Why even when diagnosed is it still a bat... - Endometriosis UK

Endometriosis UK
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Why even when diagnosed is it still a battle to be heard?

Eugienie
Eugienie

Hello everyone. My name is Alice and I was diagnosed with endometriosis in March this year after 4 years of symptoms. They found it in my pouch of douglas and (even though I was told if they found it they would leave it and send me to a specialist surgeon) the surgeon burnt it out. Anyhoo.. for two months after I was pain free and felt the best I had in years. It was a short lived feeling as after 2/3 months my pain returned with a vengeance. Going back and forth for ages to my GP for pain meds etc and then I get sent to a endometriosis specialist (woohoo). I left my appointment with her in tears. She told me endometriosis is a disease that cannot spread or return and that my endo (as it was burnt out) would be gone so there is no point in doing any more surgery. What the hell??? Everything I’ve researched points to the fact that endo can and will spread and return, especially if burnt out rather than cut out. I feel at a complete loss. She told me I have this disease for the rest of my life and at best I can try and manage the pain with pills. Absolutely heartbroken.

Has anyone been in a similar experience?

2 Replies
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Hello,

I am so sorry to hear about your experience :(

I am literally on here trying to find more out about endo because I was diagnosed after keyhole surgery on Sunday for my appendix removing but my appendix is actually stuck to my bowel with endometriosis. I’m literally in the blue don’t know how bad it is, she just showed me a picture of some pink with black dots in it.

I have read that endo isn’t curable and needs to be managed by either trying to stop the periods with birth control or having a baby. But it can always come back. I hope you find the answers you are looking for.

We are all in this together !! 😘

Not quite the same experience, but you're right that the hassle doesn't end when you get diagnosed! I was discharged from the hospital where they did my lap (I moved out of the area for a new job), and I went to the GP in my new part of London for a referral. That was in October, and I've been given an appointment for March, after weeks and weeks of calling them and asking them to speed up my referral.

Find a new GP who will take you seriously. I had a GP massively dismiss my pain before I was diagnosed (told me it was chlamydia, even though I'd been in a monogamous relationship for 3 years and in any case had been STI tested a month before rule that possibility out.) I walked out of the appointment and booked one a week later with a different GP who did listen to me.

Good luck x

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