I've raised £25000 to crowdfund complex Stage 4 Endometriosis and Adenomyosis surgery. ❤️💛
Organised by Cat Cherono Noono Bore Hallam
Story
Hello you beautiful human, 👋🏽
I’d like to say a huge thank you for taking the time to visit this page. Whether you donate, are unable to donate, or simply read the information about my journey with Endometriosis and Adenomyosis, it means a lot.
The most important thing is creating awareness about this medical condition and hopefully one day, a cure will be found. Of course, any donations will be gratefully received, but having knowledge about this condition really means a lot to me and other Endometriosis and Adenomyosis sufferers
My Diagnosis
As some of you know, I was diagnosed with complex and severe stage 4 Endometriosis and Adenomyosis in 2019. Therefore, I have been encouraged to raise money to treat my condition by people who have seen me, go through the worst pain ever; the physical and mental toll, is indescribable.
Why am I fundraising?
The truth is, asking for funds makes me feel extremely uncomfortable and really vulnerable. I have sought solutions relentlessly from the NHS and private healthcare providers. Sadly, the reality is my Endometriosis and Adenomyosis are the most severe and it requires complex surgery. I have been declined treatment by multiple providers due to the complexity.
I have been reluctant and truthfully, I felt embarrassed that I would be in the spotlight, feeling that people may perceive I am taking advantage of their kindness. I also felt for a long-time that I can do it, but it has not been easy. So, it has been a sense of horrendous guilt galore. I can now fully understand why patients feel so vulnerable and frankly exhausted.
FUNDRAISING METHODS
PAYPAL
Account: catherinehallam@mutumojaa.com
KENYAN ACCOUNT
NAME: Catherine Bore
BANK: Kenya Commercial Bank
BRANCH: University Way
ACCOUNT NUMBER: 1226094775
LOCATION: Nairobi, Kenya
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What is Endometriosis?
Endometriosis is a condition where tissue similar to the lining inside of a woman's uterus (which is called the endometrium) is found outside the uterus. This misplaced tissue can be found on the ovaries, fallopian tubes, the tissue lining your pelvis, the bowels, lungs, bladder and other organs. This can lead to debilitating pain.
What is Adenomyosis?
Adenomyosis is a condition that happens when the tissue that normally lines the inside of your uterus (called the endometrium) starts growing into the muscle wall of your uterus. This is not where it's supposed to be. This can make the uterus larger than normal along with other symptoms like bloating and pressure on the bladder or bowels.
THE IMPACT
Endometriosis affects 1 in 10 women. It is a vicious, horrendous illness that robs one of the ability to enjoy life fully. For several months since diagnosis, I have been bedridden, mainly suffering excruciating pain and blacking out from the pain at night and early morning. Many days, I have been unable to hold a glass of water or walk to the loo unassisted.
The medication provided barely touches the pain, and often feels like I am popping sweets, yet it is a strong medically prescribed pain relief medication. I often finally fall asleep, in pain, waiting up to repeat the cycle. I have no idea when the next flare-up will happen so I live with the dread that my body will attack me.
SURGERY
My condition affects my uterus, ovaries, and fallopian tubes. My Endometriosis is severe and is attached to my bowel. I need 3 surgeons present to operate on me; a gynaecologist, a colorectal surgeon and a urologist. I have been advised that I may end up having a temporary or permanent stoma. For information, the majority of women who have this condition only have one surgeon present; a gynaecologist.
I also have private medical cover(s) that have declined to pay for the treatment. They considered it complex and referred me to the NHS. There are also reduced hospitals that can operate on me due to the complexity.
TREATMENT
The treatment has a guide price of £10,000 - £25,000 and possibly more. I aim to pay for some of my treatment with my savings, but this is where I ask for help. I am terrible at asking for financial assistance; after all, it's taken me over 2 years, to seek alternative options, but I now recognise, that it will take more than myself.
WAITLIST
The NHS crisis is real. There are currently over 7 million people waiting for treatment. I have been on the NHS waitlist since 2020. I have seen several top consultants both on the NHS and privately.
There are frequent strikes by Doctors, Nurses, Paramedics, Midwives, Ambulance staff, Physiotherapists etc leading to a significant backlog.
It has been extremely difficult to know exactly when I receive treatment. So, I would like to be transparent. I have been sitting and waiting, with promises by doctors I will get treatment soon. It has not happened.
I could get a phone call next week or I could wait another 5 months. This has been part of the horrendous wait - not knowing. Also, if I did raise funds and get help sooner, how could I manage this? So as you can see, it's not been an easy decision. All I know, I want to feel normal and it is worth asking.
As I mentioned, it also raises awareness about Endometriosis.
CHARITY DREAM
I appreciate that I am asking for money to fund myself. I would also truly like to consider other Endometriosis and Adenomyosis sufferers who live in less developed countries. My dream is to start a charity that caters to this problem. This condition is expensive - the medication, consultant fees, operation costs, sanitary towels and other associated costs.
There are many young girls and women who cannot even afford sanitary towels or medication. I would also like to use some of the funds towards ending period poverty and period shaming. Many hospitals do not have the necessary information or equipment and do not perform laparoscopic surgery, which is the gold standard to treat Endometriosis and Adenomyosis.
Close to my heart is women's health and I would love to use some of the donations to help young girls and women in Africa and other countries. My dream is that the charity commits to alleviating these problems.
I recognise there are others who truly need our help. It is not only about me.
Any donations will be gratefully received, however big or small. Your thoughts and prayers will also be gratefully received. It all truly matters.
Thank you so much for reading this.
Cat
