I honestly can’t believe that three and a half years have gone by since removing my breast implants.
In 2015 I was in a world of pain and diagnosed with an autoimmune condition, Rheumatoid Arthritis. It was a blow to say the least. A disease that allows my immune system to run riot attacking itself at will.
The cure… there isn’t meant to be one.
The way to deal with it… a cocktail of medication that suppresses the immune system.
Fortunately this unfortunate episode in my life was for the greater good. It allowed me to search deeper into the reason why I was in this annoying health predicament, opened me up to go onto support others in the same situation.
Having discovered that the last 14 years of illnesses correlated to my toxic ‘fun’ bags, I was quick to remove them see how many of the symptoms I had suffered with over the years would disappear.
The fatigue, hair loss, dizzy spells, headaches/migraines, back & neck pain, anxiety, panic attacks, itching all over my entire body, gastro intestinal issues, random allergies… all gone!
Raising awareness became my top priority once I explanted. Together with the wonderful Sandy Cooper we co-founded a support group for women in the UK going through the same painstaking journey as we did. Constantly being dismissed by their GPs, consultants or surgeons because all their test results came back normal. Hearing the same words over and over again that there are no side effects/symptoms relating to breast implants because they are inert and there is no scientific evidence to justify otherwise.
Three and a half years on and our group is near the 3000th member. These women are now part of an incredible community that truly understands what they are going through and have the support they need every step of the way, to help them heal.
This year (2019) we achieved, what we thought would be, the unachievable. A documentary was aired on Channel 4, where I dusted off my old presenting skills and reported for Dispatches about the growing number of women complaining about illnesses, as well as some being diagnosed with a rare form of cancer (BIA-ALCL) relating to breast implants. Since then, there have been many fabulous media reports following suit and awareness is growing daily.
We have grabbed the attention of surgeons across the UK through their societies such as BAAPS and BAPRAS, whom are now holding lectures regarding BII and how to help women.
The MHRA (UKs regulatory body), have also taken note of the situation and we are currently waiting for them to hopefully follow suit from the FDA and release a statement about BII.
Miss Diagnosed started off as a little blog, documenting my journey of BII. It has been growing slowly over the years and is now bursting with a wealth of information from why our bodies react to implants, understanding the signs & symptoms of BIA-ALCL, BII journeys from many different women with many different brands of implants – to my journey, detox and a few recipes that I have used along the way.
I really hope you find this website helpful, supportive and comforting during your journey back to health after Breast Implant Illness.
Please be aware that this blog is protected by copyright law. It cannot be copied, distributed or exhibited in a whole or part without my permission.
This is the million dollar question. The one that all us ladies whom have been and still are going through illnesses because of their breast implants would love the answer too.
There have been some fabulous research studies on this topic, like this one by Dr Mark Clemens, that help us to try and piece the puzzle together, as to why we have become so ill.
During my years of healing (currently at 3.5 years since explant), I have tried many different diets and detox’s, had more blood tests than I can shake a stick at and tested my gut, adrenals and even my hair to help me navigate such a tricky and uncertain healing path.
When I started to study anatomy and physiology and how our body’s function on a daily basis, it was fascinating to learn just how a small amount of stress can upset the homeostasis (balance) of the internal workings of our amazing machine. I found it quite a good place to start to try and find some answers.
Are you ready? I have made this as simple as I possibly can without going into loads of depth and technical terms…
When breast implants enter the body a sequence of events occurs in the surrounding tissue and eventually ends in the formation of foreign body giant cells where the tissue/implant meet (1).
A foreign-body giant cell is a collection of fused macrophages (a type of white blood cell of the immune system, that engulfs and digests anything it feels is a danger to healthy body cells) which are generated in response to the presence of any large foreign body. This is particularly evident with implants that cause the body chronic inflammation and foreign body response (2).
When a macrophage is exposed to inflammatory stimuli and attempts to break down the foreign object, they will secrete a wide range of small cell signalling proteins called cytokines. There are many different types of these cytokines called interleukins and they are separated with a number, such as IL-1, IL-2 and TNF-a. This secretion of cytokines then signals an inflammatory and wound healing response (1/4).
According to research by A.J. Dunn, cytokines are the major chemical messengers within the immune system, and specific cytokines IL-1, IL-6 and TNF-a, activate the Hypothalamo-pituitary-adrenocortical (HPA) axis (3).
Are you still with me? Fabulous, I’ll continue…
The Hypothalamic-Pituitary-Adrenal (HPA) axis is a group of hormone secreting glands from the endocrine system. Its role is to regulate the internal environment of the human body. Once the HPA axis is activated, it sets yet another chain of events off within the body, signalling the anterior pituitary gland which in turns signals the adrenal glands. The adrenal cortex then releases cortisol (5). Cortisol affects many different functions in the body. It controls blood sugar levels, regulate metabolism, help reduce inflammation and controls blood pressure. The adrenal medulla releases two hormones called epinephrine and norepinephrine. These hormones are the ones that contribute to the fight-or-flight response of the sympathetic division of the autonomic nervous system. The results of this stimulation dilates the airways, increases the heart rate, blood pressure and blood levels of glucose and fatty acids, which allow the body to handle any potential stressors. When the cortisol levels get too high in the bloodstream, they hypothalamus kicks in again and switches off the stress response and stops releasing its original set of hormones. This is all in hope that the stressor has been dealt with, balance and calm have been resumed (6).
HOWEVER – there are some instances when this HPA cycle falters due to the ongoing stressor. When levels of cortisol secretion result in the body being unable to return back to its normal homeostatic equilibrium, it causes chronic stress and starts suppressing the immune system. This can lead to many stress related disorders and diseases when it dysfunctions (8) including; mental health issues from depression, anxiety (9); the failure of the pancreatic B-Cells causing irregularities in insulin production, which can lead to diabetes; gastrointesinal issues, including ulcerative colitis and IBS; depressed immune regulations causing more persistent viral infections and autoimmune conditions like rheumatoid arthritis and adrenal gland disorders (5).
So this is how an invader to our system, can have such an impact on the internal workings of the body. But then we need to take into account how other stressors creep into our lives too and add to Stress Mountain…
When we start to get sick and the results from the doctors are all normal and we feel like we are loosing our minds and the illnesses affect our daily lives. WE GET STRESSED. This time on a mental level. This type of stress also has detrimental effects on our internal workings.
Psychoneuroimmunology or PNI as they like to call it in the medical biz, is the study of interactions between the nervous, endocrine and immune systems and the communication pathway between them all. In a nutshell, a group of experts have also found that stressors arising from psychological or psychosocial situations activate a stress response within the HPA axis. Continual stressors, which are also known as chronic stress, suppress both cellular and humoral (blood or bodily fluids) immunity. This compromises the immune system and increases the chances of illness, infections and diseases (6).
So put all of this together from a foreign body response and our psychological stress response, that is a lot of stressors attacking our homeostatic balance. Once it starts to falter and other illnesses or infections or even worse case diseases join in… it simply adds to the heavy strain our bodies are already under, trying to regain that balance and harmony. If our bodies are going through this every day for years and years because of our implants, you can see why our little walnut shaped adrenals get burnt out by dishing out the cortisol 24/7 with no rest bite.
Now just to make you aware, ‘adrenal fatigue’ is not an accepted medical diagnosis. BUT when you look at the signs and symptoms of ‘adrenal insufficiency’ they do match many of our symptoms with BII, such as fatigue, body aches, weight loss, low blood pressure, light headedness, loss of body hair (11), difficulty getting to sleep, sugar cravings, brain fog and lack of motivation. There is a fabulous doctor who truly believes in adrenal fatigue and his name is Dr James Wilson. He has a great webpage, where you can learn loads about it and how to help nurture the little walnuts back to health again.
So is this it?
Nope, unfortunately not. This stress situation really likes to really get its claws into everything. Are you ready for the next round? Okay here goes…
Next on the hit list is our gut. Yes stress has a detrimental impact on our microbiome too. So here are some fun facts about how cortisol effects the gut:
it diverts blood away from the gut to our muscles ( to help us fight or run from said stressor, which obviously we can’t as we have had it sewn into our chests – yay!) .
it slows down the production of saliva in the mouth, which means the enzymes we need to break down food is reduced, thus impairing our digestion.
it decreases prostaglandins, which are a compound that protect our stomachs from acid. So you may find you have a more sensitive tummy.
it slows down digestion or can cause sudden diarrhoea, this means that the nutrients we need aren’t getting absorbed because they are being evacuated out at high speed.
it compromises the immune system with chronic stress and with 70% of our immune system found in our guts…need I say anymore. (12)
Stress can also make the intestinal barrier weaker, allowing gut bacteria to enter the body. Our immune system can normally take care of these little invaders (13), unless it’s not functioning as well as it should be due to the chronic stress within the body that is already affecting our immune system!!
To wrap up on the gut, prolongued stress can alter your microbiome. These alterations can cause the bad gut bacteria to monopolise and multiply, which can again impair the immune system thus causing health issues. Not like we haven’t heard this old chestnut before.
So when you now look at everything we have just learnt as a whole, we have a hell of a lot of stress coming from many angles. No wonder our bodies are exhausted trying to cope. No wonder we have symptoms and illnesses that come and go, leaving us baffled as to what is wrong with us. No wonder we feel like crap.
In my non medical opinion – once explantation has occurred the following should definitely be looked into to help you along your healing path.
You can get your adrenals tested through a nutritionist to see what their function is. If they are exhausted, start slowly rebuilding them back up to cope with normal day to day life. Diet can also help adrenals too.
There are many gut tests out there. I would recommend again using a nutritionist or naturopath to really help you understand the results and be put on the right path to get your microbiome back to being full of the good guys and not the bad ones. I used a great probiotic called Symprove (not affiliated or an ad) that worked wonders for me. You can also see my gut test here and I would really recommend Giulia Enders book aptly called The Gut, if you want to learn more about our microbiome, really easy read too.
Learn the art of not allowing external stress to affect you.
I did this through a wonderful breathing technique which not only helps to de-stress, it also is a great way to get the lymphatic system working at optimal level, help the body to detox, as well as creating a relaxed state, reducing stress and anxiety. In fact there are so many benefits to the breathworks that I have written all about it here for you to read.
Having had all these specific tests done for my gut and adrenals, I found it so beneficial for my mental health during this tricky time, purely because I had a set of results to work from. When I then re-tested a year later to gauge how my body was functioning and could see the changes in the results, it made such a difference to me knowing I was on the right healing path.
This journey back to health is not an easy one. It isn’t a fast one either. Patience is needed, as well as being kind to yourself. That means don’t beat yourself up about having implants, it is done, it is in the past and you can’t change that. So don’t be adding any more to Stress Mountain! Allow space to stop, rest, sleep and nurture yourself when you are feeling at your lowest ebb.
I hope this post has helped you understand why your body has thrown its toys out the pram, and to work out the best plan for your personal healing path.
Once you’ve explanted you may feel on top of the world but after a few weeks you may suffer the crash and feel utterly rotten again. This is all really common for us ladies. Just hang on in there.
Remember every body is different, what may take a week for one, may take months or even years for another.
You got this…
Disclaimer- I am not medically trained and nothing on this website constitutes medical advice .
(5) Longstaff, A. (2011) Bios Instant Notes in Neuroscience. 3rd ed. New York and Abingdon: Garland Science, Taylor & Francis Group, LLC : Tortora, G. J. and Derrickson, B. (2011) Principles of Anatomy & Physiology. 13th ed. New York: Wiley
(6) Tortora, G. J. and Derrickson, B. (2011) Principles of Anatomy & Physiology. 13th ed. New York: Wiley
(7) Longstaff, A. (2011) Bios Instant Notes in Neuroscience. 3rd ed. New York and Abingdon: Garland Science, Taylor & Francis Group, LLC
During my time in what I called prison aka my bedroom, I spent a lot of time on social media whiling away the hours scrolling through post after post. Mostly I hated it because everyone seemed to be having so much fun and looked healthy and happy in an upright position. However one day a post popped up sharing a recently published book by none other than Rebecca Dennis, called ‘And Breathe’. Having read a little write up about it, I ordered on Amazon prime and it arrived the next day. I read the first chapter, shed a million more tears and emailed this Ms Dennis straight away, asking if she had any appointments for a breathing session. Thankfully she did.
That was three years ago and I haven’t looked back.
Breathworks has changed my life. It has helped me in so many ways, I am not even sure where to start. But one of my main issues when I arrived at Rebecca’s door was my broken body and how it was affecting me mentally, physically and emotionally. I knew this was all down to my journey with Breast Implant Illness (BII) and through my breathwork sessions, it helped me to release all the anxiety I was carrying, the depression that was weighing me down and gently detox, which is such a huge part of the healing process for BII.
What is Breathworks?
Transformational breath® is a natural and gentle self-healing technique that activates the body’s resources to promote health and well-being from within.
Learning to breathe more efficiently, opens and expands our breathing to support the body’s natural healing abilities. 70% of the body’s toxins are released through exhalation. Deep diaphragmatic breathing allows high volumes of oxygen to be absorbed by the lungs, allowing it to cleanses and revitalise the body. This process brings us more energy, increased detoxification, strengthens our immune system and improves our metabolism & digestion.
How can Breathwork help with women healing from BII?
When it is first discovered that implants are the possible cause of many years of ill health and a wealth of symptoms, it is incredibly common for the ladies to go into panic mode. They become incredibly angry with the system and themselves, for allowing this situation to occur which has lead them to missing out on living a full and happy life.
They start their journey by going to the doctor for advice and then continue with a desperate search to find a surgeon whom has some understanding and sympathy with breast implant illness. There is a sense of urgency in getting them removed as quickly as possible, which adds to the stress load. However during this process they can find at times that they are dismissed, made to feel crazy and also incredibly alone. Then there is also the fact that there may not be any money in the kitty needed to explant. These situations can cause a lot of anxiety, on top of feeling so poorly.
After months or even years, the day of the explant has finally arrived. The general anaesethic is always daunting and there is more worry regarding the surgery and the outcome.
In this pre explant phase, a simple breathing exercise would be so beneficial to all ladies going through this. By helping to calm your sympathetic nervous system, it allows the body and mind to calm, bringing peace and clarity from within.
Rebecca Dennis has a wonderful website, The Breathing Tree, that has some incredible easy to use breathing exercises… you may find them helpful during this period of waiting to explant.
IS A MINE FIELD for most ladies. They have had their explant and now they are moving forward into the healing phase.
The first few days/weeks are mostly amazing for many of the ladies. They find that they feel alive again, the brain fog has lifted, their hair has stopped falling out ( just to clarify that all women are different and go through different symptoms and healing patterns). Between weeks 3-8 it can all take a nose dive. Suddenly their bodies are showing the same symptoms. Panic ensues as their ‘freedom from the symptoms’ comes to an abrupt end and new lease of life seems mere flash in the pan.
This is when the real healing starts to take place.
This is where I found the breath and why it has been so beneficial in my healing process.
So in combination of changing my diet and my lifestyle, Transformational Breath® helped me to calm my sympathetic nervous system down, reduce the stress load and detox.
Detoxing is one of the main and most important parts during the healing stage.
None of us have any idea what the hell is going on inside our bodies thanks to the implants. It is believed that there are toxins within the make up of these implants that cause disruption to our endocrine system, messing with our hormonal balance and adrenals and putting our bodies homeostatic balance out of whack. With our bodies building a defence wall around the foreign invader, this causes a continual inflammatory response, thus keeping our bodies in a state of attack. All of this has a detrimental impact on the health of that body and once one system is out of balance it has a knock on effect for the rest, which can cause a multitude of health problems, mineral and vitamin imbalances – which in turn then has a knock on effect on our gut microbiome health, leading to possible depression, anxiety and panic attacks.
So to detox our bodies and help it regain balance through out, getting our sluggish lymphatic system working is the key. Lots of us decide as part of our healing to have a lymphatic drainage to help navigate the toxins being released from our systems. This is normally achieved by seeing a lymphatic drainage massage therapist.
The other key to getting the lymphatic system working at optimal level is to exercise. However when you are feeling ill, the last thing you want to do is exercise and if you were stuck, like me, in bed, it simply leads to a stagnant lymph system and build up of toxins – compromising your cardiovascular system as well as your immune system.
However a simple breathing session can achieve all that by getting that sluggish lymph system working again. Learning to breathe more efficiently, opens and expands our breathing to support the body’s natural healing abilities. 70% of the body’s toxins are released through exhalation. Deep diaphragmatic breathing allows high volumes of oxygen to be absorbed by the lungs, allowing it to cleanses and revitalise the body. This process brings us more energy, increased detoxification, strengthens our immune system and improves our metabolism & digestion.
During the stress of BII, breathing patterns change with emotions running high, the pains running rife around the body and also having heavy weight of implants on the chest.
When we are in pain it makes us tense up, breath more rapidly and this signals to the body that there is a problem and it goes into fight or flight situation. The body already struggling under its constant immune response to remove the foreign intruder of the implants, now has an added stressor of irregular breathing. The sympathetic nervous system releases adrenaline as it is in this state of fight or flight, elevating the heart rate (causing anxiety) which on a constant loop, leads to chronic illnesses – such as autoimmune issues. Retraining the breath and opening up the diaphragm, relaxing the body, signals that all is well, which in turn activates the parasympathetic nervous system to relax and allows the body to regain homeostatic balance.
Transformational Breath® has completely changed my life, by unblocking restricted breathing patterns and allowed me to successfully regain my health and live my life to the fullest again. Experiencing this profound healing technique inspired me to become a facilitator so that I could share this incredibly powerful and beautiful healing tool with others.
If you are interested in learning more about this powerful healing tool and all its benefits, you can find more information on my website A Little Breathing Space.
What is the difference between enbloc and capsulectomy?
What will happen if the capsules are left in?
Why won’t my surgeon commit to removing 100% of the capsules?
Lets answers these questions, so that you are fully informed, can make the right decision for your situation and also walk into your surgeons office with a really clear understanding to get the best out of your consultation.
WHAT IS A CAPSULE?
A capsule is the scar tissue that forms around the implant within the body. It is the body’s natural defence mechanism to protect itself from the introduction of a foreign object. It can be referred to as scar tissue, scar capsule or just capsule.
WHAT IS THE DIFFERENCE BETWEEN ENBLOC & CAPSULECTOMY?
Enbloc is actually a french term used to describe a surgical excision of a cancer. This is why some surgeons may not fully understand what you are requesting. Enbloc terminology for the removal of implants has come across the pond from the USA group and the reason it is now widely used within the UK explant community.
There are two types of capsulectomy…
Partial Capsulectomy: This is where some of the scar tissue could only be removed.
Total Capsulectomy: This is where the all the capsule is fully removed in either sections/pieces or completely as a whole unit, with the implant still contained inside.
So for clarity on terminology here in the UK;
TOTAL CAPSULECTOMY is actually the correct term to use when speaking with a surgeon if you want all the capsule removed. It is a type of enbloc capsulectomy.
The procedure of a full total capsulectomy (as a whole unit) was originally performed when the surgeon knew that the implants were ruptured. This is to prevent any silicone leaching into the cavity (the area where the implant was placed).
However many women now seeking explantation, request this specific technique as they are concerned their health issues are down to a possible biofilm (a mucusy film containing bacteria and microorganisms) that can develop in between the implant and capsule, silicone leaking from the implants or even in the case of saline implants, mould that has formed within the implant. They want to make sure that if there is anything nasty lurking, that it is contained within the capsule during the operation and doesn’t get the chance to seep into their bodies. This gives them peace of mind that they have the best chance of regaining their health and eradicating any illnesses and symptoms they are suffering with.
WHY A SURGEON MAY REFUSE OR NOT COMMIT TO REMOVING THE SCAR TISSUE/CAPSULE
This topic has recently been debated by surgeons at the BAAPS meeting last month (October 2019). During the lecture on Breast Implant Illness (BII), theatre surgeons questioned why a capsulectomy was justifiable due to there currently being no scientific evidence for a patient to undergo this procedure, unless they have proven Breast Implant Associated – Anaplastic Large Cell Lymphoma (BIA-ALCL).
The surgeons concerns are that there are possible risks involved, such as atelectasis (partially collapsed) or pneumothorax (fully collapsed), where the lung collapses after being accidentally punctured during the removal of the scar tissue due to it being stuck to the ribs. This particular risk is more likely to happen to patients that have their implants under the muscle than over the muscle. Obviously these complications can be dealt with. However if a surgeon happened to be taken to court, they would have to clarify why they felt the need to perform a capsulectomy when there currently isn’t any scientific evidence stating that it is medically essential for the general removal of implants. It basically leaves them wide open to litigation.
THIS is why some surgeons may tell you they are not willing to commit to removing the scar tissue.
In my opinion a GREAT SURGEON is a one that is completely honest with you about what they are able to achieve, by informing you that even though they will do their best to remove the capsule they cannot make any decisions on this until they have actually started the operation and can see exactly where the scar tissue has attached itself and if it is safe to remove it.
SHOULD I REMOVE OR LEAVE THE SCAR CAPSULE IN?
This is a very personal choice, but one where understanding the pros and cons are essential.
As we are all aware there has been a lot of press surrounding highly textured silicone breast implants and their connection to a rare form of non-hodgkins lymphoma. So removal of the capsule lowers the risk of BIA-ALCL occurring post explant.
If you are concerned about the risks of BIA- ALCL and want peace of mind to be able to move on after explant, there are tests that can be done on the scar tissue after explant. Simply ask your surgeon if they can send your capsule off to histopathology to be tested for CD-30 to put your mind at rest. This must be requested and discussed with your surgeon prior to the explant.
If you want to know more or are worried you are having any symptoms of BIA- ALCL please click on this link for more information.
Also many explanted ladies (including myself) have found that their histopathology results report silicone debris within the capsule causing chronic inflammation. This shows that removing the capsules at the same time as the implants helps reduce the immune response and inflammation, thus allowing the body to heal. Otherwise this inflammation continues post surgery as the issue is still embedded within the capsule.
More evidence is definitely needed in this area. As noted above, some surgeons agree with this recommendation and feel happy to offer the possibility of removal, whereas others feel more research is needed and until this can be achieved are being more cautious and will not perform it at all.
If this is a procedure you definitely want then my advice would be to email their secretary prior to booking a consultation, to find out which side of the fence they are on. That way you won’t feel like the consultation is a waste of time and money.
Anecdotally, we have found that women whom have left their capsules in ended up paying for a second surgery to remove them at a later date, due to the fact they were still struggling with symptoms and illnesses. Most found that once the capsules were removed their health started to improve.
Plastic surgeon Mr David Floyd contacted me a little while ago as he had been asked by BAAPS to present a lecture on BII and wanted advice, clarification etc on some areas. As you can imagine, I was over the moon and more than happy to be of some help.
It was really lovely to speak with a surgeon who understands what Breast Implant Illness (BII) is all about. Whom has compassion for women wanting to explant because they have a set of symptoms and illnesses they are realising are connected to their implants. A surgeon that is willing to discuss a very grey area with his peers due to the fact he has seen how the number of women arriving at his clinic with BII is rising.
The lecture was well received by all the members. They agreed that even though there is no scientific evidence regarding BII, there are a lot of patients walking through their doors and once explanted, are much better.
They discussed and agreed that we need to be looked after properly with respect and understanding.
The President of BAPRAS has also requested that a patient advocate help them to work things out. Mr Floyd asked if I would be happy to do this, and of course I have said yes. I am still waiting to hear from Mr Henley.
The Association of Breast Surgeons has also asked for Mr Floyd to speak at a meeting in June on BII.
This is just incredible progress that we have surgeons, whom are well respected in their field, now discussing BII and being heard.
I will update you all as soon as I know/ hear any more.
Raising awareness for Breast Implant Associated- Anaplastic large Cell Lymphoma (BIA-ALCL) is key to helping women across the world understand the risks and symptoms relating to a rare form of cancer that can start around breast implants.
The MHRA contact myself and several charities recently to highlight the work they are doing in partnership with the Plastic, Reconstructive and Aesthetic Surgery Expert Advisory Group (PRASEAG).
I feel this is a positive step in gaining awareness within the medical sector and for women seeking advice on BIA-ALCL within the UK.
A group of experts will be meeting in November (2019) to discuss how we can improve the care and monitoring for women with implants and health problems within the UK. I will update on the progression of this as soon as I can.
For more information on BIA-ALCL and understanding the signs, symptoms, please click here.
This all started three years ago, when I approached a production company in London, (thanks to my cousin who put me in contact), about making a documentary on how silicone wasn’t inert and the illnesses that seem to have arisen for women with breast implants. They were keen. We got ITV interested and we even made a ‘taster tape’ (little video about the issue etc to show the TV execs). This rolled on for a few months, with us all getting excited that we were in the mix to get a commission. We didn’t. They dropped the idea and that was the end of that.
Scroll on to 2018, about two years later. I find a message in my facebook inbox from a journalist Esther Oxford. She wanted to speak to me about breast implants and the illnesses that women seem to suffer with. After vetting her and making sure she was who she said she was… I agreed to have a chat on the phone.
Esther was working for Panorama at the time on a medical device expose. I was more than happy to help.
A month into helping correlate the information she needed, I received a suprising email. It was from the original production company. They had got Dipatches on Channel 4 interested in commisioning a half an hour documetary on how breast implants were making women sick.
I mean… talk about all the buses at once!!!
I didn’t take the decision lightly but as we were already so advanced with Panorma AND I truly loved how Esther seemed just as passionate about raising awareness as we all were, I let the other production company down and continued to move forward with Panorma.
After nearly 6 months of working with the team, filming at my home and with my children, it was only a week away till it would finally be aired on the telly. I knew now I was sharing air time with other medical devices, but if it got the awareness out there, it was a step in the right direction. Then I got a call from Esther saying she needed to have an ‘awkward’ conversation with me. They had dropped my segment. I was utterly gutted and felt like I had let down all the women in my group, as well as the women still in the dark. I also gelt guilty about not making the right decison all those months back and dropping Dispatches.
Esther promised me it wasn’t over and that she wanted to try and make a documentary with another production company. She went to Blakeway and approached Executive Producer Karen Edwards. Karen was keen on the idea and together they went to Dispatches at Channel 4. After weeks of anticipation we finally got the commission and they asked me to report it. I was over the moon and really honoured to be asked.
My Dispatches journey was truly humbling, I met some of the most incredible women who were willing to go on camera and share their journeys, Julie Harris, Kathryn Hewitson, Debbie Biddulph, Annette Stevens, Ana Remigio, Sarah Beech, Laura Pritchard, Perdy Barrett and Suzanne Turner. It was also incredibly exciting to finally meet Sandy Cooper and Emma Cooper (no they are not related). These ladies are everything and without them (andthe incredible Lianne Trodden, Beeylinda Agdaji Ruaux, Danielle Grimes and Annette Stevens) and their dedication to helping women with BII, there simply wouldn’t be a support group on Facebook.
Emma, little ol’ me, Sandy
Something I need to clarify too…
SANDY COOPER SET THE SUPPORT GROUP UP WITH ME!!!
I DIDN’T SET IT UP ON MY OWN…
Unfortuntately this wasn’t portrayed in the programme correctly and I was quite upset about it. Sandy, however, was her usual fabulous self telling me ‘it’s fine honey, honestly’. But everyone should know what an amazing human she is. Without her the group wouldn’t have started, because I wasn’t going it alone. Sandy is the research hound of the group and when the ‘shit’ hit the fan during a stressful week with Dispatches and research was key to keep it on track. Sandy was there, up until the wee hours sending over link after link after link. Eternally grateful xxx
I was so overwhelmed by the documentary finally airing. It honestly didn’t seem real. Getting the response during my interview with the Head of Devices, John Wilkinson at the MHRA saying that they should ‘re-open the book’, was simply incredible ( I did have to hold back the tears during the interview because I wasn’t expected that response). Lets hope this actually manifests.
Unfortunately we found out just as Dispatches was about to air, that our group couldn’t be found in the Facebook Search. This was devastating news for us all, as we had all worked so hard, especially the incredible admins of the group; Lianne Trodden, Beeylinda Agdaji Ruaux, Danielle Grimes, Annette Stevens, Emma Cooper and Sandy Cooper. A week on as I type this, we are still trying to get help to resolve this and so there are women who still can’t find us. One lady did say that she thought the group was no longer available, but just happened to come across the link to it somewhere else through a friend! Thank goodness she did.
Thankfully there were ladies that could find us through other channels, Instagram and messenger. With their permission, here are just a few of the messages that we received…
Hi Abbie, I’ve just watched your Dispatches programme on Channel 4, it was brilliant and made me cry!! I cried because I have been so ill. I had silicone implants on the NHS in 1994 (medical reasons). I heard and felt them rupture in 1999, but no-one would listen to or believe me. I managed to get my new GP last year to let me have an MRI scan, and they arranged for me almost immediately to have the ruptured implants removed. However, the surgeon left in the capsule, so I am no better. In fact I am so ill, I can’t go out much at all, and am having tests for Multiple Sclerosis. I don’t think I have it, but I have every symptom going, of those mentioned for implant illness. I am currently begging the NHS to please remove the capsule or I will never get better. I have put on over 6 stone and look like a totally different person to how I once was. I have no life, just an existence, but no-one will listen to me. I want to go on ‘This Morning’, but am too shy, and have lost every shred of confidence. I hope and pray that your programme will make GP’s and the NHS believe there really is an illness connected to implants. If you need anyone to back you, I certainly will. I’d do anything to get someone to believe me. Kind regards, Val.
I’ve just watched your breast implant illness programme. I’m 31 and had my implants at 18. For so many years I’ve struggled with so many symptoms of breast implant illness and had no idea what it was. I feel drained and exhausted with constant trips to doctors of illness and anxiety. I’m now sat here feeling like I actually now might know what is causing this and praying i will feel normal again if I get these implants out. I had no idea about breast implant illness and would of never known if it wasn’t for your show . I just want to say thank you. X
Abbie I’m so utterly touched after watching tonight’s episode, even more convinced this is what I’ve been experiencing for the last ten years – that has taken over and changed my life. I’ve always known something wasn’t right and battled with my GP that it wasn’t just Fibromyalgia and that I shouldn’t have to suffer in silence, or suffer as I have been. I’m on a mission tomorrow to change and regain my life instead of suffering in pain, lethargic and just not me!! Xx
Sorry to contact you personally but I was shocked by Dispatches last night. I’m a BRCA 2 gene carrier which as meant I’ve had a Total Abdominal Hysterectomy and a Bi- lateral Mastectomy about 11 years ago. 10 years ago I had implants fitted at my local NHS hospital. I’ve always been fit and healthy I don’t drink or smoke. I ran 5 days a week and did Zumba for fun 3 days a week. Over 5 years ago I started to suffer with chronic fatigue but then worse my legs started hurting so much I could hardly walk. My GP advised to rest and I did . My legs constantly hurt me like I had done a gym session every day. I was referred to Rheumatology where after many tests they diagnosed me with Fibromyalgia. I don’t do any keep fit anymore but push myself to walk. I’ve reduced my hours at work but by break I could just sit and cry I’m totally shattered. I suffer with headaches brain fog and I walk into things regularly. I’ve always suffered with pains since having my implants in. I’ve recently been back to Breast Consultant because my implants are lumpy and causing me problems under my arms. His solution was to take fat from my tummy and pad out my implants. I’ve always said when I can have them removed I will because they have been nothing but trouble with them. I work in the NHS too and my Boss rung me last night to tell me to watch the show as she thought it matched me. Just starting to hope that I can get back to myself instead of having to live with Fibromyalgia for rest of my life if it is in fact my implants. Thank you for making the show feeling hopeful.
Hi Abbie, A very dear friend messaged me earlier to say, switch your TV on now…. I have Allergan implants (7 years in) and one has ruptured !!! It’s so scary and nobody seems to care, and more scary no one seems to care about the obvious health risks either, not to mention the fiscal impact on their customers, patients, victims lives….!!! I was so relieved to see you this evening…thank you xx
There are so many women in the UK who keep the secret that they have breast implants close to their chest (no pun intended).Breast implants aren’t just for the glamour. They are also for women with deformities of their breasts, asymmetry, no development at all and also after a mastectomy.
Breast Implant Illness is real. FACT. It causes many symptoms from chronic fatigue, excruciating headaches, joint and muscle pains, insomnia, brain fog, constant hair loss, dizzy spells, back and neck ache, itching, anxiety and depression to name but a few!!All of this leads to a debilitating life, where these women struggle daily to work, be a mother to their children, a wife to their husband, they loose friends, relationships break down because they are always complaining they feel ill and can’t socialise and just generally exist. Some, including me, have contemplated suicide because we can no longer take the pain and suffering.
We are turned away by GPs and consultants because our test results all come back within ‘normal range’ and because there is no ‘scientific evidence’… yet anecdotally it is HUGE.
Now there is the risk of developing a breast implant lymphoma, BIA-ALCL which is fortunately curable if diagnosed quickly. But with the information regarding signs and symptoms still lacking within certain parts of the medical sector, women are not getting the diagnosis quick enough, if at all.
I have been so bloody honoured to be the Reporter on Dispatches about this under acknoweldged situation. To help raise awareness for women still in the dark and silently suffering. I have met the most AMAZING ladies during filming and to each of them I am eternally grateful for your courage in sharing your journey with Breast Implant Illness and BIA-ALCL.
Here’s to getting the MHRA to recognised BII and open the door for women to recieve the recognisition, support and medical help they need.
Dispatches. 8pm. Monday 24th June. Channel 4. – Watch on catch up now….
BIA-ALCL is a rare type of non-Hodgkin lymphoma linked to highly textured breast implants. It’s not a breast cancer, but a lymphoma, a cancer of the cells of the immune system linked to breast implants.
The causation is still not fully understood, but there are incredible researchers world-wide trying to get to the bottom of it. Dr Suzanne Turner is heading up the research of BIA-ALCL in the UK at Cambridge University and during my filming with Dispatches, I was honoured to meet her in her research lab.
As of June 2019, the MHRA (UK regulator) states that the chances of developing BIA-ALCL is 1:24,000 – although speaking with Mr Wilkinson, the head of medical devices at the MHRA, he has stated that this figure may well be inaccurate and underdiagnosed. This is because there are no real statistics to show how many women in the UK actually have highly textured implants, including the banned brand Allergan.
Signs and Symptoms.
Onset of symptoms normally occurs at least one year after implantation.
The most common presenting symptom is a swollen breast. This is caused through a seroma (fluid build up) between the implant surface and the fibrous capsule. Sometimes this can occur in both breasts, but that is very rare (1).Newly occurring asymmetry of the breasts.
Pain in the breast(2)
A hard lump(2)
Inflamed/ large lymph nodes(2) in auxillia and armpit(4)
Thickening of the scar capsule(4)
Rash – on the breast, back (like shingles), can sometimes be similar to exzema(4)
Itching which feels like a deep seated itch that you can’t get to. There is no relief from scratching(4)
The symtpoms of inflammatory cancer can be the same symptoms as BIA-ALCL(4)
Image taken from FDA website (3)
Investigation & Testing
A physical examination by a surgeon or clinician will occur.
An ultrasound guided aspiration (collection of the fluid) will occur and then be sent off for specific testing, CD30 and Anaplastic Lymphoma Kinase (ALK) markers.
BIA- ALCL can only be confirmed if the CD30 is positive and the ALK is negative.
If there is a lump, this will also be biopsied.
If BIA- ALCL is confirmed, a PET-CT scan may also be performed to rule out any spread of the disease.
If lymph nodes in the armpit are abnormal, then they will also be removed and sent for testing. This would normally be performed at the time of the explant surgery(1)
Removal of the implant and the scar tissue known as a capsulectomy.(1)
If the capsules are not removed the risk hasn’t been removed. ALCL will continue to grow without implants in dwell. See below link for more information on en bloc. (4)
BIA ALCL surgery and En Bloc resection. Images of asymetric breast, surgery (graphic). Click here for paper… Enblock-BIA-ALCL
Possible follow up treatment depends on the stage of the disease.
Stage I = explantation of implant and capsule
Stage II+= requires more aggressive treatment, such as chemotherapy
If caught early, removal of implant and capsule is normally enough to cure the disease(1)
Asking for help from women that have just been given the news they were dreading feels wrong.But if it wasn’t for other incredible women that have already been in this situation who have given their time, the research already completed couldn’t have happened and we are just so grateful.
Everything you need to know about this study is on this cancer research link below …
Information supplied by Terri McGregor BIA-ALCL group
This post is dediated to the amazing awesome and wonderful Julie Harris. The bravest lady I know, who is currently kicking BIA-ALCL to the curb. If this information had been available to Julie when she was showing signs and symtoms of this lymphoma cancer, then she wouldn’t be currently going through stem cell treatment to save her life. Please help raise awareness and share this blog post. Thank you. x
In 2001 a gp recommended I have implants due to an abnormality in my breast tissue, I remember feeling overwhelmed by it all. Firstly I had to tell people what was happening which was such a big deal for me as I had hidden it for years with padded bras- I felt like I was admitting I wasn’t a proper women. During the first appointment they told me the risks involved with the surgery. These were things such as the scars, possible bleeding during surgery etc Implant rupture and “worst case” my body rejected the implants- in which case they would be removed, wait a few months then try again. I sat there and I felt worried about ruptures so I asked them- what happens if they rupture and I don’t realise? He replied “they would become rock hard, swollen, hot to touch…..oh you would know” and they all laughed it off.
So I went ahead with the operation, for 16 years I had no problems with the implants as they hadn’t changed in anyway. Due to having so many unexplained symptoms for years I had been having an array of tests and saw many different specialists and no one really being able to give me answers- I’d get throw away dismissive comments- maybe anxiety or depression……my mum came across some information about breast implants illness, she spoke to my fiancé about it. They thought it made perfect sense, and I remember being so annoyed that they weren’t listening to me! My implants are fine, not ruptured and silicone is safe- I knew this because the specialists had told me so why are they wasting time with this?! How could my symptoms be related to a safe medical device that wasn’t ruptured? It was infuriating. He read me stories from other women taking about breast implant illness- I thought how silly, these doctors and specialists know more than Sally down the road, and I KNOW they haven’t ruptured because they aren’t hard or painful.
My Symptoms included seizures,extreme pain in my joints so bad I’m unable to walk most days, hair loss, memory loss, fatigue so extreme I couldn’t even speak, rashes covering top part of my torso, back,neck, face and arms, brain fog, hand tremors, crushing rib cage that I ended up in a&e, metalic taste in my mouth, intolerances, numbness and tingling, sometimes my breathing would just stop!!! I Couldn’t swallow, my heart rate was going high then I’d pass out…the list goes on My fiancé asked for me to be referred to have my implants checked. I saw a breast doctor first who felt the implants and thought they were fine- no concern but arranged the scan for a few days later.
On 25th March I had my ultrasound, Left implant rupture contained in capsule, Right implants looks intact however the silicone in my lymph gland suggests a “bleed” The floor fell away from me!! But they aren’t hard?! They aren’t painful?! How can it bleed?! What does all this mean? How can this happen when I was told it wouldn’t, then my fiancé brought up bii i told him it still can’t be the implants making me ill- so I started researching it to prove him wrong! But the more I dug the more the safety studies didn’t add up. Then I found some lists of what implants contain……everything made sense! I had neurotoxins and heavy metals in my body and my lymph glands. You know acetone? Nail varnish remover….also in there! Oh arsenic….that’s so inhert?? Mercury? What a lovely combination to be right next to our hearts. So when I saw the surgeon I was treated like I was wasting their time but was shocked to hear her say how real breast implant illness was! So they all know but just don’t tell anyone else. “We can only offer a removal of implants” I said but the capsules are meant to be removed because the risk of bi alcl? No we will just give it a swill around with sterile water was the reply… Then I was told I would have to see a phycologist first and only if I was deemed able to cope with being left with no breasts and saggy skin after would they go ahead with the removal. Before the surgeon had even seen it read the ultrasound report I told her it was in my lymph glands because I wanted to ask questions, I was told it wouldn’t spread further so that’s not a worry as that doesn’t happen, then added how I am not a priority so couldn’t tell me how long I’d have to wait.
How can something so well tested over the years not be understood in this way if it was tested properly?
I left feeling devastated, felt so unsupported. I had so many questions but no one seemed to know anything, my life was in the hands of people who told me this would never happen! I tried to research more but no answers to what was happening to me.
So I joined the Facebook group, at first I just searched certain symptoms and would read other women’s stories. I read lots of stories of women having the implants bleed to many different lymph glands….so it does spread. I couldn’t believe it the women in this group were a wealth of knowledge, they weren’t crazy women blaming illnesses on implants for the sake of it or starting a new trend by removing implants or fabricating theory’s they were all nice supporting women who have suffered or suffering like me I’ve gone through so much pain and upset for years, since the implants but never put it all together.
The group has given me the emotional strength and support to get through this, I want to be able to walk down my own road, I want to go for days out with my children- I don’t want to be ill anymore, I’ve lost my identity, my face has aged rapidly, years of my life wasted, I’ve suffered miscarriages, I’ve lost friends.
I’m explanting in September and look forward to healing & forever telling my fiancé he was right and I was wrong!