Need some advice please :)

Hi everyone, Im just after some advice.

Bit of background, I was diagnosed with severe and extensive endo in august last year, following an appointment in october with my consultant, I have been waiting for further surgery.. 10 months ago! I have been in some severe pain over the course of those 10 months and it just seems to be getting worse. I am experiencing pain in my hip bone, left leg and lower back, and it is making walking extremely tiring.

I have managed to get a doctors appointment for today but wanted advice on getting them to actually listen and take me seriously. For months i have been fobbed off and just told to take cocodamol, which isnt actually doing anything except making me feel light headed. Im not a very stern person, and dont like telling people how to do their jib but i am really suffering and need something more than just cocodamol.

Sorry for the rant, any advice would be greatly appreciated

5 Replies

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  • Where in the UK are you and are you being seen in a specialist BSGE centre? There is mention in your previous post of having your endo burned but your severity should be excised and only dealt with in a specialist centre. Have a look at my post on the referral pathway, how to find a specialist and on rectovaginal and uterosacral ligament endo. x

  • Hi Lindle Im in Worcester. Im not currently being seen in a specialist BSGE center as of yet but will query about that when I have my doctors appointment this afternoon.

    Thank you for the advice :) x

  • Hi Ella - it is totally against NHS regulations for a general gynae to have operated on you. As soon as they saw the complexity of your endo they should have referred you on. Take copies of the NHS England contract for treatment of severe endo and the BSGE list and give to your GP. At some point you really should make a formal complaint to the Royal College of Gynaecologists who are responsible for setting these standards. That is the only way we can hope to stop this.

    england.nhs.uk/commissionin...

    bsge.org.uk/centre/

    bsge.org.uk/bsge-provisiona...

  • I was unaware of all of that information. It is actually quite scary. Ive tried to be firm with the doctors before but am never taken seriously. Maybe they will be a bit different if I was to go in armed with that information.

    Its not right and things need to change to help women going through it. I find it hard to believe that I am still waiting for treatment almost a year after being told I had severe and extensive endometriosis. I think maybe a complaint is in order.

    I cant thank you enough for your help Lindle

    x

  • Could you take someone with you to the GP appointment? Or send a letter details your issue first, so the GP knows ahead what your issues are.

    Hope you getting sorted soon.

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