Advice please: Hello again, following my... - Endometriosis UK

Endometriosis UK

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Advice please

Aimeebish1992 profile image
2 Replies

Hello again, following my last post about being in the dark I am still no clearer.

I had an op this January where they removed a 15cm endometrotic cyst and my left ovary and tube and I was told that I had endometriosis.

I haven't had much advice or reassurance during my follow up reviews. I had an ultrasound in March to see if my other ovary was ok...because I was told in Jan that this one also had a cyst.

The ultrasound came back normal with no sign of endo...so my gyni has discharged me from her care and said I should only return when my symptoms get worse.

My worry is....I didn't know I had the endo cyst until it was too late and I had to get my ovary remoned (I'm 23) I was told if I was older I would of got a hystroticmy but because of my age and not having any kids this was ruled out.

So I'm now led to believe I do not have any sign of endo any more....I'm confused as I thought it was something that doesn't just go? I'm scared In case it goes into my one and only ovary.

I'm really disappointed with the nhs I even went to an endo specialist clinic which someone recommended me to go to on here...but he basically said the same, saying that there may be a chance my endo could go into that ovary...but that's not something they would monitor!? Advice please.

Thanks, Aimee.

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Aimeebish1992 profile image
Aimeebish1992
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carolineeballard profile image
carolineeballard

I would get your GP to refer you back to the endo specialist. I know from my mums experience that they like signing you off and it can take a while to get referred again.

I would have thought they would be monitoring you. I too had a 15cm chocolate cyst removed from my left ovary. But they saved my ovary but left a smaller cyst which has now grown, so I need another op. But they only knew it had grown because I have had other scans.

And about your endo being gone, I'm not too sure about that. I can only relate to my own experience, in my lap they discovered endo in other places. like little patches, but they only told me about this after I asked them if there was endo present anywhere else.

At the moment i feel very let down by the nhs too. I made an official complaint and had my story published in my local paper.

You should try to seek answers to your worries. Maybe you could ring the receptionist of your doctor.

Breadmouse profile image
Breadmouse

Hi Aimee. I had a similar experience but I'm older. I had a large cyst and also lost my ovary. I too was surprised that no follow ups were ever done. This was 2 years ago and I'm very aware of my body now. My gp is very good and when I thought I had signs of another cyst she sent me straight for another ultrasound. I do find it surprising that as you are known to have another cyst that they aren't monitoring it

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