advise / support please: Hi all, So I have... - Endometriosis UK

Endometriosis UK

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advise / support please

white61 profile image
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Hi all,

So I have all the symptoms of endometriosis but I don’t have it… so just going to give some background info:

so I had a big surgery in 2020 to remove my right ovary and a 40cm cyst. Then in 2022 I had keyhole surgery and no endometriosis was seen, in September 2024 I had an MRI Scan and endometriosis was seen behind my uterus and at the top of my vagina, I had keyhole surgery on 28/01/25 and no endometriosis was seen… just my tube was stuck to the side of me which has now been sorted in surgery, they think this could of been caused by an infection.

So I just wanted to rant to see if anyone else is in the same boat as me?! I’m baffled how endometriosis was seen on the MRI scan but not seen in surgery - yes the surgeon is an endometriosis specialist… just wondered if anyone else has all the symptoms of endometriosis but has been told several times that you don’t have it. I was so so upset because I’ve had to beg to be listened to and now I feel like an idiot and feel as if I’m crazy and making all the pain up:(

I’m on the Prostap injection which is making me very sick but I’m waiting to start the HRT medication, it has helped with the pain a lot but the side effects aren’t nice at the moment, I’ve been advised to carry this on as my ovary is slightly bigger than it should be so the menopause should shut down my ovary and hopefully settle the pain but I don’t want to be on chemical menopause forever …

I have always had ovarian cysts that have caused me a lot of pain, quite a few I’ve needed surgery for it to be removed this started when I was just 14… a lot of the cysts do go by themselves but cause me agony… could my pain all be linked to the ovarian cysts that I keep getting that cause me agony?! Has anyone else experienced the same thing as me? Just feel so lost, so desperate for an answer. The consultant guessed and said maybe something is wrong with my bowel or my nerves in my back are super sensitive but basically I’ll have to go back to the GP and start from square one again and go through years of waiting and nagging to try and get some sort of answer… just baffled by it all.

A consultant previously said that now the guidelines have changed and lots of women are ‘clear’ for endometriosis in surgery but have all the symptoms and now women are being diagnosed with it without surgery because so many woman are struggling like me, not sure if this is true or a load of waffle but has anyone else experienced this?

Many thanks,

Emma

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me94 profile image
me94

Happened to me too. Mri showed adhesions and bowel stuck to uterus but was no adhesions when I had the surgery I did have some endo though and surgey was done with endo specialist

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