Endometriosis UK
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Should I get a second opinion?

Hi all,

I had a laparoscopy last May for endometriosis and I am sure it has returned. I was on 6 months of Zoladex then the pill since then and over the past 5 months I have been in pain since.

I went back to my gynae for an appointment and he was absolutely useless!! Had such an awful internal examination I came away bleeding and apart from being told I needed a bone density scan to see how the Zoladex affected me, he said he would not do another laparoscopy within 2 years!!

Has anyone else heard this or do you think I should get a second opinion? The pain is just getting worse and I am reluctant to keep taking strong pain relief constantly!!

Thanks in advance xxx

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So sorry to hear about your experience. I would say, definitely ask for a second opinion. Is there a BGSE (https://www.bsge-online.org.uk/) facility near you? I found a vast difference between the general gynae's approach and the endo specialist's. Thinking of you and wishing you well. xx

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BSGE centres will take patients who have previously had Endo that is refractory so I would ask your GP to refer you to one for a second opinion.

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Im under BSGE and my endo did return after surgery. Within weeks. Tried pill, then Zoladex then ultrasound to confirm which it did. My consultant wont do more surgery, yet or at all, im not sure. If endo doesnt respond to surgery then theres no point keep cutting it out. Surgery causes adhesions, you have risk of infection and then the dangers of anasthetic. Thats why your Gynae is reluctant to operare again. Hes being sensible in my opinion. Im being put on some Estrogen Blockers as everything else has failed! Good luck! Xx

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Hey there sorry to here about your pain Hun. Yes I would definitely get 2nd opinion as then you can decide what to do. I was on zoladex for 2 years and my bones have gone really bad feel like a old women. This illness is horrible I have stage 4 Endo.....childbirth pain every month...😢😢and no body understands how it effects us. Try and start pill and take it back to back without breaks. I done that and after few months pain settled but I bleed to death, it's hard to say what helps us but we have to try different things. I hope you get things sorted sending you best of luck Hun xxxx

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I've been on Zoladex now for 5 years and I also take a daily tablet, Arimidex (which also blocks Oestrogen).

I've had multiple surgeries and had my womb and ovaries removed more than 13 years ago - it isn't the cure!

I would strongly suggest you try and get referred to am endometriosis specialist as a general gynaecologist is usually useless and lacking in knowledge and empathy as well, in my opinion.

After 5 complex operations, my specialist does not want to do more surgery on me, ever, as my endometriosis always comes back.

The injections and drugs aren't pleasant but I couldn't have any quality of life without them.

I'd suggest a proper specialist and also you should press for more Zoladex if it helps you. Arimidex is also brilliant. Getting them to let you have these things can be difficult so just emphasise how bad this is and make a fuss! Good luck!

Morag

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Hi there,

Sorry to hear you're in discomfort, as others have said, I would get a second opinion as soon as possible.

I had two 6m rounds of Zoladex and both times my Endo came back within a year. Same happened when I had a 6m course of Prostap. I luckily had a consultant who trusted me and operated every time I asked - and rightly so as there was Endo there every time! However I ended up having 9 ops, the most ever being 12m apart. I had a lot of side effects with Zoladex and Prostap and as they didn't seem to keep the Endo at bay any longer than when I just tricycled taking the Pill I decided not to have any further courses.

Goodluck x

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