Funding for Chloe’s endometriosis excision surgery

Hi Lovelies,

my name is Chloe, I am a Scottish 24yr old who has a long standing battle with crippling endometriosis.

My experience with endometriosis over the years:

painful periods started for me when I was 14, I vividly remember being on my friends trampoline and experiencing really bad menstrual cramps. Since then, things escalated and I had lots of symptoms such as very painful periods, heavy bleeding, pain during bowel movements. After years of going to the DR, in July 2023 I got surgery for endometriosis from a gynaecologist, it was burnt off while some disease remained to be removed with someone with more advanced surgical skill.

Since my surgery, I had some weeks of being in less pain however very quickly my symptoms increased drastically. My symptoms were extreme daily pain, hip pain, nerve pain, leg pain, painful urination and pain passing bowel movements, painful bladder, urine incontinence, blood in stool, blood/protein in urine, back pain, migraines, painful and ruptured cysts, diarrhoea, constipation, mood swings, extreme fatigue, food and drink Intolerances, vomiting most days and severe nausea. I also experience symptoms with the menopause such as hair loss, hot flushes, disturbed sleep and joint pain. I was given a scan to which it found a large endometrioma (a complex cyst that comes with endometriosis, which has since ruptured) and kissing ovaries (they went back to normal position after the rupture, but they are still suspected to be wrapped in adhesions, but they were wrapped round my uterus) I have been admitted to hospital multiple times in the last couple of months for sometimes 1 week at a time. Since the endometriosis had grown rapidly, they arranged an MRI scan for me which had shown

* back of the uterus fused to the bowel

* front of the uterus fused to the bladder

* Rectovaginal endometriosis

* bladder endometriosis

* endometriosis of reproductive organs

I am in need of a very complex and major surgery, with multidisciplinary team involvement, to which the NHS waiting list is a very long time for this operation due to the complexity and the other people in need. All I know for certain about my operation is that I need to get the endometriosis removed from all areas affected (reproductive organs, urinary organs and bowel) and especially from my ureter, which they will put stents in from my kidney to my bladder to remove the disease by cutting it out, in ureter endometriosis, it can damage the kidney so much you loose your kidney, I am at risk of this and need to have regular kidney scans. They have told me they think I will get better, but I need the surgery in order to do so.

Treatments I’ve tried

I was started on chemically induced menopause after the pill, contraceptive injection and the mirena coil were all not effective in how aggressive the endometriosis wanted to grow. The impact on going through the menopause at such a young age has been tough, however it is temporary until surgery, I am on it to reduce the surgery complications so I know this is super important. Pain killer medication I have tried have mainly been opioids, which I am currently on dihydrocodine, oral morphine and anti sickness daily, which I still really struggle to keep my pain under control on a day to day basis.

Impact on my life

I have been unable to finish my final year of nursing and have also been unable to work, which I love my job and career so this has been very difficult. I really struggle day to day, if I walk for longer than an hour it causes a massive flare up and also sitting on chairs are very uncomfortable and causes days of severe pain so I spent most of my day in bed lying down. Dealing with severe chronic pain is debilitating and devastating , and especially not all the other symptoms that come along with it. It has been really tough for myself and the others around me, as I am not able to do the things I normally love doing.

About private surgery and what it means to me

The waiting list for the surgery I need is unbelievably long, even as an urgent surgery. So for myself and to get my life back I really need to go private, as much as I never wanted that to happen. In the UK private surgery for what I need is estimated 20-32K, as I also need a cystoscopy and colonoscopy. A private surgeon, confirmed after seeing my MRI findings, a major complex surgery for stage 4 endometriosis with reproductive, bowel and urinary input. Specalist surgeons cut the endometriosis out, which very few surgeons do, as burning it off has a very high chance of returning, which is what has happened. Private surgeons who I have spoken too, thinks me having it burnt off in the first place has caused worsening of symptoms. They also think my ruptured endometrioma which was not treated, has caused further complications.

I was in talks with a couple of surgeons, and had some plans. However, I am now planning on going to Abu Dhabi at the start of March to receive my surgery. A lovely multi-award, winning endometriosis specialist surgeon reached out and has tried to do everything he can to help. This is taking place at Danat Al Emarat Hospital for Women & Children, in Abu Dhabi, where I will be flying out at the start of March.

From imaging, it is suspected I need:

•Advanced excision of endometriosis

•Removing part of my bladder if the endometriosis has come through the bladder wall (I will have a catheter for a couple of weeks and a CT scan, 2 weeks after to ensure the bladder has healed)

•Bowel surgery

•Cystoscopy

•Colonoscopy

•Adhesiolysis (my endometriosis has caused lots of scar tissue, which has made my organs be in places they aren’t meant to be and is causing them not to work so well. So essentially freeing my organs from their very odd position haha)

•Ureter surgery (the tube that carries urine from the kidney to the bladder)

I also appreciate that right now, the UK is in a cost of living crisis and like me are struggling with this, not one part of me expects anyone to donate and this is very out of my comfort zone. But please know that any donations mean the absolute world to me as does ther support from family and friends. If you are suffering from endometriosis I sincerely hope you get all the help you deserve, as I know it’s misunderstood and the symptoms are unbelievably debilitating.

every single penny will go towards me getting the surgery to get my life back on track, this means everything to me. Surgery will mean hopefully have a long time either symptoms lessened or completely gone and will help preserve fertility as that is very compromised with severe endometriosis.

If you got this far reading this, thank you so much and I wish you all the health and happiness in the world.

Chloe xx