I'm So Confuuuuuuused!!!

Hello everyone. Thanks for all your help so far. I am really confused and need some advice!

So I have symptoms that led my GP to say that I probably have endometriosis and said he didn't want to refer me to gynaeocology immediately because lap investigations were risky in themselves. So he put me on the progesterone pill a couple of weeks ago. After advice from people here and reading about others experiences, I wrote a letter to my GP and dropped it off this morning saying I would like to be referred to the Cornwall endo centre which is BSGA approved.

I got home and found an email that had arrived when I was out in response to an enquiry I sent to the nurse at this centre and now I feel silly for asking my GP to refer me. Because she said that they also operate in a symptom management way and wouldn't perform a lap just to diagnose or to excise unless the symptoms weren't manageable with hormones.

I am obviously totally fine to do what is medically best, but people keep telling me and I read peoples posts elsewhere about where they have been put on the pill for a number of years and the endo has continued to grow silently (without symptoms) and cause problems for when they come off the pill (e.g. to get pregnant in a couple of years, and then experience fertility problems).

I am lucky that my symptoms have been manageable personally, so I wouldn't be referred for a lap by the sounds of it. But the information I keep reading feels conflicting and ALL I care about it not compromising my fertility. I know that people also seem to get told different things about starting families earlier or starting them at the time they would have done normally.

So I just don't know what I should be doing or expecting.

5 Replies

  • Especially because I have also heard that the amount of symptoms you have doesn't necessarily correlate with the stage of endometriosis. So if it's already bad then I leave it and scar tissue etc forms... I don't know I am just confused about what i should be expecting to happen as from everythign I have read and advice I have taken this wasn't what I was expecting. Thanks!

  • Hi please look up Lindle on here she will know what to do. I say this because both your GP and the centre are wrong and Lindle will know exactly how to help.

  • Thanks so much Jean!

  • Hi - this nurse has advised you totally against the protocol for suspected endo. This section relates to referral to secondary care:

    'The recommendation that laparoscopy is the gold standard diagnostic test for endometriosis is based on the Royal College of Obstetrician and Gynaecologists guideline The investigation and management of endometriosis[RCOG, 2006] and the European Society of Human Reproduction and Embryology (ESHRE) guideline Management of women with endometriosis[Dunselman et al, 2014]. Both guidelines recommend visual inspection of the pelvis by laparoscopy with histological examination of specimens collected during laparoscopy to confirm the presence of endometriosis.

    Establishing a diagnosis of endometriosis on the basis of symptoms alone can be difficult as symptoms are variable and may mimic other conditions [Dunselman et al, 2014].'

    The full text is here:


    It is well established that hormonal medication without diagnosis (this is called expectant treatment) can mask disease and you have a right to a lap. You may have to travel a little further to another centre but it is worth it in the long run. We have been talking privately as you know so send me a quick message so we can consider the best course. x

  • Thanks Linda I have messaged you! Sorry to take up your time again x

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