Lyndsey’s Endometriosis Battle

In August 2017 I had an anaphalactic reaction to routine endometriosis treatment resulting in hospitalisation for heart problems, liver failure and left me with chronic vomiting and suspected PTSD.  I was unable to tolerate foods for four months and it took nearly nine to eat a small toddler meal through the day.  I went from 11 stone and going in the Armed Forces, to six stone unable to stand.  My Consultant didnt know what to do as it was such a 1 in a million million reaction to develop a hormone allergy as a result of routine treatment.  There is minimal medication available for this as it is more complex than requiring an epi pen as the exposure to allergens is constant.  I was then placed on the chemo drug Prostap to accelerate the reaction out my system by switching off my hormones.  As a result, I had to leave my job in the Police 999 Control Room due to ill health as my nausea was so severe I was cycling 16 miles a day to work, six days a week as I couldnt drive for vomiting, on no food as the anxiety was so severe from the reaction that I could not eat at work.  I dropped again from nine stone back to six.  I also lost my home and had to sell everything I had worked hard for and had built up over the last five to six years which was completely demoralizing, and moved into shared accommodation in Shropshire miles away from anyone I knew because it was all i could afford on UC.  Having left work, I started to bounce back but then in May 2019 I had a second allergic reaction to my treatment which started as a severe migraine and resulted less than a week later in severe vertigo, migraine, severe balance disturbance leaving me wheelchair bound and severe nausea.  My weight plummeted again to six stone and my food intake returned to nil.  It is unclear whether the reaction was a result of five years chemotherapy treatment or due to an error in administering it as the solution was not fully mixed on administration and as a slow release injection, would have released toxic and uneven amounts of chemo into my system.  I have since been assessed by a variety of Consultants who all conclude that this reaction is due to drug toxicity, and is therefore a second severe reaction.  Since coming off the chemo, my body is no longer being treated for Endometriosis, my underlying condition which is chronic and debilitating.  As you withdraw from long term use your body goes through the menopause backwards, puberty and pregnancy all at once.  The periods are horrific; they are heavy (one maxi pad every 30 minutes), painful with a dragging twisting sensation, leave me unable to walk, irritate my sciatic nerve, cause further nausea due to the severity of the pain and no pain killer or pain killer cocktail will touch the pain.  In addition, my periods and hormones have returning has made the initial allergy significantly worse causing further food intolerances and intolerance to water.  Every cycle, I have a block of 5-10 days of severe nausea in which i sit in the bathroom, making minimal movement trying not to be sick.  In this period, at least half of it is spent nil by mouth as i cannot tolerate anything in my mouth.  This is either followed or preceded by a swollen throat leading to difficulty swallowing, liver pain, extreme fatigue (on top of the fatigue i already suffer), headaches and vertigo. I can tell that it is coming as I start with increased nausea the week before so I end up with three weeks of severe nausea.   The situation has now become so predictable, and so routine, it is clear that hormones are at fault and that it is a hormone allergy.  For someone who suffers with nausea and vomiting daily (and has the teeth/hair damage to prove it), chronic fatigue and exhaustion, this is alot for my body to fight. I am waiting for the day my body decides to shut itself down fighting this allergy as there is only so much it can take.  For me, the nearest hospital with capability is over 75 minutes away OFF PEAK - so if I have another reaction, I probably wont make it.  I'm 32 and a fitness fanatic...and I have to live every day knowing that if my body stops fighting or loses the battle, thats it.  It is a horrible cross to carry and it is one that plays on my mental health so much.  Sadly I have deteriorated to the point now that I am too unwell to access medical treatment which would improve my life such as vestibule rehabilitation and  counselling/PTSD assessment, which would make my life easier to handle rather than battling alone with my physical and mental health unable to access medical treatment.  Anyone who has had counselling or suffers with their mental health knows the value of treatment and support in their battle to get better so to be denied it whilst deteriorating is actually causing me further harm and almost certainly guaranteeing me a diagnosis of PTSD.  All this, because I am being denied treatment.

I currently weigh under 9 stone which for 5”7 is extremely light.  I cannot eat much, walk or stand, go outside unsupervised or even sleep for more than a few hours due to the severity of the symptoms.   I have no independence and spend my days staring at the walls or googling ways to help myself in desperation to get better.  As a linguist I have reached out to Consultants and Researchers abroad, used social media to find people who are in the same position and also find an outlook so I know whether I will always be this or not.  Sadly the main method of treatment is the one which has left me with severe neurological damage and in a wheelchair.  The only option left for me is to surgically remove my hormones by placing me into menopause via hysterectomy, and then follow this up with therapy - either desensitization or anti rejection medication.  The journey is long and I am 2.5 years into it, I just want to get back a degree of normality and do things most take for granted such as being able to go outside to see the Sun and the Moon, breathe in fresh air and also be well enough for visitors and to see friends as I have spent most of this time on my own, battling and trying to stay strong. It has been like a prison sentence and i have learnt what it is like to truly be alone.

Sadly, to access this treatment on the NHS I am having to wait three to four months for an appointment with my Gynae (take even longer if I was a GP referal), a minimum of four months to see if the Consultant will give me a treatment plan for my allergy - doesnt even guarantee surgery, and if it is decided i need surgery the wait is at least 12 months.  Thats correct, 12 MONTHS for a LIFE THREATENING condition.  If I wasnt a complex case and was just having surgery for routine, non urgent, personal not health reasons I could have the same surgery in less than 8 weeks... the injustice is unreal.  So the NHS are leaving me to rot away, in a shared flat, spending most of my day heaving and wretching into a bucket unable to communicate and do basic tasks for EIGHTEEN MONTHS and think that this is perfectly acceptable.  If I had a life limiting condition then I would accept the wait knowing that there would be an end to it but mine could be fatal and happen at any time.  The first allergy caused two near heart attacks, organ failure and the second caused significant possibly irreversible neurological damage...am I going to make it through a third?   I had age and fitness on my side but now I am so weak I have neither.  And to top it off, they are refusing to treat me in the meantime for my Endo or the allergy because of the reactions I am having yet are happy to leave me unmedicated, with the reaction happening and getting progressively worse as my hormones return.  Total contradiction.  I am either a life threatening and serious urgent case that needs to be treated within the guidelines of a life threatening situation OR there is nothing wrong and I am fine to wait, and be successfully treated in the meantime.  It cant be both or to pick and chose when it suits which one I am just because I dont fit into one of their boxes and I am a complex case.    As a result I have lodged a formal complaint through PALS, taken my story to the National Media and also got my local MP involved.  But this wont change anything as it takes over two months for them to deal with my complaint, probably three until they come back to me.  This is time I dont have as the allergy and my body could give up at any minute.  Therefore I have started this GoFundMe to help raise funds for the life saving surgery and life changing surgery to turn my life around.  If I can raise enough money, I can have the surgery in less than two weeks in the UK by an Endo Specialist who will be able to excise at the same time as the surgery to ensure maximum effectiveness and help with my endometriosis.  Although a hysterectomy does not cure Endo, it will reduce my hormones to stop the allergy from occurring which is my main aim.  I am also asking for excision (removal of endo) at the same time which will help my condition whilst I am given therapy for my allergy and remain untreated so my symptoms will become more manageable.   I have also explored international Consultants too who are able to do the surgery at their clinics in Poland and Germany but I am too weak to fly so ideally i would much rather have the treatment in the UK.   I am waiting for the results of my complaint in January 2020 but all money raised will go towards Consultations and treatment either in the UK or abroad so that I can get my life back and any left over funds will not be kept for personal gain and will be donated to Endometriosis UK to support their research.

Please follow my insta account @lyndseysendobattle and twitter @lyndseysendoba1 which charts my story and is updated as regularly as I can.  Please also promote my battle on Jason Manfords Community Ninjas facebook page to help secure the funding i need for URGENT treatment

Thank you for reading and thankyou in advance for any support you can give

Lyndsey