Endometriosis UK
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Post op gp appointment

Had my gp appointment this morning incisions healing well my doctor had a report back saying no active endo found.

My doctor told me that the pill is doing it's job and suppressing the endo and that the spotting and slight bleeds are normal because the pill can't stop that.

I said what about the times I was taken off the pill for a little while and had really bad pain she said that was the endo because when I bleed it bleeds even with pill controlled periods because that is what used to happen when i took the pill back to back with break that is why they put me on the pill without breaks to stop my periods eg no bleeding no endo.

She thinks in my case I am getting pain because the nerves in my pelvis are sending pain signals to my brain she told me to think of it like when a person has had an limb amputation but they can still feel it even though it is no longer there and that is what is causing pelvic back and leg pain.

She said it can't possibly be my endo because it is not there because pill is surpressing it. Ishe also said I have to change my mindset to thinking from when I have pain that it is endo to it's not endo she thinks it will help.

So she told me I have diagnosed endo from 7 years ago but it is being successfully managed as long as I stay on the pill.

Has anybody had this said to them is it possible

She did not have full report of where they looked so I still don't know if they looked everywhere

I don't know what to believe but I know it is going to Ber hard to tell myself that every pain I get is not endo because I have felt that for 7 years.

2 Replies

I'm in a similar situation, in that a recent lap report came back showing no active endo. On here people have posted that there is no such thing as no active endo you either have it or you don't! I saw my consultant yesterday who showed me pics of my insides and the 'inactive endo' The consultant seemed to contradict himself saying it's not active, can't be causing pelvic pain, but then going on to discuss next steps of treatment with a hysterectomy a likely outcome!?! I was also told there may be deeper endo causing pain that they can't identify. I did get the feeling it was like the blind leading the blind, but i wasn't discharged, which is a huge step forward from my last lap! Many people on here recommend BSGE centres, were you treated in one of those? Mine was a general gynae so may consider asking for a referal from my GP.

1 like

I was told I couldn't be in pain, then the doctors realized I wasn't at a high enough dose. Also my Fallopian tube doesn't like moving but I'm awaiting to see with surgery.

Also if you have any adhesions from when you were diagnosed it could be causing pain too. Think about a sprained ankle, it's stuck and when you try to move it the wrong way or put pressure on it it hurts. It's the same thing with adhesions they don't want to move so your body can function. Is there a physiotherapist in your area who can loosen them?

Some people swear by castor oil packs.


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