We’ve Only Gone & Done It!!! Documentary on BII & BIA- ALCL…

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(Perdy, Emma, Annette (behind me), Me, Sandy, Ana, Laura & Sarah)

 

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.

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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….

FACEBOOK SUPPORT GROUP for BII : https://www.facebook.com/groups/513252575548197

Understanding the signs and symptoms of Breast Implant Associated – Anaplastic Large Cell Lymphoma (BIA-ALCL ) 

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)

 

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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)  

 

Treatment

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

Prognosis

If caught early, removal of implant and capsule is normally enough to cure the disease(1)

 

UK Research

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 … 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-find-more-about-causes-breast-implant-associated-anaplastic-large-cell-lymphoma-bia-alcl#undefined

This study is looking at tissue samples, breast implants and blood samples from women with breast implant associated anaplastic large cell lymphoma. It is run by the lovely Dr Suzanne Turner.

Dr Suzanne Turners research papers:

https://www.researchgate.net/publication/332625122_Is_breast_implant-associated_anaplastic_large_cell_lymphoma_a_hazard_of_breast_implant_surgery

https://www.researchgate.net/publication/330767007_The_Cellular_Origins_of_Breast_Implant-Associated_Anaplastic_Large_Cell_Lymphoma_BIA-ALCL_Implications_for_Immunogenesis

 

Legal Action

Leigh Day is investigating potential legal claims for those who have textured Allergan implants and are concerned about BIA-ALCL. https://www.leighday.co.uk/Allergan-claim

 

Support Groups & Websites

Group :  BIA- ALCL https://www.facebook.com/groups/ALCLinwomenwithbreastimplants/

Website: https://biaalcl.com/fbclid=IwAR3Ur2xwyEIYDGF6qq5pd1wQDaObnaBhYL7GlOM0ZnOoX0nW2DIJdbUVPTM

Reference List

  1. Turton.P, Johnson.L, (n.d) BIA-ALCL [online] https://associationofbreastsurgery.org.uk/clinical/bia-alcl/ [accessed 17 June 2019}
  2. Kricheldorff, J. Fallenberg, E.M. et all. (2018) Breast Implant- Associated Lymphoma [Online] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6218708/ [accessed 17 June 2019]
  3. Image – https://www.fda.gov/medical-devices/breast-implants/questions-and-answers-about-breast-implant-associated-anaplastic-large-cell-lymphoma-bia-alcl
  4. 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

Layla

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!

Debbie

From the age of 17/18 I wanted breast implants. At the age of 26 I took a bank loan out & had the op in the January 2005.

Roughly in 2009 I started with severe headaches, I was told they were “cluster” headaches as I could get up with it, go to work, go home & go to bed, then do it all over again the next day, with the same headache. The worst one I had, lasted for 2 full weeks. I had numerous tests/scans (everything came back negative) I was put on some heavy medication to control them, anti epilepsy drugs at night & a beta blocker in the morning.

As they got worse I was also diagnosed with insomnia & depression in 2010 (a lot was going on in my family life at the time, so put it down to that) in 2011 my hair started to fall out a lot, I’d noticed but was a bit dismissive about it. Then when my hairdresser of nearly 10 years noticed it I broke down, but she told me not to worry as it’ll make it worse & to take some supplements ASAP.

Then later in 2011 I was informed I had the dreaded PIP implants, my same surgeon recalled me. He scanned me, mine hadn’t ruptured, so was put on the waiting list which was until December 2012. The surgeon replaced them with Nagor, to which I remember him telling me they were British made & textured as that would help the skin knit to them & less likely to “flip” like my previous PIPs had. In 2013 my hubby & I decided to get pregnant, so I had to come off all medication.

I gave birth in the October 2013 (he was premature) and as I tried to breastfeed, I struggled. I tried for 3 months, but had hardly any milk. I found throughout my pregnancy that I couldn’t breathe if I laid on my right side, like my nose was blocked, but that stayed after giving birth, I also lost my sense of smell.

In 2014 my headaches were horrendous again & my depression was terrible. But looking after a baby I didn’t want to go back on such strong meds. I started my supplements again as my hair was thinning again, my fatigue, headaches, were awful but again, I put it down to having a baby.

All my issues continued & in 2016 my hubby & I went to America for a while, I then got a really bad pain going from my neck, chest, to under my armpit, right down to my fingertips. I could hardly lift my arm up & if I did, it shook like a nerve was damaged. I went to numerous doctors over there, they did physio but nothing helped! We came back from the USA but in 2018 all my conditions were still there. Then I started to get really bad memory fog, forgetting words, mixing words up, putting numbers in the wrong way and general memory loss. Then came the body aches, night-sweats, mood swings are terrible, I honestly thought I was going through the change. Had all tests done at my GP, all came back negative. Changed my contraceptive, still just as bad! I’m also a nightmare for wanting to go out whether it be with friends or hubby but then I’ll either cancel on the day or once I’m out, I want to go home! I just can’t enjoy my life.

I then started to look into what it could be & after a lot of research, I found a group of ladies who all said they had the same & more symptoms like mine. The more women that were explanting, were seeing a huge difference in their health after they’d taken these toxic bags out. I then looked at the relation of BIA-ALCL to implants & was shocked to see how dangerous these are!

I don’t need to help my body get any kind of cancer, it’s rife in my family & I don’t want to put myself at any more risk than it’s already at. At the end of the day, they’re a foreign body & the body tries its hardest to push them out & reject them which makes so much sense. I’m 41 now & I have a 5yr old son. My main concern is seeing him grow up. My hubby has never been a boob man, he’s a legs & bum man. It was my choice to put what I thought were “fun bags” in, it’s now my choice to remove the “toxic bags” and rebuild my life.

After numerous consultations & being made to feel like I’m a freak, I found Beryl at Transpire. Beryl, Mr Irshad & Mr Aslam made me feel very comfortable talking about BII & I made the decision to go with them.

I explanted on 17th May 2019. I was groggy/woozy for literally a full week after, but that was due to the antibiotics. Pain wise it was sore more on my left, but that was the side they had to “dig” apparently.

Second week, the first thing I noticed was, I hadn’t had one headache. Then I realised I’d been sleeping throughout the night, every night for a good 7-8 hours. The memory fog is still here but I seem to remember quicker, so doesn’t seem as bad. My nails grew ridiculously long, I’d filed them down twice in a week & still looked like talons.

So now I’m 5 weeks post op. Was back at work after week 3, I feel brighter, happier, less stressed & more confident. It was my birthday last week, my hubby said he’d not seen me laugh & have fun like that in years. Said he felt like he’d got the “old Deb back” my mum said my face looks perkier & brighter.

I believe the heal is real. Here’s to more symptoms fading & me getting my life back on track.

Mrs B

Rebecca

 

 

8 weeks ago today I had my 14 year old breast implants removed, not for any other reason than to support my best friend who we believed was suffering from BII (Breast Implant Illness) She had been so sick for 3 years in and out of the doctors and not knowing what the hell was wrong with her, her symptoms mimicked, Fybromialgia, lupus, MS the list went on and on, but all tests kept coming back clear despite being so unwell.

A mutual friend of ours had mentioned something about BII and after hours and hours of endless research from thousands of other women on Facebook forums especially (UK Breast Implant illness & healing support group) we knew that my friend ticked all the boxes that her symptoms was being caused by her 14 yr old implants.

I decided to have mine removed with her, purely to support her on her journey, I wouldn’t have even considered having mine changed or removed otherwise, over the past several years my health hasn’t been great either, I suffered from a lot of joint pains in my back, hip, shoulder, ankles, hair loss, asthma, chronic fatigue, and last year I was diagnosed with colitis an inflammatory bowel condition, I never once thought that my symptoms could have been connected to my implants…

BUT from the moment I woke up from having my implants removed I have been symptom free!!!!!

I have so much energy it’s unreal, no pain, no hair loss no nothing!!! I feel like i have my life back and i didn’t even realise that I had lost it!! I was horrified to see that my right implant was completely and utterly ruptured!!! (see photo attached) The other photo is a photo of my gum line before and after Explant, where you can clearly see a reduction in inflammation that I didn’t even realise i had!! My poor body had been inflamed from head to toe all caused by my implants!!!

 

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Wendy

After a series of viral infections from September 2010, I was diagnosed with ME/CFS by my GP in Dec 2010. I was struggling to get out of bed, I had little to no energy, severely debilitating fatigue (feeling persistently zombiefied), flu-like symptoms (extensive muscle and joint pain, achey body and constantly sleeping), recurrent sore throats, raised glands in neck, headaches, poor cognitive function (struggled to concentrate for more than 10 minutes at a time, memory loss, difficulties processing information) and severely debilitating fatigue (not refreshed by sleep). I had all the symptoms of glandular fever but results came back negative in October 2010. The symptoms magnified further leaving me bedridden. I had further tests throughout November but when these were all negative I was diagnosed with post viral fatigue and then ME/CFS by my GP in Dec 2010.

I was then referred to the ME/CFS Service who confirmed the diagnosis in August 2011. I never wanted to be defined by an illness and didn’t want this to end a career that I loved and was passionate about. I was determined to be one of only 3% that returned to full health. With ME/CFS Service support and weekly holistic treatments (from the onset of symptoms) I did everything possible to improve my health. It was necessary for me work part-time and relinquish responsibilities but over the next 3 years there were improvements and I had landmark achievements.

By the summer of 2014 I was completing 7 mile walks which was absolutely amazing for someone that was completely debilitated and couldn’t get of bed. I still had to ‘pace’ but I felt that my tough journey was coming to an end.

Sadly I experienced my first relapse in June 2015. My symptoms were different to before. I had all of the ME/CFS symptoms and was incredibly weak (probably not helped by a ferritin level of 15) but my skin and bones were incredibly painful (especially ribs) with the lightest of touch. Water from a running shower was painful on my skin. The muscle and joint pain was more extensive. I was then diagnosed with fibromyalgia in September 2015.

From the end of Dec 2015/beginning of Jan 2016 symptoms worsened further with muscle spasms in my chest and back, very painful and ‘burning’ ribs, breathing difficulties and chest pain. I was then diagnosed with costochondritis and intercostal myalgia (linked to the fibromyalgia). This is not only incredibly painful (I feel as though I’m permanently winded, hurts to move and breathe) but makes me ‘out of breath’ (without any exertion). Talking is incredibly painful, often difficult and increases breathlessness. This was in addition to the already severely debilitating ME/CFS symptoms. I still haven’t recovered from this relapse. I returned to being bed bound. I went back to where I started which was tough after getting close to full health after a very lengthy 3 years. After feeling that I was living and not existing for the first time from the summer of 2014 .. I then went back to the beginning all over again which was soul destroying. I have always done everything possible to try and improve my health. The self funded holistic treatments that I was benefiting from before (acupuncture, reiki, massage, reflexology) were no longer having a beneficial impact (in reducing severity of symptoms). I then self-funded hyperbaric oxygen treatment (HBO) from April 2016. I did this for just over 1 year until June 2017.

Despite all treatment interventions the severe limitations and difficulties that I had been experiencing didn’t improve. My energy levels are extremely low and often non-existent. I struggle to walk. The simplest of tasks are either impossible or extremely time consuming, painful and exhausting for me. Frequent rest breaks are needed during an ‘activity’ and extended rest after completing ‘activity’. Any ‘activity’ depletes energy, increases exhaustion, increases muscle/joint pain, achiness and breathlessness. Mindful of that, I have to break the ‘task’ down into very small steps. With poor cognitive function, I have to focus hard and the concentration needed increases fatigue. I have to be careful not to ‘overuse’ the limited energy that I have and over-exert myself as symptoms deteriorate further and I’m completely ‘wiped out’ afterwards and bed bound for the next day or two or for much longer. I experience anxiety and struggle with ‘not knowing’. With symptoms not improving over a year later (February 2017) and breathing, chest and rib pain significantly increasing and unable to complete the spirometry tests, my GP referred me to the Respiratory Medicine department at my local hospital concerned that it could be something more sinister. I was seen in June 2017. The Consultant was fantastic and explored the onset of my ME/CFS symptoms back in 2010. I had travelled extensively before getting sick in 2010 so he referred me to the Hospital for Tropical Diseases in the hope for a possible cure. I had already been tested for Lyme disease (Elisa test) which like all other tests was negative. Every test that was completed at the Hospital for Tropical Diseases came back negative. That was a massive blow. I can remember being bed bound for 3 weeks after that (from the physical and mental exertion despite having to use patient transport to get there).

I never knew that the implants that I had could be making me sick. I have had breast pain in my right breast shortly after the breast augmentation in April 2007. It has always felt a little tighter. This probably wasn’t helped by the fact that I was involved in a car accident, resulting in a fractured sternum, a month after surgery! Having breast augmentation was a massive step for me. It had to be done by someone who was considered and found to be the very best in his field. I chose Mr Erian at the Cambridge Private Hospital. I went from 32AA to 32C. I never felt feminine with a 32AA flat chest. Mr Erian’s philosophy was to ensure that the end result looked natural. They do and always have. Mr Erian did check (just a physical examination though) for any rupture after I fractured my sternum in May 2007 but said that everything was fine. Prior to being seen by the Respiratory Medicine department in June 2017 I tried to access my records thinking that this might be useful. I had my breast augmentation in April 2007 and I was never told what implants I had. I’ve kept every piece of paperwork but apart from ‘bilateral breast augmentation’ being recorded I don’t know anything else. I wrote a letter to Mr Erian at the end of April 2017 but never received a reply. I sent an email via his website and then had a conversation with his fellow colleague’s PA (May 2017) who explained that Mr Erian had retired and records only have to be kept for 6 years (which has now passed) but she would endeavour to do all that she could to find some answers for me. I chased this as frequently as I could but was told that contact would be made once there was something to share. In December 2017 after chasing again (my attempts had been sporadic because of my symptoms) I was told that nothing was found. My GP has the same information as me – absolutely nothing! With the fibromyalgia and costochondritis diagnosis, I’ve naturally attributed the symptoms that I have in the chest and rib area with that. I’ve never thought beyond that. I have kept an extensive log of symptoms since 2010 especially focusing on ‘new’ symptoms. Burning pain became more extensive (other than just chest, ribs, breast area) and is often in back (upper), spine and left leg from September 2016. I haven’t been able to wear a bra since December 2015. It magnifies the ‘tightness’ in my chest and I feel like I cannot breathe. Even wearing a vest often feels too tight.

My family frequently notice that I am cupping/holding my right breast and asked me if I was experiencing pain there. It’s made me conscious of how frequently I do that. It feels heavy and I suppose I feel like I need to support it. I do sometimes massage the acupressure points around the breast (as I’ve been shown to during holistic treatments) to try and ease the pain. The right breast has always felt different to the left but after Mr Erian completed a physical examination to check for a rupture in 2007, I’ve just assumed that everything must be OK and not think too much about it. I haven’t bothered my GP with any specific breast pain symptoms because I’ve just naturally linked it to the intercostal myalgia, fibromyalgia and costochondritis. I have never had an ultrasound or MRI scan of the breasts.

In 2009 after having a rash on my right breast for over a year with intermittent cracks around the nipple area and different creams being prescribed that didn’t clear it, I was referred to the Breast Clinic with suspected Paget’s. When they saw me and viewed the photographs that I had taken, they were happy that I didn’t have it. Now I wonder if that was linked to the implants.

My severely debilitating symptoms continue but I am extremely fortunate to have the love and support of the most amazing family and man in my life. That gets me through the toughest of days. I feel so blessed but would naturally love to finally live and not just exist. Having discovered the closed facebook UK Breast Implant Illness and Healing Support Group and reaching out to Abbie Eastwood, I truly believe that a beautiful new phase of my life is about to unfold.

I am now on the waiting list for explant on the NHS.

Maddy

I feel compelled to share my story, however vulnerable and open to judgement it could potentially make me. But if it could make a difference to at least one person, then that would be fantastic and indeed incredibly worthwhile. So here goes…

For nine years I had been suffering with a host of ailments and debilitating medical conditions which doctors and practitioners were unable to explain. My quality of life had diminished dramatically and I was just a shell of the healthy, active, happy-go-lucky woman that I was previously.

By chance in April 2018 I watched an interview on This Morning with Hannah Spearritt. She talked about her chronic fatigue, brain fog, memory loss, forgetfulness, hair loss, joint pain (I also had SIBO, IBS, leaky gut, under-active thyroid, unexplained weight gain, insomnia, migraines, intolerance to changes in temperature) and I couldn’t help thinking that she was describing lots of my symptoms. She explained that she had Breast Implant Illness, and there struck for me a lightbulb moment as I realised instantly – it was this very condition that had condemned me to chronic sickness for so long.

Twelve years previously I got breast implants to balance out my breasts after breast feeding two children, and put simply, my body wasn’t ready for the cocktail of chemicals and metals that were about to be put inside me. I was lucky, however, in my discovery of two wonderful Facebook groups where brave women share their honest, heartfelt stories and give fantastic advice and support. I booked my explant surgery with a fabulously skilled surgeon and had the toxic time-bombs removed in June 2018.

Now that my healing journey has begun I already feel so much better and, though I still have a way to go, I feel blessed that I’ve been able to give my body the best chance of recovery.

For those of you considering implants or for those who have them, or know someone who does and has medical conditions that can’t be explained or controlled by medicines and supplements, then please research Breast Implant Illness and encourage others to love their authentic selves.

Ana

In 2001, I decided to have implants after breastfeeding my son and ending up with saggy breasts. I met a woman who had done it with no problems whatsoever and this gave me confidence to book an appointment with her surgeon. I asked many questions and after being told that there was no risk of cancer and that these implants had a lifetime guarantee, I decided to go for it. I was also told that a rupture was virtually, impossible. 

I was given over the muscle, 260cc implants (Perthese,  cohesive silicone gel) under local anaesthetics. I was always very relaxed, didn’t feel any pain and the surgeon looked after me really well. In fact, he did a fantastic cosmetic job as my boobs looked amazing and you could see no scars at all after they healed.

My problems started after I had my daughter in 2007. I felt extreme fatigue, headaches, joint pain, brain fog and many other symptoms. GPs put it down to having a baby. I felt desperate but insisted because I knew other mums with babies the same age as mine and yes, they were also tired but my tiredness was another level of tired and I knew very well that it was not normal. I insisted and was finally diagnosed with Chronic Fatigue Syndrome (CFS) by a rheumatologist 10 years ago.

For the past 10 years, I’ve been suffering with debilitating symptoms, which now included breast pain, that affected my work and family life. I had breast scans but they always showed intact implants so, this, as a cause, has always been rejected by doctors so, I just accepted that I had CFS and that’s it.

About 3 years ago, I heard about Breast Implant Illness (BII) and found the UK group on Facebook. When I realised that there were thousands of women with the same symptoms as me and read their stories, I was shocked and just knew then, that I was just like them. BII is what I had.

After this, I did more research and found science based evidence that there is a connection between CFS symptoms and BII. 

I decided to explant. 

If there was even just 10% chance of getting better, it was worth it. I couldn’t afford to do it privately because I hadn’t been able to work much so I had to try the NHS.

I printed everything off and went to my GP who referred me to the breast clinic straight away. At the breast clinic, I had an ultrasound scan and a mammogram.  Once again, they showed ‘perfect’ implants… However, the breast specialist I saw told me that she would still support my application for funding to have them removed because of the connection with CFS. I was very happy with this result and went back to my GP for her to apply for funding so I could have them removed.

Unfortunately, my application was rejected and I was stuck with a pair of toxic bags that were making me very ill. 

A couple of months later, I had breast pain so bad that I ended up in A&E. After checking my heart and other possible problems and concluding I was fine, I insisted the sharp pain was coming from the bottom of the right breast and not the chest or heart. They finally agreed to scan the area that the pain was coming from and they found that my right implant’s edge was irregular and that would likely be causing the pain. 

The events that followed were more than frustrating and ended up with me complaining about three doctors who were nothing but unprofessional and caused me a great deal of upset as a result. I ended up at the breast clinic again and told once again, that my breast implants were intact and they could not help me.

I was still suffering and I couldn’t take it anymore so, my husband and me decided to do this privately using a credit card. We found a reasonably priced surgeon near us who would do enbloc explant and I booked it.

I explanted on March 24th and would you believe that the breast pain I had been suffering from for so many years completely disappeared straight after?! Maybe it had to do with the fact that my right implant was RUPTURED and the left one was LEAKING? I was so glad to get rid of them!

Another symptom that disappeared straight away was the horrible feeling of a massive hangover I woke up with everyday. These implants were literally poisoning and killing me slowly! My back pain was gone!

Three months after explanting and I can honestly say that I’m 85% better in general and I know that this number will go up as my body slowly detoxes from all that poison that was leaked into me. I’m in debt as a result but getting my health back is absolutely priceless.

I know that I should never have had those implants but had I known that they would make me so ill, I would not have. I truly believed that they were completely safe and make my life better, not worse. I was a very young woman looking to feel more secure about the way I looked. Looking back, I now know I had nothing to worry about but I know a lot more now than what I did then. If I can save one young woman from making the same mistake I did, I’m happy.

Anon

I’ve had implants in since 2005.

My very first symptom started in 2011. I was diagnosed with fibromyalgia but refused to accept this as I was so busy with work! Since then I was diagnosed with Rheumatoid Arthritis, put on methotrexate which makes me feel very nauseous and causes pins and needles. I have the full set of BII symptoms now and feel so poorly, everyday is a struggle, I can’t wait for bed time, then lay awake until my exhausted body gives out around 3am. A nurse friend of mine told me she thought it was my implants causing me to feel this way years ago but I was in denial.

18months ago I went to the breast clinic and back to my PS. (NHS) At both appointments I was reassured there was nothing wrong with them despite them being 12-13 years old. I rapidly went downhill ill and suffered pain in my right boob.

I was referred back to the breast clinic last week and sure enough my right implant has ruptured. He said it must have been ruptured for a long time.  I saw a surgeon who said he’s going to get them out for me.  My operation is on 30th August at my local nhs hospital. I originally had them in via NHS as I suffer from an hereditary condition. The NHS have told me that absolutely under no circumstances will they replace them (as if I want that !!!)

It makes me wonder that they know and recognise BII and don’t want to be seen as being part of this scandal when it all blows up.

I am 57. I have an identical twin sister who doesn’t have implants and despite living similar lifestyles, she is 100% more healthier than me .She too was offered implants ( because of our condition ) but refused. I couldn’t understand why at the time! oh how hindsight is a wonderful thing !!!!