graded endo

Hi All,

I have never been graded on what stage my endo is.

I have had 3 laps now (all ablation surgeries) , the first one I was told a small amount was found, the second i was told that more had been found and that my left ovary had to be released by this I'm guessing the endo had spread over my ovary. My gp advised this was probably the meaning of this (never really had much feed back from my laps and never been under a specialist) and on my third lap which was in Dec i was told that only minimal endo was found and the surgeon couldn't understand why i was in so much pain :/

The reason in this post is that I'm now 7 months post op and in a lot of pain again, well have been for a few months now. On the right side, low down which is where i had pains before my last lap. I went to my gp last month and I have a referral to see the same Dr/Gynae next month who did my last lap however I'm concerned that him saying he only found minimal endo and couldn't understand why i am in so much pain, is it a good idea going back to the same person. I was wondering whether to see if i can the appointment cancelled and have a referral straight to the BSGE unit at Castle Hill which is only 20 minutes from where i live however i have been informed that it depends on the severity of your endo and I'm not sure my is severe as I don't know the grading. I just cant help but think that they maybe missing endo somewhere though, I've heard this can be quite common. Also i thought it didn't matter on how much you have in the way that one lady can have small amount and really suffer and another could have a widespread of endo and not suffer as much.

Any advice on this i would be very grateful.

Thank you :)

5 Replies

  • I am pretty certain that under NHS choices you can go wherever you want, regardless of 'grade'. That's an American system anyway. I asked to be referred to Castle Hill and my consultant said no because he is a specialist and that's all I need. He is not and I don't want him operating on me!! Are you in a position to pay for a private consultation? I have read about people phoning and getting a private appointment with one of the two doctors at Castle Hill (both also at the Spire in Anlaby), but then being referred back into the NHS for treatment (still by the specialist).

  • Can you go back to your GP to ask for a referral to Castle Hill? I was referred by my GP, I never even saw a general gynaecologist. If you are not happy with your current consultant you have the right to ask for someone else. You shouldn't have to go private for that (you may have to be pushy with your GP, but you have the right to be seen by someone of your choice).

  • To be honest, my situation has only changed in the last week or so. Until now it's been easier for me to be monitored by local hospital. But now I need to go ahead with an operation and I don't want them to do it. Exploring a few options today! Thank you for your advice!

  • Marie9 is right, anyone with even suspected endometriosis can be referred to a BSGE. Your consultant doesn't sound good, I would definitely ask for a referral to a BSGE centre. They are specialist in the field and because endometriosis is so complicated and can grow in so many places, a specialist will be best.

  • Thank you both for your replies :)

    I'm going to go back to my GP and asked to be referred and hopefully they shouldn't refuse it. However if I feel I aren't getting anywhere I may have to try private.

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