Endometriosis UK
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Diagnosis confusion


I had a laparoscopy last year and was told that no endo was found but that I did have adhesions, which were dealt with. Since then the pain and discomfort has returned and have had further tests and investigations, mostly around potential bowel problems, but with the mention that the adhesions could have come back to increase the pain. I went to a gasto specialist recently and in the letter to follow up it mentions that I had a diagnosis of endometriosis and adhesions which he believes is causing my problems more so than the ibs (which he states I am managing well), but I'm confused - do I have endo or not? I don't think it could be likely that I was told one thing for the last year and he's read something else into it, but what if I had been told wrong all along? I have a GP appointment next week so will ask about this, and am tempted to ask to see my records regarding the lap, but I wondered if anyone else has had a similar experience of differences of opinion in diagnosis like this?

Thank you!

2 Replies

Hi - you definitely need to look at the report from the lap. Normally if you apply for a copy you have to pay a fee and wait for the copy to be sent which must be done within 20 days, but as you are seeing your GP I should ask him/her to call it up on the computer (have the exact date of your op in mind) and ask if they can print it off for you. I should take a pen and paper with you in case they won't give you a copy so you can just write down what it says.

IBS is the most common misdiagnosis for endo when it should be one of the strongest indicators. One of the most common areas for endo is a place between the back of the vagina/cervix and the rectum called the Pouch of Douglas or cul de sac, but this is also one of the most commonly missed areas in general gynaecology as they usually concentrate on the reproductive organs. As this is very close to the bowel the inflammatory toxins given off by endo irritate the bowel and cause IBS symptoms. The Pouch of Douglas can become full of adhesions but there will often be endo deep beneath that can't be seen at a lap. You don't say what your symptoms are but apart from bowel problems and general pelvic pain, endo here can cause symptoms such as low back pain, pain on or after sex, stabbing pains up the vagina or rectum and referred pain down the legs.

Regardless of what the report says, in view of the presence of adhesions with pain and bowel symptoms I suggest that you request a referral to a specialist endo centre for a second opinion. You should refuse referral to another general gynae as you don't want endo missing again if you have it there.

Click on my name and have a look at my post on POD endo and on how to find a specialist. I should print off the BSGE list of specialists to show your GP and ensure that they know that suspected endo affecting the bowel must only be dealt with in such a centre. x

1 like

Thank you, that is so helpful, I will see what they say at my appointment about having copies, they seem a good surgery so fingers crossed! Thank you also for the info on specialists, I'll take a look at that too.


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