My pain has suddenly worsened, but I can't get a gynae appt for 6 months, anyone have the same problem??

I was diagnosed with endometriosis 3 years ago after going private as my symptoms were sudden and extreme an I felt like I just couldn't wait. After being told by the head gynae he was 100% sure I didn't have endo, but they would do a lap anyway to put my mind at ease, it turned out I had stage 4 endo for which I underwent decapeptyl injections for 12 months.

I was then told 2 years ago my endo had completely vanished and discharged from the gynae clinic. (after an appt last month I now know tis not to be true, and I've seen the lap pictures that prove it!)

I've had no treatment since, and I started to get the odd twinge about 6 months ago so asked my GP to refer me back to the gynae, then this week the pain has hit me like a brick wall and my GP said that if it's endo they can't do anything I need to see the gynae but the gynae I'm under doesn't have any appt. for 6 months.

I'm currently trying for a baby and know that if I've got stage 4 endo again this is most likely not going to happen.

I know I need surgery to remove the endo, (because I can't have a hormone treatment if trying to conceive) does anyone know if you can be put on the surgery list with out physically seeing the gynae?

I feel like I'm stuck and no one can help me!

4 Replies

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  • no you cannot get on a surgery list without seeing the surgeon 1st, but you certainly do not need to see the same surgeon as before and i would suggest you prepare to travel further in order to get a quicker appointment as well as to see an endo expert surgeon.

    Have a look on the bsge website for the accredited endo centres as they are there for stage 4 endo specifically but do carry out work on less invasive endo too.

    bsge.org.uk/ec-BSGE-accredi...

    The NHS last year published guidelines for the `handing of stage 4 or severe endo..always useful to read through...

    england.nhs.uk/wp-content/u...

    As a patient you have patient choice to see any hospital or doctor of your chosing. note down the details of at least one endo centre and ask you GP to refer you to it. check they do NHS work as one or two listed are private only.

    in the meantime speak to your GP about meds to stop you having periods to see if that eases your pain while you await a new surgery. I appreciate you are wanting TTC but you must be in the best shape you can be and that means taking a break now and looking after your own health 1st.

    Something like norethisterone rapidly stops periods, or combi birth control taken back to back can stop periods too. Get your self back to health and then you can crack on with baby making and will probably be in a much better position for it.

    being stage 4 doesn't automatically mean infertility by any means. It's pure luck where the endo and adhsions have formed and it is quite possible to have clear tubes and at least a clear ovary even though you may be riddled with endo lesions elsewhere.

    A new lap op would allow the endo situation to be checked out, adhesions to be cut back, an HSG dye test to make sure your tubes are still clear and check the situation with each ovary too.

    Best of luck getting you pains under control and getting a surgery quicker too.

  • Thanks this has been really useful, I'm speaking to my GP tomorrow so going to look at the accredited endo centres and see if he will refer me to one of them.

  • I am in the same situation and have been in so much pain for the past 3 months that I decided to go private after my surgery was canceled twice on the nhs. It is going to cost me a fortune( I've had to borrow money) but at least I won't have to be left waiting in pain. Good luck to you x

  • Thanks Marion78 its comforting to know I'm not alone but would almost be better if I were. Good luck, I hope the surgery goes well x

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