
Support Ella’s Endometriosis Journey
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Hi, my name is Ella and I’m fundraising for a potentially life-saving and very complicated surgery abroad in Romania, Bucharest, to help me manage debilitating daily pain and chronic symptoms due to adenomyosis and endometriosis, and rehab and treatment for potentially a whole host of other chronic illnesses that have taken my quality of life from me since last year.
Since my private gallbladder removal surgery 2 months ago which we also needed to fundraise for and will still be paying back for years to come (we reached half our target goal) - I have had the most excruciating suspected adenomyosis/endometriosis/nutcracker syndrome flare up which has lasted months and has left me in debilitating pain, nausea and fatigue almost 24 hours a day. I have been having daily excruitating uterine and ovary pain that has left me in tears and seriously considering my suicide options. My boyfriend, Mum and I don’t currently work so we are relying on mine and my boyfriend’s savings.
NHS gynaecology and endometriosis specialist waiting times of up to 2 years for just a diagnostic laparoscopy is simply not good enough and potentially costing lives to those with extremely vulnerable mental health states such as myself. My suicidal ideation has been at its worst - in some ways, I’ve never wanted to fight so hard for my life, but at the same time, have never felt closer to suicide - feeling so defeated, medically gaslighted and hopeless as I’m not able to access the care I need without further help.
Pain medication barely touches the pain, I take sedatives at night to sleep and anti nausea 3 times a day which only helps temporarily. My bedside table looks like a pharmacy. I can’t do the things I used to do, like go out for longer than an hour, or even sit at my computer without pain after an hour. We have been exhausting all options and finally feel desperate enough for surgery as soon as possible as I just cannot imagine carrying on in this vain any longer.
I wake up every day in debilitating pain, nausea, and extreme fatigue, and have done for the past 3 months. This ebbs and flows and gets worse throughout the day. I have been grieving my body, finding it hard to accept how much is has deteriorated in such a short space of time, that this may be my new normal. Tears do not stop flowing. No one, especially not a young 28 year old should, be going through this amount of pain on a daily basis.
My mental health is rock bottom. It has never been amazing, but currently it is in the worst state it has ever been in, with daily anxiety attacks, crying multiple times a day, daily suicidal thoughts and extreme depressive episodes due to the chronic pain and illness I feel. Countless GP visits, crying to him, A&E visits and doctor’s appointments. I’m tired of fighting. I realised don’t want to die - I want to fall back in love with life again - but I just want the suffering and pain to end. At times felt I had no other way to stop this physical and mental torture.
Bucharest is an option of hope. But I’m still terrified - will this help? How long will this help for? My boyfriend said, we have to try something.
Endometriosis is seriously underfunded and under researched, and there is not enough help for women out there. My pain has become so bad that we are seeking urgent help and surgery abroad with a multidisciplinary endometriosis specialist team in Romania. Private options in UK have proved to be completely unaffordable but there is a ray of hope in paying for surgery to potentially get me the care and relief I desperately need.
Surgery costs will range anywhere from £5.5-8k, depending on the extent of the endometriosis which could be affecting my bowel, kidney, bladder, ovaries and other organs. Endometriosis can only be removed through expert exision surgery but can grow back. Adenomyosis can be cured with a hysterectomy, which will add further costs to the surgery. (£1k+) Flights, food and accommodation will work out to around £1k. I will need aftercare in the form of physical therapy and definitely psychologically, and also am looking into further tests such as nutcracker syndrome, MCAS, POTs and hEDs, which my GP has not been very in board with and I may need to seek private specialists yet again. Hence we are asking for help of up to £8,500k to help ease the huge financial burden my health has put on me, my boyfriend and my family.
There is no definitive way to see how bad the extent of endometriosis is without opening a person up and looking inside with a laparoscopy, so we won’t know the definitive costs until after surgery - but if we do have any leftover money, it will be used for further medical testing / specialists / rehab to help give back my quality of life.
’m absolutely terrified - I have never been so scared in my life. As an extremely anxious Autistic individual, who very much thrives on the known, routine, and predictability, being thrown into this world of endometriosis and adenomyosis has completely tipped my world upside down. Treatment options are very much, “you have to try it and see if it helps.” I’m not sure what my life is going to look like and I need a lot of reassurance to get through each day. But hopefully I can fight to live for many years to come. I want to. But I’m terrified. I hope I can do this.
A note from my Tiago:
Hello Ella’s partner here,
I just wanted to say a few things from my
Perspective. I’ve had the joy of spending the last 6 years of my life with my incredible girlfriend Ella, she’s so sweet and caring, such a laugh to be around and we’ve been inseparable ever since. We’ve had so many memories, it’s been the best time of our lives so far.
Ella has always suffered with chronic health pains, she has been a trouper and has learned to just deal with it. She should never have had to and now that it’s become much worse, she cannot deal with it. We’ve had countless journeys to A and E with little to no results, multiple calls to crisis lines for her mental health support but not finding any long term solution. We’re at a breaking point and desperate for relief for Ella and here mental anguish she has to go through every day.
It’s been months of waking up next to my partner and trying to comfort her as she’s up crying, scared for her life and not thinking she will be able to last until she can get the help she so rightly deserves. Dealing with this has been hell on earth for her and I’ve just been trying my best to soothe her mind through it and it has been torture seeing my partner in agony everyday. I’ll be doing everything in my power to help her through this even if she says she feels like a burden on our lives. She needs hope and I hope people can show her she is special and that her life is worth fighting for.
Organizer
Ella Yung
Organizer
England