Hi all, I was just wondering how you was diagnosed with endo?

I have PCOS and I am currently presenting all symptoms for endo. I have had to reduce my hours at work due to the pain. I had a MRI 18 days ago and results have come back saying "no convincing signs of endometriosis" I feel like I am going out of my mind! Any advice would be much appreciated.

Thankyou :)

9 Replies

  • The only way to be diagnosed is by having a surgery to see what is actually there. Some women are found to have endo while having an op for something else in the tummy.

    Some are diagnosed in a key hole op specifically looking for endo due to all their other symptoms.

    Either way surgery is the one thing in common.

    Symptoms can give clues to a lady having endo. and a scan that picks up blood filled endometrioma also hints at endo so too does finding that an ovary is stuck with adhesions in the wrong location.

    With the big clues, you can safely say some one has suspected endo.

    the surgery will identify where it is growing, how big each patch is, how deep it is growing, and also look for other damaging signs like scarring and adhesions. a surgery can also check on whether your fertility is looking good, looking under threat or already compromised and the tubes blocked up stopping the egg reaching the womb.

    Even if the surgery shows nothing visible on surfaces and endo grows on surfaces of anything. There is another very similar condition called adenomyoisis which has much the same monthly cycle of pains, only this only grows inside the muscle walls of the uterus and is hidden from view in most cases.

    It can show up on scans as tell tale lumpy muscle walls where the blood of a period is trapped in little lumps or blood blisters within the muscle tissue. Adeno can be removed entirely with a husterectomy to remove the uterus muscle walls containing the adeno cells.

    Please push for a lap op it is the only way to be sure with endo. It really is nigh on inpossible to see all the endo locations even with an MRI as it is a surface growth speading sideways. not really 3 dimensions enough to show on scan.

  • Hi thank you for taking the time to reply to me i dont just get the pains monthly they are constant! i feel like i am going insane at times i am definitely going to speak to my gp and push for a laparoscopy.

    Em x

  • I also had an MRI in November 2013 which came back negative for endometriosis, however after a laparoscopy was done this past January it turned out there were areas of endometriosis that the MRI simply didn't catch. The only way to truly diagnose endometriosis is through a laparoscopy. I agree with one of the previous posts, sometimes GPs wont be up for referring you for a laparoscopy but sometimes it takes a bit more assertiveness to get what you need.

  • Hi thanks for reply I have spoke to GP and pushing forward for a laparascopy :)

  • I also have PCOS. And I was diagnosed with both in 1991 when I had a laparoscopy due to pelvic pain.

    MRI scans will only detect cysts and other large deposits of Endo. My MRI scan in December showed cysts, adhesions (organs stuck together) thickening of uteralsacral ligaments, fluid in POD and adenomyosis + fibroid.

    Definitely push and demand a laparoscopy.

    Barbara x

  • Hi there, you need a laparoscopy. The hospital told me that's the only way they can diagnose Endo. I've not heard of doing an MRI before? Don't let them talk you out of it. You must insist on it. Reading your post is like listening to myself, I have felt crazy for the last six years, loads of stomach, back pain, massively hormonal and really bad pain around ovulation and that time of the month, not being able to get pregnant and being fobbed off by the doctors. I had a lap last month and I have loads of Endo. Good luck with it, keep pushing :-)

  • PS I should also mention that I had so many ultrasound scans over the years that showed nothing, that's why you need to push for the lap x

  • Thank you in all this time I've only had one hospital appointment :( and they are trying to make me have injections to induce a temporary menopause but I don't think I want them as like you we are ttc x

  • If one doctor doesn't agree for a lap keep pushing. It took me 10 years to get diagnosed with Endometriosis and since then i have had to fight for everything. I had major surgery 9 weeks ago as the Endometriosis was widespread and i hadn't had much treatment. At the end of the day you know your own body.

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