Post negative laparoscopy DR appointment - advice needed

[Dartmouth93]

Hi ladies...nearly a month ago I had my first laparoscopy to be told no endo was found. I’ve just had a follow up with my Dr who said “there is no doubt in my mind that’s you have endometriosis”...which is reassuring because this is the first time I’ve had this said to me with such certainty. She said because I took my pill constantly with no breaks and didn’t have a period for nearly a year as advised by my consultant, this could have suppressed the visible endo so none was found on the day, but doesn’t mean I don’t have it. She thinks I should keep taking my pill as I am to control my symptoms...however I’m not sure what to do! Surely masking the issue isn’t fixing it...the endo needs removing. But for it to be visible I need to stop my pill and experience hell in order to stop suppressing the symptoms...I’m really not sure what to do. Any advice would be much appreciated x

[R2-Dee2]

Hey, I went through similar and ended up having to pay privately to see a specialist. By the time I had a laparoscopy with him, I had severe stage 4 endo. I also had adenomyosis. I had 2 laparoscopies before that where no endo was found. Your doctor sounds really supportive, so I wonder if they could refer to you a specialist? You're right in that the pill (or any hormone treatment) will only treat the symptoms, not the endo itself. You may choose to continue with the pill if it's helping, it's your choice. Good luck!

[Moon_maiden]

As R2-Dee2 I would suggest your GP either refers to a specialist which they may well do (amazing GP) or privately seeing a consultant. If the consultant knew you were on medication they should have anticipated this and you’re in catch 22.

Knowing the difficulty that I’m now having by not getting things I’d say speak to your GP about it, as much detail as you can.

[Dartmouth93]

Thank you both....I asked about being referred to a local specialist I have read about, but my DR said they won’t accept the referral because it’s the same hospital I had my surgery at, so because another gynae has discharged me on his team they won’t accept another referral...she said though I could get referred to a specialist a little bit further away so was thinking of looking at specialist within a further radius. It’s so difficult to know what to do, taking my pill has really helped the symptoms and im scarred to come off it and go back to what it was like before, but I feel like if I don’t I’m not going to get the right treatment I need x

[Moon_maiden in reply to Dartmouth93]

I had private lap, the consultant then added me to his NHS, then passed to the endo specialist all at the same hospital. The first consultant did the right thing according to the NICE guidelines. If you have a look it might give your GP some pointers, very useful info

[Chrissie66]

Hello 😊

This is tricky. Firstly, you have to know that there is no 100%, one size fits all cure for endometriosis. You will hear about the luck that women have with excision surgery or hysterectomy but the chances are still much higher that you can have major surgeries only for the endo to come back. And another fun fact, endo loves scar tissue, so every time you have surgery to ‘remove’ what’s currently there, you’re feeding the new endo which will almost inevitably pop up.

If the pill is keeping your endo under control, and your doctor is happy for you to stay on it then, although it sounds counterintuitive, you’re already doing the best thing. An exception to this will be if you want to start a family, when the best thing is to be clear of endo. But that’s a bridge to cross when you get there!