Help Ellie get life changing surgery
TLDR: 3 years ago I was a life and soul of the party, all singing all dancing (yes, literally!) knitting social butterfly psychotherapist on the way to fulfilling my dreams of being a clinical psychologist. I have spent all of my adult life being the helper, and for the past two and a half years I have been forced to become the helpee. Today at 27 years old I am unable to get to the bathroom on my own some days due to pain let alone live independently or get the party started. I need £6,500 to get life changing surgery to remove the endometriosis that has been plaguing my life (among other complex health stuff) and get back on track. I’d be so grateful if you would be willing to share or make a donation to this life-changing cause.
Who am I?
I am Eleanor Smith (Ellie to most), 27 years old (millenial) and disabled a.f. I used to be a therapist with a dream of becoming a clinical psychologist. I used to have dreams of spending my life supporting my community, researching mental health, enjoying my hobbies and fitness and maybe one day even having a family as well as my wonderful friends. I am a staunch intersectional feminist, a queer, and a generally optimistic idealist. I'm also a lover of all things crafty and nerdy, talking at a hundred miles an hour, and a cracking good party with plenty of shots!
Unfortunately these at this point, describing myself in this way has started to feel like describing the life and loves of a stranger. I still have my Chosen Family (amazing pals) and I still have some hobbies, but there is an awful lot of me that is no longer there. I'm running out of optimism, and I'm not able to access almost any of the things I love anymore. I am not in any way ableist and believe you can have a great life and be disabled, but I have virtually no day-to-day functioning left.
What happened?
I have been told for years that my problems don’t have a cause don't exist, or the pain is functional, or that I’m too young to be so sick, or that I am looking for drugs. All these things have delayed my access to treatment and got me to here; here is rock bottom by the way *waves up at reader*. I’ve finally gotten to a place where I know what's probably wrong, but now I need help to fix it.
First, I was suspected (now confirmed ) to have Sphincter of Oddi dysfunction (SOD). SOD is debated to even exist and so as you can imagine the knowledge of it, and treatment of it, is also pretty poor. SOD means that the valve at the end of little tiny tubes connecting my liver, pancreas, and gallbladder to my digestive system doesn’t work. Which in turn means my digestive system doesn’t work, my POOP gets weird and I frequently end up with nasties in my blood that shouldn’t be there. I had a brief respite when a botox treatment for this worked two years ago but sadly it didn’t work so well the next time and so currently (other than stomach acid chill pills) it's untreated. SOD primarily affects women, and so of course, the research around this rare illness and treatment of it is crap.
Number two is suspected endometriosis (endo). Endometriosis is considered one of the most painful illnesses anyone can experience. Endo is a sneaky lil disease that likes to hide from all scans and tests in some instances; sometimes it can be so bad your organs are all stuck together and yet still no sign on any tests! And even though doctors know this, and know a laparoscopy is required to conclusively test a theoretical diagnosis, it is not what they offer.
Endo has recently been in the news quite a bit because it takes on average a woman 7-10 years to be diagnosed. I think the first time I probably mentioned my symptoms to a medical professional was about 14 years ago. I managed to get a gynaecologist referral about five years ago but again the scan was clear so I must be fine right? (despite having pretty much all the textbook hallmark symptoms). And yet, one exam with a gyno experienced in Endo who actually listened (thank goodness for my kind Mum funding a private session) and he could literally feel the endo inside me when he went in for a root around.
Of course, all of the above, the knock on effect on my social life, work, finances, self-esteem, plus the medical trauma and gaslighting I have now been experiencing for years, alongside the deterioration of my physical condition to a point where I now require carers to meet my basic needs, has had a significant effect on my mental health. The cumulation of all the issues has also meant that my immune system is shot. I am now picking up infections left, right and bleeding centre; so as you can imagine in a pandemic this is a real ole scary time. I was already prone to depression, and although I have done my absolute hardest to stay positive in the face of what feels like endless adversity, it has been hard. When you are a 27 year old who can’t bathe themselves, prepare their own food, and most days can’t leave the house, it feels incredibly lonely and hopeless.
It's also become abundantly clear that my executive dysfunction is mad bad, like off the scale unable to do things even when I was healthy. This in turn has fuelled my depression for years and it is highly probable I have undiagnosed ADHD.
What am I fund-raising for?
Firstly, and most pressing, I have a chance at having laparoscopic surgery for endometriosis by the end of June. This is my primary goal and is the biggest sum.
Why am I fundraising in the UK where I have the NHS you say? Well because despite my referrals going to the NHS gynaecologists more than 2 months ago now, I am still yet to hear anything, even just to acknowledge the referral. All NHS waiting lists are pretty bad, but gynaecology is notoriously difficult, and the pandemic has made the situation even more dire. At an estimate I would be looking at 6 months-a year to be triaged, and then potentially another wait for a first appointment (which could be with any doctor of any experience level) and then if they would affirm the need for surgery I would be looking at an 18m- 2 year + wait for surgery.
I am in constant pain every day to the extent that even walking to the bathroom is often hard. I have had frequent bouts of scary bleeding. I constantly look pregnant. I am constantly exhausted. I cannot live this way for that much longer, and I think this one treatment could make the biggest difference, because an official diagnosis would also hopefully minimise the dismissal of my symptoms and experiences, minimise the gaslighting, as well as actually improving my symptoms and quality of life. It would also give me access to different, and more effective, pain management and treatment options.
Whilst a laparoscopic surgery with excision is not necessarily curative (nothing is), it is my best shot at feeling better for as long as possible. It is £6,500 for my main goal to cover this. This is what I am fundraising for currently.
If I can manage to raise enough for the surgery, I will update the fundraiser to include some other goals, namely to try and help with my SOD care (it would be extremely helpful to access a good SOD doc, and there is one in Manchester, but I would have to have a couple of initial private consultations to get onto his NHS service), diagnosis of ADHD (which there is a very high probability of but I cannot access services for), and to help me cover some of my debts.
I am so damn tired, and trying to get appropriate medical support and get a disabled life set up is a full time job and then some. I have been lost in the system, and let down by incompetence so many times now I have lost count. I have been denied benefits on the basis of a piece of paper all because I was desperately trying to return to work no matter what the cost, and now I am being denied access to benefits due to errors and bureaucracy that has left me with £12 a month to live on after bills and rent. I am desperately trying to survive but as you can imagine it's pretty impossible not to dip into debts. I’ve thought about doing a gofundme for quite some time but haven’t really had it in me, however now it genuinely feels like a last stand and make or break time and like I have no other choice.
Thank you so much for reading! Even if you can’t donate anything please share it on your social media as spreading this page is super important! Stay safe, be kind, love and be loved, and stay hopeful <3.