CHARLIES ENDOMETRIOSIS JOURNEY

Hi my name is Charlie and I’m 25. I have been diagnosed with deep pelvic, vaginal - rectal and bowel endometriosis and am desperately trying to raise money for my private surgery that I need to improve my quality of life, improve pain and prevent me from losing part of my bowel completely.

MY STORY:

After years of intense pain, horrible periods and weird symptoms, last year everything got too much. In June, I had 4 A&E visits in 1 month caused by constant daily, debilitating pain in my stomach. It was a pain I had experienced before but never to this level or so frequently. While under the care of the NHS I was laughed at by gynaecologists, told I was exaggerating and made to feel like a crazy person. I’ve tried absolutely every hormonal treatment under the sun, had 6 ultrasounds and a CT only to be told my pain is just my period or ovulation and I should learn to deal with it. I have been put on a waiting list to see a gynaecologist for ‘suspected’ endometriosis but warned for a case like mine the wait for a consultation is at least 18 months and the wait for surgery (if ever approved) could be up to 5 years.

Desperate for any relief, I paid to see a leading endo specialist at a private hospital who immediately validated my pain, and after an MRI scan has confirmed that I have vaginal rectal, and bowel endometriosis. It is unclear whether my other organs are affected until we go in surgically but the deep endo (especially on my bowel) is clear to see in an MRI, as are adhesions sticking a lot of my organs together.

I have been told that, with surgery, I have a great chance of having improved symptoms for up to 5 years (obviously can change but this is the hope!). Unfortunately, endo has no cure and is a progressive illness meaning if I don’t get a surgery now the expectation is it will grow and spread to other organs. My bowel is the particular worry. The endo has already infiltrated my bowel wall muscle and is quite deep. This will continue to progress over time and without surgical intervention I risk losing bowel function and needing a stoma bag.

The surgery I have been approved for is a disc resection of my bowel (removing the top of my bowel), removing any endo tissue from the affected areas and removing any adhesions between my organs that are currently stuck together.

I am, reluctantly and desperately, asking for help.

My surgery will cost £15,790. The fee is so high due to it needing 2 surgeons in the room - 1 gynae endo specialist and 1 colon-rectal surgeon. This is inclusive of my whole 3-7 night stay in hospital, all surgeon fees and any complication are also covered! I am hoping to apply for finance to cover some of this cost however it is unsure yet how much I can access, and as I currently work part time due to the pain it is hard for me to raise this money myself. My endo specialist is one of the best in the world, leading the board of women’s health in Europe, so I am hopeful for a life with limited pain after this.

Anything at all you can give could help me access this life changing operation. Living like this has severely reduced my quality of life. At 25 years old I live in constant severe pain, sometimes so debilitating I can hardly stand. My whole life is currently governed by my pain and symptoms, making it hard to work, socialise or even just relax. I am having to put my career and life on hold to deal with this and it has so desperately affected my mental health. I truly don’t know how to continue if my life stays this way - the mental aspect of a chronic illness is not talked about enough.

1/10 women have endometriosis and yet it is one of the most under researched diseases. We know very little and the treatment options are very few and far between. After this surgery I hope to meet more people in this community and help in any way I can to raise awareness for this disease that is currently ruling my life.

If you’ve made it this far into my nervous ramble - thank you! Anything you can give would help tremendously. Even if you are unable to give, please consider sharing so I can reach as many people as possible. I hope one day to be able to live a normal life, free of debilitating pain.

Thank you x