A little bit miffed and don't know what to do now...

[fudgecake21]

I was diagnosed with Endo in April 2013 via laparoscopy. I have had 2 surgeries to remove it. During the last surgery it had spread further and caused adhesions and my pain was a lot worse before the surgery. It had got to both my sacral ligaments, was still active in my POD like before, and I had what I quote from the summary of my surgery letter "the right ovary was encased in a pelvic wall defect with no active endometriosis in that pouch" before the surgery I got agonising pains in my right side that saw me hospitalised a few times. When I woke up from surgery I could feel slight reliefe but could still feel something not right on the right side.

Fast forward a year I have moved to London from Kent so I have had to change GP, they are now saying it's all in my head and that I have changed GPs "multiple times" !!!!!!!! I don't really know where to go from here I want to change my GP now but I'm scared they will say the same thing, they've taken me off all my pain medication and I'm due on in the next few days as I've had a few of my normal twinges (guess where, on my right side!!)

I just feel so desperate now and let down after fighting for years and years. Even having Endometriosis written in black and white and having photos from the laparoscopies themselves!

Sending you all healing hugs and pain free wishes xx

[Tboag]

Under a contract from the nhs, it states that we are well within our rights to be referred to a BSGE specialist centre for endo, have a look at a post by a lady called Lindle, read the one about finding a specialist,

Then go back to the docs and ask for referral to a specialist, if they say no, show them the contract and the BSGE list, there are a good few in London, find one that suit you and tell the gp the one you want,

Good luck

Xxx

[fudgecake21 in reply to Tboag]

Thank you so much for this info. I'm going to do my research and do as you've told me and go in armed with the information!

Xxx

[Tboag in reply to fudgecake21]

Be aware that some gps don't know anything about the contract nor do they know there are specialist centres,

I've been seeing a general gyne and gave been diagnosed with endo and Adenomyosis I've gad endo excised and a hysterectomy fir my adeno, still in pain, so I don't think he has found/excised all my endo, I'm now due to see a specialist on Friday, but that was on,y my doing, as gp didn't know anything I was telling him, I went armed with iPad and showed him the list and contract, thankfully he referred me there and then, I actually think he was quite embarrassed, about not knowing,

Read Lindles post, very informative.

Xxx

[carolineeballard]

I second what Tboag said, get your doctor to refer you to a BSGE centre. They can not refuse, though they may try to! Take names of your local specialist hospitals; I worked out which one was close to my home and easy to get to. I am now at a London Hospital and they have been amazing. And I have a endometriosis nurse who I can call and email when I need support.

Really surprised and shocked that the GP said that given that you have been diagnosed.