lost

I have lost all hope and have no idea what to do I had my follow up appointment today after my 2nd lap in Jan I was showed the pictures they said no endo was found that I do not have endo did not seem to care I was diagnosed with endo 8 years ago seems I am cured my mum said HOW it is incurable she said who told you that😬 and even said that pregnancy is a cure

Had no idea why I was still on then pill told her my doctor told me to stay on it otherwise things will get bad to that she said is your doctor a gyni. Was not happy that I wanted to take photos of the images.

I am totally fed up I wanted to see the consultant that operated on me not a side kick she did go and talk to him but came back and said he agreed with everything she said I have no chance of being referred again.

I am stuck

4 Replies

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  • Hi poor you that all sounds very insensitive and no help at all if you're having endo symptoms and been told you have endo then you must have it. It may not be obvious on viewing was your surgeon an endo specialist? Endo is likely to be more visible at certain times in your cycle hence why the pill helps as it will keep menstruation to a minimum unless your unlucky enough to have permanent menstruation like me. You might need to ask for a second opinion or question your first opinion either way you are entitled to a better explanation than there's no endo. Why not contact the hospital complaints dept or patient advice & liaison with your questions. Regardless of what they found you will still have symptoms that require treatment.

    Good luck x

  • I would formally request a copy of your notes and check if all possible places were checked sometimes only the obvious ones are. I would also get a copy of your original op and diagnosis from 7 years ago. Start a detailed symptoms log too. Then you have the evidence to make a case for a re referral which your GP can do ( it's not up to the consultant) perhaps elsewhere where you will be listened to about your symptoms

  • I agree, especially with what starry says about getting notes etc.

    Also, talk to the trained advisors at 'Endo Uk' who host this site on 'Health Unlocked'. There is a link/logo at the top of the page, that will take you to their website, where you will find contact info for phone and email. Ask them about how best to approach your GP, so as to get him to refer you to a BSGE Clinic = specialist 'Endo' clinic, with specialist gynaes who only treat endo.

    Most general gynaes do not have the skills to access all the hiding places in the abdominal cavity, to see if there is anything there or not ... nor do they always recognise all the forms of Endo.

    Hope tis helps, take care.

  • Which area do you live in? And were you seen by your local hospital or at your nearest endo treatment centre?

    Big hugs sharon

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