Support Leaf’s journey to Endometriosis diagnosis

Hello, my name is leaf and I’m a 25 year old disabled artist from England.

For many years, I’ve had to push aside symptoms like pain, nausea, dizziness, and so much more that I was told is “normal” for people my age. I’ve been told it’s all in my head or that I’m exaggerating my symptoms…and I believed my doctors. For many years, the signs of endometriosis were all there but I ignored them and pushed on, no matter how uncomfortable or in pain I actually was. But it got too much, eventually, so I moved to a new GP.

after years of medical gaslighting and crying from disappointment after appointments over and over like a broken record, I spoke to a GP this week who finally believed me, who agreed it sounded exactly like endometriosis, and sent a referral to gynaecology immediately. Unfortunately, since covid, the waiting times have been blown out the waters, with women and AFAB people in the uk waiting anywhere from a year to 10 years just to speak to a gynaecologist, and that’s with the hope they will listen. The average diagnosis of Endometriosis now with the NHS waiting times is 7-9 years from referral.

i got the link to book my appointment this morning, excited to finally start this journey and maybe get my life back…only to be met with no appointments available in any clinics within the next year or 2.

Unfortunately, my symptoms are no longer ones I can manage alone or can ignore anymore. Every morning I wake up with dull aches, extreme fatigue, cramping, dizziness, nausea, migraines- and all of this means I can’t work, nor can I even focus on things I want to do for fun. I gaslit myself long enough to believe maybe this was a reach and maybe endometriosis is too serious of a condition for me to have, until august, when I had a period consisting ENTIRELY of clots, and no flow at all, that made me repeatedly pass out and feel extremely dizzy for 3 days. It was this that woke me up and made me realise that maybe this isn’t just in my head, and that this is actually serious now. This could be what has been making me ill all these years.

But because I can’t work, and don’t have a steady income (or any, sometimes), I don’t have the money to support this journey myself.

I’ve felt so alone and isolated, having to cancel days out, dates, losing friends, struggling to keep up with friends or events online- I want my life back. Doctors for years have been telling me to “act my age and go out and have fun!” And I want to. But I can’t until I know what’s happening and can have treatment that will help me feel well enough TO do these things. I want to travel and meet friends and go to concerts…it’s so hard to do that these days without ending up in A&E or having month long flare ups.

Endometriosis is so much more than pain. It’s bleeding through clothes, it’s being doubled over trying not to throw up, it’s passing out or having tremors, it’s feeling too unwell to eat, being scared to go to the bathroom because of how painful it will be, painful penetration (which effects ultrasounds, using internal sanitary products like tampons, medical examinations, and smear tests which are extremely important for checking for cancer and other problems with the cervix/vagina), it’s migraines 4-5 times a week, emotional breakdowns over wondering how long it will be before you feel well again, not being able to sleep while also being too tired to move, rib pain, back pain, leg pain, losing jobs, losing friendships, missing out on fun activities, and overall…it makes you feel lifeless.

Hopeless.

so please, if anyone can, please help me in figuring out once and for all what is happening so I can finally get my life back.

The initial cost will be for me to see a consultant, and the rest will work up to the Laparoscopic surgery needed to diagnose endometriosis.

This is how the funds will be used:

£250 is to see a consultant who can agree on the surgery referral

£5000* is what I’ve seen online the surgeries can START at. I’m a little scared how much more it could potentially be, however due to a recent belly piercing, I’ve been told I wouldn’t be able to have the surgery for another 6-7 months anyway (I really love my piercing and don’t want it to get infected or close up by taking it out too early) which gives me a lot more time to save as much as possible. Any extra funds will go to recovery, and if I need to see anyone else before/after the surgery

thank you for reading my story