I shouldn’t have to trust my gut when it comes to making important medical decisions. I have doctors, science, diagnostic tests, experts and specialists for that – why am I being told to trust my gut? I can’t trust my gut because it’s wrong all the time, but it’s right a lot of the time too. Is it my gut telling me this is what I have to do? Or am I just desperate for an answer?
For almost a year I’ve been dealing with chronic pain and feeling unwell. It got worse in January 2020 and I’ve been on painkillers pretty much everyday ever since. My bones ache, my muscles feel weak, my skin feels sensitive to hot, cold and touch, I’m fatigued and I compare the feeling to having the flu or an infection. In fact, it feels like the post op infections that I fought off for the better part of 2020 have never fully left my body, it feels like I’m still fighting an infection.
Of course, I’ve been tested for all of this and there has been no stable sign that anything is happening in my body. Blood work comes back fine, X-rays show nothing interesting, ultrasounds are clear, bone scans and MRI’s are cancer free and my symptoms don’t line up with anything specific. This means no specialists have been able to diagnose me with anything – so there is no treatment or course of action. No answers. No end in sight.
In the process of ruling everything out, I’ve had my eye on the growing evidence that Breast Implant Illness (BII) is a real thing. It’s something that tens of thousands of women have had experience with, and are advocating for the medical community to recognize it, treat it and explain it as a risk for any women who are considering implants. It’s a controversial subject even though more and more doctors are operating on women and finding irrefutable evidence that some women have adverse and in some cases very serious complications and reactions after implant or reconstructive surgery. The physical evidence being documented by these doctors are shared in pictures and video online and in the media and it’s becoming increasingly hard to ignore.
There have been about 60 peer reviewed studies (that I’ve come across) on how breast implants have created adverse health complications and reactions, but there is still a long way to go. The information you find on the internet is a little all over the place, but a number I see over and over again by many reputable websites and organizations is that about 20% of women experience this illness and have to resort to having them removed permanently.
I can’t find any numbers that compare breast cancer reconstruction surgery to general implant surgery – and although I often see ‘women with autoimmune disease may be at higher risk’ there aren’t any solid numbers or information available on that either. It’s a lot of anecdotal evidence, women sharing their stories, and a relatively small number of medical professionals that are driving the movement to have this studied and shared further.
Are my implants making me sick? This is a question I’ve been trying to find answers to, and it’s apparent to me that I’m never going to really get them. I have autoimmune disease, so it seems like I’m at a higher risk. I’ve had multiple post op infections, so I’ve been told that my implants should have probably been removed a long time ago, which means this puts me at a higher risk. I definitely seem to run into all the uncommon annoying weird complications, so I’d say that this could totally be just my dumb luck that I’d also have to deal with something like this.
My family doctor, plastic surgeon, rheumatologist, an infectious disease specialist, a second opinion doctor after all my infection drama last year, my oncologist, my gastroenterologist, a headache and women’s health specialist and another doctor have all told me that there is no evidence that BII is a real thing. A couple doctors told me they couldn’t really speak to it, but from what they know, it isn’t a real thing… and even after pressing a second or third time in repeated visits to some of these doctors, the message is the same.
I recently had an appointment with a plastic surgeon who has a reputation for believing in BII, and operating on women who have chosen to explant (take out their implants) for almost 10 years. In fact, I just had to explain what explant was in this paragraph because my word program sees it as a spelling error – it isn’t even a real word online and in English! I found this surgeon who runs a private practice through a BII website, and read more on social media and other BII groups – that he’s the guy. He’s one of only four doctors – FOUR – in Canada who really have any kind of tie to BII at all. It’s incredible how many doctors won’t even treat or operate on women who want their implants removed at all.
Now, I’m waiting on my next step diagnostics, but as it stands he believes that my body is likely having an overactive immune reaction to the foreign objects in my body. In fact, he is quite certain that’s what is going on and he believes that I need to have them both removed, along with the capsule surrounding the implants.
A capsule is the product of what the body does to protect itself from the foreign object. The body begins to protect itself by creating a layer of tissue around the implant, eventually becoming encapsulated in it entirely. Many capsules become problems because it tightens, can sometimes move or become misshapen. Other times the capsule isn’t an issue at all, and is simply just what happens. The surgeon I saw can see evidence of a capsule on the side where I had radiation and extra surgeries, but he doesn’t see any major issues just by looking at it.
Reading all of this you may be thinking that this is a no brainer and I need to at least give it a try. But here is the catch, there is no way of knowing if this is the issue or not until the implants are removed. I have to literally have a life altering surgery – again – in order to see if this works. I can’t do tests, I can’t get a biopsy, imaging doesn’t show anything unless there is a rupture… there is no way of knowing if this will work until days and weeks after it happens.
Oh, and the really fun part is that it is not covered by OHIP. This is a roughly ten thousand dollar surgery and I am responsible for paying it. I’m not exactly sure how it makes sense, especially since I had to have this surgery because of breast cancer, and OHIP will cover a seemingly unlimited amount of corrective reconstructive surgeries – but not to have one final surgery to have them removed. Read that again – I can undergo many more surgeries that are paid for, as long as I keep the implants – but I have to pay a hefty amount of money to have them removed for good. It is a lot of money, enough money that I know women who have to take that into consideration into their decision making process. I know women who haven’t been able to have the surgery – and their symptoms are even more convincing than mine – because they can’t afford it. I don’t want to spend that kind of money on something like this, because I can certainly think of about a million more things I can do with it – but of course if it’s what I have to do, I’ll do it. My health and well being is obviously an investment worth making. Unless of course this isn’t the answer… then I’ll be out ten thousand dollars with a flat chest and that scares me.
So what if this isn’t the answer? What if I’m so distracted by the possibility of BII that I’m being blinded by it and I can’t see what else might be going on? What if I’m so desperate for an answer that even this completely uncomfortable and borderline unbearable answer is something I’m willing to consider, and move forward with? And worse, what if my doctors and I are missing something serious. Something that needs to be figured out, and something that can have serious consequences long term. After you’ve been diagnosed with an aggressive form of breast cancer, a disease that is incurable once it spreads – your ignorance to these types of bad luck situations is kind of taken from you. Every once in a while my paranoia sets in that something is REALLY wrong, and no one is even trying to help me.
Because that’s how I feel. I feel like my doctors aren’t even trying to help me anymore. They try to figure it out, and when their initial guesses don’t pan out they refer me to someone else. Once I go through it all again with the new doctor, and they can’t figure it out, the process repeats itself again and again until today. Still now. Here I go again I think, every time a doctor starts to explain to me that they just don’t know if they’re the one who can help me. Where is the effort? What would they do if it was their loved one in my shoes? Would they try a little harder, and think outside the box? I can feel it happen when a doctor gives up. And every time it happens I feel myself begin to give up too.
I have to WORK at not giving up. I have to work at picking myself up every single morning, and doing it all over again – with a smile on my face and a certain zest for life that I am determined to keep. Life is worth fighting for, and life without pain is something I’ve been fighting for pretty much since I heard ‘it’s cancer’ almost three full years ago. I get tired of it all the time, for sure. I get discouraged, sad, angry, frustrated and scared weekly, and maybe even daily. My brain is always thinking and analyzing, I’m always dissecting every little thing my body does or feels. That is something that’s become normal for me, but I know it isn’t normal, and I wish I knew what it felt like to use my brain energy for other things. If this is me keeping my life together with all of this in my head, imagine what I could be capable of if I could just let it all go.
I want to let it all go. I really do. But how do I make a decision about what to do next? It doesn’t feel right to have a surgery with no physical evidence that BII is my problem. It especially doesn’t feel right to move forward with something that eight doctors – EIGHT – have told me isn’t even a proven thing. One doctor said it was the problem, and he’s basing it on the hundreds of patients he’s seen with BII in the past few years alone – which is hundreds of surgeries that he’s performed successfully and those patients afterwards felt amazing, and would tell you that it was without a doubt the implants that were causing all their problems. That is something worth noting, I get it, and I want it to be the answer because it is at least that – AN ANSWER… but it’s still really hard to make the call when there doesn’t seem to be anything even close to a consensus on the subject.
So what do I do. Seriously, what do I do? I can’t trust my gut, it’s been hijacked by everything I’ve been through. I am at least rational enough to know that, and to know that it’s hard to make a decision without letting my emotions get involved, which is basically impossible when we’re talking about amputating my breasts – or what look like breasts – for good. I’m 36 years old, and maybe I’m not supposed to care, but I do. It’s a huge fucking deal, it’s something I’ll have to live with for the rest of my life. It isn’t just aesthetic or what I look like in clothes – it’s a part of who I am, it’s confidence, self esteem, femininity, and function. It’s being able to wear a sports bra without it riding up. And before any of my small breasted friends think ‘I’ve been flat for years!’ please stop – I know you have good intentions, but it is absolutely – most definitely – NOT the same thing. I’m sorry for yelling.
Losing my reconstructed breasts feels like I’m having a mastectomy again. In fact, it’s worse, because this time it’s permanent. The first time, I was told I’d be good as new when it was all over – better even – which is a problem that can be saved for another day… But the point is I didn’t have to worry about coming out of this feeling much different. Now, I will be feeling many different things, and as strong as I am, and rational as I can be, it’ll be one of the most emotional experiences of my life and it’s going to take work to get through it. I’ll admit it, because so many women before me have admitted it and it helps me know what I’m in for, even though you don’t know until you know.
I don’t have a plan yet. First, I need to get off pain killers to really know what I’m dealing with here – I won’t make it until I experience these symptoms without any kind of altered pain. Maybe it’s better? Maybe it’s worse… All I know is that after prolonged use of painkillers you really can’t trust your body’s pain receptors properly. Or at least that’s what google says. Second, I haven’t exhausted all of my options. I am waiting on a call from my family doctor to get referred to a new specialist. I need someone with fresh eyes, maybe someone who doesn’t know my health history and maybe someone who is willing to look at everything together and can connect some dots that all my separate specialists haven’t thought of.
I’ve done homeopathy, reiki, and other alternative treatments. I’m seeing a naturopath who comes highly recommended in the coming weeks. I’ve been in therapy, done spiritual work and even strongly considered the idea that this was all in my head. I thought maybe I’m creating this, or maybe this is a thing that happens to people after surviving a near-miss or maybe I had unknown deep emotional trauma that was creating physical symptoms. No, no and no. What I’m trying to say here is that I am really trying to objectively look at my situation and consider everything. But I’m not a doctor and I’m certainly not qualified or equipped to solve this on my own.
You only live once. And being present in the moment is really all you have. I am very good at being present in the moment because it’s something I have been practicing most of my life – first unintentionally, and then very intentionally. I am very happy every day, and I enjoy doing all the things with my kids, my family and my friends. I joke, I post on social media, I have other things to do and to focus on. I help take care of others and I do what I can to be there for anyone who is going through something hard. I work out – not the way I want, and not the way I used to, but I do what I can when I can. I teach fitness classes and personally train clients, and I enjoy being a seasoned fitness professional. I’m currently enrolled in a program to become an internationally accredited life coach so I can really dive deeper into helping those with health issues and challenges – because that seems to be something I’ve become specialized in lately, and it’s giving me new purpose in my work. It’s something I’m looking forward to so much. As I navigate through my stuff, I hope to be able to successfully help others do the exact same thing.
What does the future hold for me? I don’t know. I’ve always wanted an unconventional and uncommon life… I guess I should have clarified exactly what that meant. But the truth is that everything I’ve ever wanted for myself I have made happen. And figuring this out, moving forward, and maybe even enjoying a pain free and healthy existence is something I can make happen too. One day at a time, with gratitude and persistence – I’ll get there. And I guess all that will be left will be to figure out what to wear…
Oh wow, wonderful last line. I love you seems so small, but I do. It’s all I CAN do.
Lindsy, your story, experiences, and feelings are crushing and so very inspiring at the same time. This is your decision and yours to make and as a women so very glad we have the option to make such a decision. You have been and continue to be strong. Whatever your answer, whatever the path, it will be another decision you have made, hopefully towards a path that brings more comfort and more peace of mind. My heart is with you. Martha
Lindsy. Another mountain to climb
You have been a true warrior for the last three years. Time to soul search your thoughts of your decision. Have faith in what you choose. No one can feel your pain Except. your explanation of explanting. Breaks my heart for you. I know Lindsy those scars would not be your choice but freedom of pain and the love of Family Friends And Life would reward. Not to .she light on it. I have a friend she went pretty similar situation. She wears a beautiful tattoo that expresses her love of life. I’m always in your corner with a prayer. Choose for you. Love Aunt Cheryl???
I am angry alongside you. I wish my nursing brain could help u decipher all of the muck, but I know you’ve become an expert.
Your natural ability to articulate is so inspiring. This community, whom which I know you never dreamed in your worst nightmares of being a part of, is so lucky to have a fighter like you… and I get this role is exhausting.
Here for u. Xo
As always, I’m very Iimpressed with your strength and determination. I am sorry you are having to go through this.
As always, I’m very impressed with your strength and determination. I am sorry you are having to go through this.
Lindsy, you are such a Trooper and been through so much. No matter your decision it will be the right one for you. You are beautiful inside and out, never forget that. Love you.
Such an amazing story written by an amazing girl. I truly admire your courage and strength and know one day your gut will speak loud and clear. Sometimes adversity strikes so you can help others. This is truly your path. Love ya Linds xoxoxoxo
Linds, I wish that I had words of wisdom for you or could help you a in some way, any way, to make a decision. I wish for you the strength to continue to advocate for yourself and for you to find pain free peace and serenity, no matter what your decision may be. You are loved. I am praying for you.
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