, thyroid disorder, thyroid cancer, among a whole host of other side effects.

The Bad Has Broken

We see the effects of doctors and the drug industry downplaying the deadly risks of birth control all around us. A quick look at the patient information booklet along with some simple math, and these doctors would know that the U.S. loses three women every day to birth control related blood clots – and that’s just one side effect.

Then, along comes Depo. Not only does it have additional dangerous side effects but, since it is an injection, it’s even more permanent. You can’t just stop taking it when you’re overcome by side effects. It can take up to 350 days for the drug to leave your system after it’s administered.

How do doctors react to this deadlier, irreversible version of birth control? They deny the confirmed side effects and give it to unwitting new mothers. The further I get in this storyline the more I’m starting to realize our medical industry may be irredeemable.

But wait, Breaking Bad was notorious for giving us glimpses of hope, little signs that humanity may not be all bad. So…

Fade in to Amber in her hospital bed. Her Ob/Gyn heard she had been admitted and stops by to pay a visit. She tells him about the ER doctor who gave her a Depo shot and he becomes enraged. “Are you serious?!”

He calls the hospital CEO and says he is going to petition to get that doctor fired because it is not in his scope of practice.

Maybe there is hope for the medical community. Stay tuned.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This article was published originally on December 19, 2019. 

The Depo Decline

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Learning About Depo the Hard Way

In 2010, I was 32 years old, and a preschool and elementary school teacher. I was looking for birth control to prevent pregnancy. I tried several different birth control pills previously, but reacted badly on every single one of them. The pills increased my blood pressure significantly and gave me migraines. I also tried both the hormonal and non-hormonal IUDs. Each of them gave me chronic bacterial vaginosis. This persisted for the entire 6 years that I used these devices. My doctor told me that the Depo Provera shot would be a good option for me since it didn’t have any estrogen in it and I wouldn’t have those terrible side effects. She said the only side effect would be a 5-10lb weight gain. I stupidly and regretfully took her advice and got the depo shot. I wish I could take that day back because it has ruined the past 10 years of my life. I had the shot on August 18, 2010 and I still do not feel well, almost 10 years later. That shot left me with numerous autoimmune and endocrine problems. I should mention, I was healthy before all of this began.

Within a week of the Depo shot, I began feeling off and not like myself. I developed unusual and extreme hunger. I was very moody and irritable, extremely tired, and experienced daily headaches and migraines. It only got worse from there. Within three months, I gained 25 pounds.  I called my doctor’s office and told them I would not be returning for another shot. I told the receptionist about the side effects that I was having.

I began having all sorts of weird health problems that were totally out of the norm for me. As I mentioned, I was healthy prior to depo and never had to go to the doctor except for my annual check-up. I felt like I was going crazy because my doctor said “Depo can’t do this to you.” When I asked why I was having all these problems all of a sudden, she assured me it wasn’t from Depo. What was it from then? I have never been given an answer.

I have spent thousands of dollars on trying to heal my body and have seen over 20 doctors and specialists to try to find out what this shot did to me including: endocrinologist’s, rheumatologist, gastroenterologist’s, podiatrist’s, dermatologists, chiropractors, naturopathic doctors, physical therapist, massage therapists, psychologist, infectious disease doctor, vitamins and supplements. My health never returned. I’m only able to function at about 20-25% of what I was prior to depo. This is despite trying everything I do to heal my body through research and books and doctors.

It has been a decade from hell and because of all these health problems from depo, I lost my job, my family and my house. This shot poisoned my body and wreaked havoc on my mind and body. I’m 100% convinced from the newest research conducted and reading “The Dangers of Depo” book that it did irreversible damage to my body at a cellular level. My body, my mind, my thyroid and adrenals and my cells were never able to recover and heal from this shot.

This past decade has been a literal nightmare. This shot needs to be banned. I’m only writing all of this to warn other women to stay away from this poison. I wouldn’t wish what happened to me on anyone. It has destroyed my once happy and successful life.

Surviving Depo Together

Last year I started a Facebook group “Depo Provera =Endocrine Disorders” support group to help other women who are experiencing endocrine problems after getting the Depo Provera shot. In little over a year, we have 589 members. These are women who have become ill with various endocrine problems since getting the depo shot.

We are all very supportive and help each other. Most of us have family and friends that really don’t understand what it’s like to get so ill from a pharmaceutical. So it has been very comforting knowing we have each other to talk to and other women who know and understand what we are going through. That was my goal when I started this support group. I wanted to see how many other women worldwide were experiencing severe health problems from depo and offer a safe place for us to share stories, concerns, advice and anything helpful. We have an amazing group of ladies and I met some wonderful women through my Depo group. Their support and encouragement pushed me to go public with my Depo story. I’m a very private person. I didn’t want everyone in the world knowing about my horrific experience and my life crumbling. It’s embarrassing to me, but I’m doing this because I feel knowledge is POWER! The more we inform women about the dangerous Depo-Provera birth control shot the better.

With social media and the internet hopefully women will research Depo Provera before getting it and realize how dangerous it can be. Then make an informed decision prior to getting it. Had myself, and thousands of other women been informed about these issues, we would have never gotten this shot. So I’m writing this to help as many women as I can to be informed and to warn them as to what can happen if they chose to get depo.

I hope my story helps women. That is the only reason I am sharing it. I don’t want anyone to go through what I’ve been through.

Depo Provera Side Effects

Below are just some of the dozens of diagnoses, odd symptoms and lab results that I have had since receiving Depo Provera.

Diagnoses

  • Hashimoto’s autoimmune thyroiditis
  • miscarriages
  • Chronic Epstein Barr virus
  • Cytomegalovirus
  • Lyme disease
  • Skin cancer (3 times) leg, face, low pelvic region
  • Fibromyalgia
  • Arthritis in lower back
  • Degenerative disk disease
  • Bone spurs on spine
  • Facet syndrome in my low spine – I have severe lower back and neck pain
  • Autoimmune disease
  • PCOS
  • Nodules on thyroid, cysts on liver and kidney, cysts on right ovary, fibroid on uterus
  • Pre-diabetes
  • Sleep apnea and low oxygen while sleeping and trouble breathing during the day

Labs

  • Adrenal fatigue -low cortisol/ACTH
  • C reactive protein is very high
  • Sedimentation rate is very high, and indicator of high inflammation
  • Absolute basophils very low
  • Anion gap high

Symptoms

  • Food sensitivities and Food intolerances to gluten, dairy, soy, sugar
  • High blood pressure 169/115
  • Pain/throbbing in bicep/elbow
  • Throbbing pain on thyroid
  • Bloating, swollen stomach, diarrhea -IBS/D
  • Ringing in ears-tinnitus 24/7
  • Dry eye syndrome
  • Heavy bleeding (menorrhagia)
  • Debilitating fatigue, always tired, malaise, not feeling awake for hours after waking up, falling asleep a lot during the day, sleeping 12-15 hours per day, my body feels limp and I get worn out doing simple things like laundry
  • Night sweats
  • Brain fog, headaches, anxiety, nervousness, irritability
  • Getting very dizzy and passed out twice
  • Feet and hands falling asleep a lot, my fingers are stiff- right thumb freezing and won’t move
  • Teeth grinding while asleep
  • Plantar fasciitis-feet: severe pain on bottom of feet and left outer side of my foot making it hard to walk especially when I miss my menstrual cycle
  • Toenail fungus
  • Poor healing: cuts and incisions do not heal.
  • I can’t handle normal stress at all. I get very sick and then I can’t get rid of colds. My immune system doesn’t work and I end up staying sick for months and years.
  • Extreme 80 lb Weight gain
  • Iron and ferritin are deficient
  • Vitamin B low
  • Vitamin D deficiency

Basically, I am falling apart, one piece at a time, and no one seems to be able to help. Doctors mostly dismiss my declining health. The power of informed choice was taken away from me since I was not informed of the real risks. Depo carries a black box warning, which is the most stringent warning short of an outright ban. Had I been aware of this, I would have never gotten this shot. It is completely unfair, unjust, and unethical for doctors and nurses to administer this shot to unsuspecting women without adhering to their legal obligation of disclosing the very real, serious, and in some cases like mine and many others, permanent side effects that this form of birth control is responsible for.

If you are suffering with endocrine related side effects due to Depo Provera, please join my Facebook group, “Depo-Provera=Endocrine Disorders Support Group.”

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

If you would like to share your story: Contact Us.

Image credit: Wallpaper Cave.

This article was first published on June 17, 2020. 

The Depo Health Storm

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It was the winter of 2017 and life was busy. I was 38 years old, married for almost 13 years, a mother of 10-year-old identical twin girls, and an almost 9-year-old daughter. I was in my 15th year of teaching and had been a successful literacy coach for the past five. l thrived being busy and always seemed to get everything done, even when it seemed impossible. I would describe myself as strong-willed, determined, passionate, intense, competitive, a perfectionist, controlling, aware, empathetic, and more importantly, always prided myself on my resilience. Unfortunately, I would soon learn the power of Depo and how even the strongest of wills would concede to it.

The Depo Black Box Warning – Ignored

In early February 2017, I made an appointment with Planned Parenthood, specifically to get the Depo Provera birth control injection. I didn’t have a gynecologist or the patience to look for one near me, so I thought this was the easiest and quickest way to get what I needed and continue with my busy life. I’m extremely impatient as well. That moment stopped me dead in my tracks. It was February 22, 2017, and at that moment, everything as I knew it would change.

I was brought into a room and a nurse walked in. We didn’t discuss anything besides when I casually asked what the side effects were, thinking I’d hear the same things I had always heard. Her only warning was that I might spot a little but that it was normal. Then, right before she gave me the injection, she pulled out two forms and asked me to sign them without telling me what they were. I just figured it was a formality, so I signed them and never thought anything of it. It was not until about 7 months later when I looked again and saw that the forms stated that I was given Depo’s written black box insert, which is the most stringent warning short of an outright ban, and that I was verbally warned of the very serious and dangerous side effects. Months later, I learned that medical professionals, injecting Depo, are legally obligated to disclose both the written and verbal warnings, before administering the shot. The next thing I knew, she injected my right upper thigh with Depo Provera.

The Depo Storm: From Weight Gain to Total Debilitation

Within days, I just didn’t feel right. I began noticing that I was unusually moody and tired, and felt overall, puffy. Soon after the shot, I started struggling with my weight, which was highly unusual. I’m barely 5 feet tall and have always been petite, and more importantly, had always been able to control my weight. Furthermore, I led a healthy lifestyle of watching what I ate and working out often. But in only 2 months, I had exceeded my all-time highest weight. I now weighed the same as I did when I was 9 months pregnant with my youngest daughter. My concern prompted me to return to Planned Parenthood and speak with the same nurse who had administered the injection. I told her what was going on and she replied, “I’ve never heard of such a thing.” Those words repeated over and over in my head to this very day. I told myself it would be over soon and that I’d be back to my old self once the shot “wore off” in three months, which was May 2017. Well, May came and went and my symptoms only got worse. This is when I realized there was no “expiration date,” and that once Depo is in your body, you can never take it out.

Months passed, and in September 2017, my physical health took a sharp turn for the worse. I experienced memory loss, profuse sweating day and night, extreme itchiness, and frequent hives, and was very easily startled. I also developed dizziness, water retention, constipation, vaginal infections, muscle weakness, heart palpitations, shortness of breath, hair loss, no sex drive, depression, anxiety, no menstrual cycle or ovulation, bloating, dry skin, severe tooth decay, sore breasts, toenail infections, incontinence, and debilitating exhaustion.

One day at work in early November 2017, I started getting itchy hives. It only started as a few, but within hours, I was covered from head to toe in the itchiest and biggest welts I’ve ever had. I drove myself to the emergency room and my husband met me later on. I was given Benadryl and told I must’ve had an allergic reaction to something. I now know it was Depo wreaking havoc on my body…and that was just the beginning.

On November 19, 2017, I watched my sister pass away from a painful battle with cancer. This loss shook my world. My emotional stress was at an all-time high, and I quickly spiraled into a deep depression. As a controlling person by nature, I was losing all of it and fast, and that alone took a huge mental toll on me. I could no longer control my emotional, mental, or physical health, and didn’t have the stamina to do the job I was once successful at and loved. I became an emotionally unstable mother and wife, was in a constant state of fight or flight, and my exhaustion was literally beyond comprehension.

No matter how hard I fought to be “normal,” my body and mind just weren’t responding in their “normal” ways. I was unrecognizable in every way and could no longer continue lying to myself that nothing was wrong, that I was imagining all these symptoms, or that one day this poison would “be out of my system.”  Those were all lies I told myself trying to maintain some sense of normalcy and sense of control over the things I no longer had. I doubted my inner strength and resigned myself to the fact that this was the way life was going to be from now on and tried to accept that. And the only thing I felt like I had left was the memory and mourning of both the death of my sister and the determined person I identified as my entire life. I constantly reflected on the mass destruction it had over my life but didn’t have the physical strength or mental capacity to even consider addressing any of it.

Summoning the Strength to Self-Diagnose: Depo Destroyed My Thyroid

Almost one year later, in January 2018, as I sat slumped in the usual corner of my couch, in the deepest depression and defeat I once couldn’t even fathom and trying to become familiar with this new person I had inadvertently become, I felt one last glimmer of hope and truly believe my sister gave me strength, from the other side.  So, I began researching my symptoms…all of them, and they all pointed to either menopause or hypothyroidism. But I knew there was no way I could be menopausal when before Depo, my cycle was like clockwork, I ovulated every single month, and was overall, very healthy.  So, I diagnosed myself with hypothyroidism and focused all my attention there.

In February 2018, after I self-diagnosed, I decided it was time to start seeing doctors to get an official diagnosis and begin getting my health back. I noted every single symptom to prepare for my appointments, thinking being prepared would bring me closer to a diagnosis. I first started out seeing hormone specialists, otherwise known as endocrinologists. Other doctors I saw included 2 primary physicians and a rheumatologist, to rule out lupus. Well, my visits with these doctors proved that all the preparation in the world meant nothing at all. I was never heard. Instead, I was dismissed, told I was probably peri-menopausal, told I was experiencing all 25-plus symptoms because I had just turned 40. I was even told to see a psychiatrist! To boot, all blood results were “normal.” Although I questioned my sanity more than once, the knowledge I had acquired told me differently. I just knew there had to be an answer. I figured if I could narrow down the reason why I was sick, then why couldn’t someone else? So, my search continued.

I then focused what little energy I had left on thyroid research, spending every waking moment, which wasn’t much after all considering I slept most of my days away, delving deep to learn as much as I could. I took notes on my phone and bookmarked more articles than I could count. I also read the books, “The Dangers of Depo: The World’s Most Dangerous Birth Control,” by Traci Johnstone and Dr. Poppy Daniels, and “In the Name of the Pill,” by Mike Gaskins, which I highly recommend. I joined several Depo Facebook Support groups and soon learned that I was not alone.  After I became what I considered to be an “expert,” in both thyroid and female hormones, my opinion on these support groups wasn’t always the most popular, and I even ended up getting kicked out of one of these groups for providing facts!! Regardless, all of this information confirmed that my symptoms were actually common, and this gave me the motivation to keep on moving forward.

Finally, Confirmation: Thyroid Conversion Disorder

In March 2018, I was no longer physically able to care for my daughters, take care of the house or myself, or do my job, but what I could do and had control over was arming myself with even more knowledge.  But this time, my research focused on natural remedies and non-conventional medicine. This leads me to a bioidentical hormone replacement doctor. He didn’t take insurance, but my level of desperation was at its peak, and there is no price on my health. I spent thousands of dollars in comprehensive testing, over a short period, but finally got a diagnosis…the thyroid diagnosis I had given myself months prior.  My main diagnosis was a Thyroid Conversion Disorder. Other diagnoses included: copper toxicity, essential nutrient deficiencies, a mitochondrial defect, high liver enzymes, candida, estrogen dominance, and low testosterone and progesterone. And there were quite a few other abnormalities in my blood cell levels, which still have not leveled out.  To paint you a better picture, my Thyroid Reverse T3 level was over 40, when between 7-15 is optimal. This is sometimes referred to as your “hibernation” hormone, which is when your metabolism shuts down, your core body temperature drops, and you gain fat to prepare like a bear hibernating in the winter.

In mid-April 2018, I began bio-identical hormone replacement therapy, thyroid medication, and hundreds of dollars in supplements and out-of-pocket doctor visits. That wasn’t the end of my journey, however, because although I was finally given a diagnosis, my thyroid disorder is so rare, that not even hormone specialists or the best of non-conventional doctors knew how to treat it correctly. So, my search continued.

In May 2018, having seen two more doctors, spending more money, and doing more obsessive research, I finally figured out how to treat my rare condition. I took this new information to a naturopathic doctor who shockingly had knowledge and experience treating my specific and rare condition. Since he couldn’t prescribe, he worked in conjunction with a prescribing doctor from the second-highest-ranking hospital in the nation. Within a week of starting treatment, I began feeling better. However, my sigh of relief was short-lived. I wound up having issues getting my thyroid medication from the prescribing doctor, who was neither comfortable treating my rare condition, nor cared to understand it, and especially since, as my naturopathic doctor said, “We have to play a game in order to get your medication because the big wigs at the hospital will question the doctor asking why he’s prescribing medication when your levels are not in range.”  My naturopathic doctor even went as far as admitting that the prescribing doctor knew nothing about thyroid, didn’t care to and that he was manipulating him into giving me my medication, which finally started making me feel human again. I wasn’t hopeful, nor did I feel like playing a game, especially after all I had been through. But I knew that if you truly understood my condition, or cared to, you’d know my levels will never be in range again and shouldn’t be, with the medication I am on. Apparently all that mattered were my numbers, which weren’t indicators of how I felt at all.  Again, my search continued.

In August 2018, I was interviewed by a Canadian reporter, Sandra Bartlett, who contacted me on one of the Facebook Depo Support Groups.  She was working on a podcast featuring five women’s stories about Depo and asked if I’d like to be part of it. I jumped at the chance. Sadly though, it would never be aired because she couldn’t find a doctor to explain, let alone acknowledge, that Depo does in fact, cause horrific effects. During this time, I met a girl online named Gretchen, who was basically telling my story verbatim. I saw the anger, resentment, and thirst for knowledge in her and we would later team up to create a Facebook support group for those who developed endocrine disorders as a direct result of Depo.  We continue to fight for stricter regulations on birth control and tirelessly work to spread awareness and truth about the very real and serious dangers of this poison.

In October 2019, only several months ago, and after another failed attempt at seeing a well-known and highly rated integrative doctor, I decided to return to the bioidentical hormone replacement doctor who had given me my initial diagnosis in April 2018. Although he doesn’t see or acknowledge the correlation between Depo and the mass destruction it had on my mental, emotional, and physical health, I know the person I was before that day, and I know, without any doubt in my mind, that Depo Provera tried its hardest to tear me down.

Almost exactly three years to the date of my one and only Depo Provera injection, yes, that’s all it takes, I still deal with some lingering effects. Depo affected me on a cellular level by depleting my serotonin, dopamine, and GABA neurotransmitters, and ultimately caused me to develop a panic disorder, not to mention a thyroid disorder, which requires me to take medication for the rest of my life. I’d be remiss not to mention that Depo completely destroyed my oral health. Over the course of a year and a half, I had countless, and very painful, dental procedures costing thousands, and still counting.

What the Depo Experience Taught Me

The fact is, this experience changed me, but it certainly did not defeat me. It is true that I am not the same person I was three years ago. Throughout my experience, including my sister’s death, I was taught some major life lessons and am much wiser, and more cautious now. I use the word “taught,” and not learned, because this was definitely something I never expected to happen and certainly wasn’t prepared for. The first lesson is summed up in the saying,

“Every tragedy that happens in our life is not intended to defeat us but to make us stronger.”

For those going through the same thing, although you may feel like giving up like you will never again be the same, know that you have more strength than you realize, and more importantly, that you can get through this!!  Hold onto that hope and keep moving forward, even if it’s only small steps at first.

Second, please understand that KNOWLEDGE IS POWER. I attribute a lot of how far I have come to empower myself with knowledge. This allowed me to advocate for myself and my health, even when so many others told me differently. Remember, you are your biggest cheerleader and only you know yourself better than anyone else. Don’t ever question that.

And last, but certainly not least, the biggest lesson I was taught is to NEVER, EVER TAKE HEALTH FOR GRANTED because it can be gone in an instant. Sometimes that is all it takes. I thank God every day for these lessons and for making me stronger than I ever imagined. I dedicate my story to my sister, Christy, my guardian angel, whose memory gave me the will to keep on fighting and the spirit to never give up.

Unfortunately, the negligent, unethical, and blameless medical practices continue to take place, while the number of unsuspecting victims rises. Arm yourself with knowledge! For more information on how birth control affects the endocrine system, please join our Facebook group, “Depo-Provera Endocrine Disorders Support Group.”  Thank you.

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Image by Jan Mallander from Pixabay.

This article was published originally on January 5, 2020. 

Can the Pro-Choice Community Embrace a Birth Control Dichotomy?

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In 2004, when I was executive director of Planned Parenthood Alberta, I gave an introductory presentation on fertility awareness for women looking for alternatives to hormonal birth control. One young woman who’d been on Depo-Provera for five years had been recently diagnosed with severe osteopenia. After quitting the drug, she said she realized in retrospect that for those five years she had felt like she was living “under the surface” of her life.

Another told the story of how she had struggled with serious mood issues while on the birth control pill. She would stop taking it, rely on condoms and emergency contraception for a while, then visit her doctor who would urge her to go back on the pill. After a few of cycles of on-off-on, she quit the pill once and for all. She said she decided to “just stop talking to this doctor about birth control.”

I’ve heard scores of stories like these over the past 30 years, and read hundreds more from women commenting on blog posts and online articles. For decades women have stopped using hormonal contraception to improve their health and well-being. Advocating on their behalf has been a major focus of my work as a pro-choice activist.

The Birth Control Dichotomy

I’ve been a pro-choice sexual and reproductive health advocate since I was 15 years old. Today I turn 60, celebrating a 45-year commitment to pro-choice values. But I mark the occasion with frustration and disappointment because the sexual and reproductive health (SRH) community to which I belong has failed to adequately–unreservedly–serve women who won’t, don’t or can’t use hormonal birth control.

I believe that what is keeping them from doing so is failure to acknowledge and embrace the dichotomy that exists within the pro-choice contraceptive framework.

A dichotomy is division of a whole into two mutually exclusive, opposed, or contradictory groups. If pro-choice contraception is the whole, two mutually exclusive groups are:

  1. women who use and like, or want to use hormonal birth control (HBC)
  2. women who use and like, or want to use non-hormonal birth control (NHBC).

Both groups deserve equal attention, support and services to use the birth control methods they decide are right for them. But this is not happening.

Just as we who hold pro-choice values don’t judge or hassle women for the reasons they choose to have abortions, we should not judge or hassle women for the reasons they choose not to use HBC, nor try to deter them. Yet anecdotal evidence abounds that women who want to quit the birth control pill, have their IUDs removed, or learn fertility awareness based methods (FABM) are often actively dissuaded from acting on their choices. It takes extreme self-assurance to do what one young university student told me she did when her doctor questioned why she didn’t want to use HBC. Her response: “My reasons are none of your business.” She said she knew the doctor would try to overcome her objections to the side effects she refused to incur.

I believe that pro-choice sexual health advocates and care providers can and must find a way to do their work effectively within this birth control dichotomy. We must acknowledge the right of women to choose HBC or NHBC depending on which best serves their health and contraceptive needs. And it’s our obligation to help them use their chosen method effectively and confidently, without persuasion or dissuasion.

This is not being done to the standard I believe it should.

Media, social media, and the blogosphere tell us that young women are ditching HBC, but not finding much information or support from their doctors or sexual health clinics for doing so. So why aren’t SRH organizations researching this identifiable “unmet need” or offering workshops on successfully transitioning from HBC to NHBC?

A one-size fits all diaphragm is in the works, and another silicone version is on the market but incredibly hard to find, as is the spermicidal gel required to use with it. So why don’t SRH clinics have programs in place to make them more accessible to women who want them? After all, the diaphragm was the contraceptive of choice for arguably the most influential sexual role model of the last 15 years – Carrie Bradshaw.

Evidence-based medicine proves that pro-choice FABM are as effective as HBC methods, and can be used with condoms to prevent STIs and emergency contraception if indicated, just as for HBC users. So why doesn’t every SRH clinic or organization provide certified FABM training on site or seek collaborative partnerships with certified, secular-based instructors?

Bottom line? The SRH community is failing to fully meet the needs of women who won’t, don’t or can’t use HBC. The current hoopla over LARCs – long-acting reversible contraception including copper and Mirena IUDs and hormonal implants – as the next best birth control “technology” is mere tangent, not solution. Other than the copper IUD, these are still drug-based methods many women want to avoid.

Women who want to use NHBC effectively and confidently, or seek treatments for menstrual cycle problems that do not require hormonal contraceptives, are turning to care providers and information sources outside the SRH community. Is this what we want?

I don’t get it. If I can embrace the birth control dichotomy and retain my pro-choice commitment why can’t other pro-choice health-care professionals, non-profit organizations, and advocates do the same?

My pro-choice values have co-existed for decades with my advocacy for NHBC and menstrual cycle education. But I admit that because of my chosen focus, it is often wrongly assumed that I seek to deny options rather than to increase them, that somehow I cannot possibly be pro-choice.

Successfully using fertility awareness for birth control from age 27 through menopause (See p.4-5) did not keep me from serving 10 years on the board of Planned Parenthood Federation of Canada, or from bringing me back as a current board member of what is now the Canadian Federation for Sexual Health.

Promoting body literacy – acquired by learning to observe, chart and interpret our menstrual cycle events so that we become fully informed participants in health-care decision making – as a life skill that all girls and women should learn, did not keep me from being executive director of Planned Parenthood Alberta. The organization, which became Sexual Health Access Alberta and closed in 2010, distributed educational resources that included the most comprehensive Birth Control Demonstration & Sexual Health Promotion Kit still available for SRH professionals.

Sharing evidence-based medical information about the value of ovulation to women’s health and how to treat menstrual cycle disorders without the use of hormonal contraceptives, did not keep me from writing commentaries in support of abortion rights.

Within the pro-choice sexual and reproductive health community, I’ve chosen to focus on body literacy, menstrual cycle education, and advocacy for increased access to NHBC. At 60, I’m more committed than ever to promote a broader perspective within my community, one that will fully acknowledge and embrace the birth control dichotomy, one that will serve equally, without reservation, the contraceptive needs of all women.

About the Author: Laura Wershler, B.Sc., is a veteran pro-choice sexual and reproductive health advocate and women’s health critic who has worked for or volunteered with Planned-Parenthood-affiliated organizations in Canada since 1986. Laura graduated with a Certificate in Journalism from Mount Royal University in 2011. She has contributed columns on women’s health to Troymedia.com and blogs regularly for re:Cycling, the blog of the Society for Menstrual Cycle Research. Follow her on Twitter @laurawershler.

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Endometriosis After Hysterectomy

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My name is Rosemary and I have been dealing with endometriosis for the past 21 years.

I had my first laparoscopy in 1992 due to sudden onset of pain from a ruptured ovarian cyst. They found endometriois on the right side. Over the years, the endometriosis spread to the left side, bladder and intestines.

I had a total abdominal hysterectomy in 1995, when I was only 28 years old and only two months after having my youngest daughter. My daughters are miracles and I am extremely lucky to have them despite these issues. I was convinced to have the hysterectomy after the 6th laparoscopy for endometriosis. This was after the right ovary, tube and appendix were already removed and I had tried many techniques for pain management including acupuncture, acupressure, hormones, Lupron, Depo Provera, meditation and many strong medications. I would try anything, I told one doctor that I would sacrifice a chicken in the corner if that would help. Unfortunately the pain was relentless. It was and is a constant, stabbing, twisting pain.

During the hysterectomy they found Stage 4 endometriosis all throughout the abdominal cavity. Unfortunately the doctor didn’t remove the endo during the surgery. They just removed the left side ovary and tube, uterus and cervix. The day after the surgery I was given Premarin. The pain returned with a vengeance within 6 months. This is when the real “fun” started. I had to find a doctor that understood endo after hysterectomy. I have had 14 more surgeries since the hysterectomy. In each one and over ten years after the hysterectomy they found live endometriosis. The hysterectomy did not resolve my endometriosis. The endometriosis was deep in the peritoneum, along the bladder, on the intestines and it kept returning. After each surgery I would get about 12-18 months of relief.

I worked with many different doctors from OB/GYN’s to renowned reproductive endocrinologists and general surgeons who specialize in adhesions. During each surgery they found many thick adhesions gluing my insides together. I had my last surgery in Atlanta last year at the Center for Endometriosis Care and they were fantastic. I had relief for about 13 months. Unfortunately the pain has returned.

I have returned to pain management doctors. This is such a frustrating disease. I have had many doctors tell me I was “just stressed,”  or that because I am a single Mom with two daughters, I’m just depressed and the pain is in my head. I have also had amazing doctors who have listened and explained the disease and how they can help. I have had countless tests that show nothing and yet every laparoscopy has shown either severe adhesions or residual endometriosis or issues that need to be corrected.

The best advice I can give is trust yourself! You know your body better than anyone and if you aren’t getting a doctor to listen, find another one! Be your own advocate and educate yourself on this condition. There has been tremendous progress made in the last 10-15 years. I am sure they don’t give Premarin right after hysterectomy anymore and I would hope they are removing the endometriosis during the surgery and not leaving it to grow as they did with me.

There are a whole list of issues with not being able to take hormones. I have tried many substitutes including soy and phytoestrogens and some combinations work better than others. There are some very good holistic treatments and everyone has a different experience.

I hope this has provided some insight. I am not a medical person, I am actually a finance executive and through research and articles from great sources I have learned a lot about endometriosis. There needs to be more awareness and discussion on this, as there are way too many women suffering. Good luck and God Bless!!!

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