Reaching a Full Understanding of the Pill for Endometriosis

Reaching a Full Understanding of the Pill for Endometriosis

The pill. It’s a loaded subject that divides opinion and sparks debates, yet those of us who’ve taken it have rarely fully understood how it works and its side effects. Until now.

Chances are, as an endometriosis patient, you’ve been prescribed the pill at some life stage to manage your symptoms.

I’ve been prescribed several different birth control pills. My doctor took me off the first pill because of an increased risk of stroke. I tried other contraceptive pills which all had severe adverse effects on my mental health and, occasionally, my weight. I felt so scarred by these experiences and the dark hole that I found myself in, that I refused to try an intrauterine device, or IUD, despite my doctor telling me the hormonal effects would be isolated inside my womb.

I believe it’s unlikely that the hormones would stay isolated as if my womb could imprison them. Our bodies are made of tissue that absorbs, not metal walls, and it appears I’m not the only one who questions this claim either. However, I’m not an expert; I’m just someone who has come to know her body. And I’m not willing to risk putting myself in a vulnerable position, given my history — womb of steel or not.

Many of us are taking hormonal birth control to help us to manage endometriosis — and that’s fine. I have my own way of managing my condition. I previously used the pill to help me to cope as well, but it just didn’t work out for me. But what I think we are missing here is informed consent. When our doctors prescribe the pill, how many of us know what questions to ask? How many of us understand the medication’s side effects? How many realize what the pill does to our bodies? We say “yes” to taking something, but has our doctor given us all of the information we need to allow us to make an informed decision? Sadly, the answer is “no” in many cases.

Doctors and women’s health specialists are responding to this lack of information and demanding more transparency for their patients.

In my latest podcast interview, I spoke to Lisa Hendrickson-Jack, host of the “Fertility Friday” podcast, about the problem with masking endometriosis symptoms and other period issues with the pill, without first addressing the root of the problem. It still exists, potentially undiagnosed, under the radar for years, and can often return later in more severe forms or cause damage which can go undetected while on the pill.

Lisa also talks about common side effects of the pill, such as depression and low libido, and also discusses some of the lesser-known issues, such as ovary and clitoris shrinkage.

In her new book, “The Fifth Vital Sign,” Lisa explains how we can counteract or minimize these side effects through diet and lifestyle choices. She describes the fertility awareness method as a way of understanding our cycle so that we can begin to address our conditions and learn new ways to manage and treat them without the pill.

Dr. Jolene Brighten is another specialist raising awareness of birth control side effects. She advises on how to take the pill healthily and safely. She was recently on Jessica Murnane’s podcast discussing the impact of hormonal birth control on our brain biochemistry. For example, some forms of the birth control pill deplete particular nutrients we need to make serotonin, resulting in low moods and depression.

On her website, she shares some studies revealing the associations between mood disorders and hormonal birth control.

“In a 2016 study in JAMA, it was found that in women who began the combination pill (ethinyl estradiol and progestin) there was a 23% increased likelihood they’d be later prescribed an anti-depressant for their mood symptoms.”

Studies have shown young women who use hormonal contraceptives, including the IUD, have three times the risk of suicide compared to women who have never used hormonal birth control.”

The book “Sweetening the Pill” is currently being adapted to a documentary. Meanwhile, courses on fertility tracking and programs for managing birth control without the pill are popping up everywhere.

It’s clear to me that women want more facts. And while there is plenty of information out there, our doctors don’t always give us the full picture. Each of us has the right to manage and treat endometriosis in the way that suits us, and to know the full facts of the medication we’re prescribed. Until the medical industry catches up with us, I’ll be looking toward the period pioneers who are providing us with the answers for which we’ve been searching.

***

Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Jessica is the creator of This EndoLife.com, a website dedicated to supporting women with endometriosis, women’s health conditions and the associated mental health issues that accompany them. She is also host of This EndoLife Podcast, where she interviews guests managing chronic illnesses and mental health problems in their own unique ways and are helping others to do the same. Jessica has a background in the arts and charity, having spent the past six years working with organizations supporting women with endometriosis, vulnerable young people and survivors of domestic violence and trafficking.
×
Jessica is the creator of This EndoLife.com, a website dedicated to supporting women with endometriosis, women’s health conditions and the associated mental health issues that accompany them. She is also host of This EndoLife Podcast, where she interviews guests managing chronic illnesses and mental health problems in their own unique ways and are helping others to do the same. Jessica has a background in the arts and charity, having spent the past six years working with organizations supporting women with endometriosis, vulnerable young people and survivors of domestic violence and trafficking.

2 comments

  1. Kristen says:

    I’ve been told that the pill stops endo from growing and spreading throughout the body. This is the only reason I’m on it. Otherwise I’d figure out something else for the pain being off the pill. I’m petrified of the pill. I’ve been on the same pill since I was 18. I’m 40 now and last year I had my gallbladder out which could be a side effect of taking the pill. The surgeon said it was the worst one he’s ever seen and looked like a gallbladder from a 90 year old person. I’m pretty healthy and have a pretty healthy diet. I weigh about 120 lbs and I’m about 5’7. I don’t exercise other than occasional walking. I’m active and a go getter but lately age and risk factors are really scaring me. I’ve also smoked since I was 14 and I just quite cold turkey last March 2018 because of the pill and the high risk of stroke etc. I had a laparoscopy done in 2013 and had the endo lazered and some cysts removed. Last year I had a fibroid removed that was apparently causing me to bleed randomly. I feel good, great actually just very nervous of the pill and the side effects. My gyno has recommended lupron and other hormones but the side effects sound awful too such as bone loss. Does anyone have any advise? I feel my gyno and primary care Dr’s don’t have answers for me. I told my gyno about this website and then endo study and she never heard of it. Its really disappointing to me. Do I stay on this pill or some type of hormone to control the endo from spreading until menopause? Which could be another 10 or more years for me. Any advice I would greatly appreciate. Thank you.

  2. kpaintsten says:

    I’m sorry that hormonal treatments for managing pain from endometriosis left you scarred and fearful. It seems that those experiences prevented you from utilizing hormonal treatments that may have been more effective for pain management.

    I think we all know, anecdotally, that the side effects from hormonal treatments – whether for purposes of birth control or pain management – are different for different women.

    My own experience, for instance, began in the 1980s when I saw a physician for pain management from periods and was prescribed a standard-issue high-estrogen birth control pill. At the time, this was the most commonly prescribed BCP and presumably worked well for a lot of women. Though I would not be diagnosed with endometriosis for another 30 years, I know now that the high dose of estrogen is what made my endometriosis symptoms worse. I stopped taking it, experimented with my doctor with other prescriptions, and ended up on a low-estrogen pill that worked for me.

    Flash forward to the early 90s when depo provera was approved in the US as a form of birth control. I started on it the day it was approved and was forceably taken off it when the “black box” warnings came out in the early 2000s. It was a miracle drug for me. It allowed me to live a normal life for 12 years. But for other women just 1 shot was an living nightmare that they had to endure for 3 months until it wore off.

    Flash forward a few more years and I ended up on a POP (Progesterone Only Pill) that made me suicidal. I stopped taking it. Death averted.

    So, no, we don’t know what the side effects of hormonal treatments are until we actually take them. Nor do our physicians. They’ll effect some women in some ways and some women in others.

    However, I don’t think that adopting the anti-woman, forced-birth, faux-science of the Far Right is going to do anything for us toward a better understanding of endometriosis or get us to a cure any faster. At worst, it is dangerous to the health of all women, not just endometriosis sufferers.

    As far as “masking endometriosis symptoms” with “the pill” (though presumably you mean “hormonal treatment” and not just BCP) – it’s a legitimate form of treatment. It’s symptom “management.”

    There’s no cure for endometriosis. The best we can do is manage our symptoms. If we can cease or decrease pain through ceasing or managing periods with hormones, that’s success. It can mean decreasing our chances of developing accompanying disorders, like chronic pain, chronic fatigue, pelvic floor dysfunction, dyspareunia, and the other conditions that accompany endometriosis.

    I understand that this treatment protocol was not successful for you, but actively discouraging other women from pursuing it is irresponsible, if not ill-informed.

Leave a Comment

Your email address will not be published. Required fields are marked *