Does endometriosis always show up on a laparoscopy?
I had my lap done yesterday. Three docs I went to presumed endometriosis. One did a physical and an internal exam, felt scar tissue, did a smear. The second did the same but had to stop my smear as it was too painful. The third was my doctor who reviewed my notes from both gynaecologists and said it was looking like endometriosis. Then I went back to the gynaecologists and was seen by a third doctor there ( a general gynaecologist surgeon). She did a transvaginal scan and agreed to a laparoscopy investigation, as requested by my doc.
In the lap they found polps in my womb and a fallopian tube that wasn't functioning. Does this mean I don't have endo? Did anyone experience anything similar? It's confusing because my symptoms correlate with that of endometriosis. Thank you for your help!
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Poppy2023
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Thanks for your message, and I can understand how confusing this must be for you. As far as I understand the only definitive way to diagnose endometriosis is by a laparoscopy. I think if you are able to go back to who did your lap and get some confirmation on what they found etc then that could be useful to you.
This is incorrect and it is worrying that a moderator says this. For obvious reasons retroperitoneal endo won't show at a diagnostic lap and neither will the depth of any disease that is visible. Endo UK must be aware of the new ESHRE guidelines that confirm that a diagnostic lap is no longer the gold standard for diagnosis and the first course must now be a scan. If there are symptoms of severe disease and/or nodules felt on clinical exam the scan (TUS or MRI) should be done by a radiologist with advanced skills in detecting endo. When seen on scans this is a confirmed diagnosis and avoids an unnecessary diagnostic lap so that detailed and essential pelvic mapping can be carried out prior to a well planned excision by a multidisciplinary team.
Thanks for your comments. The new ESHRE guideline makes some changes in relation to recommendations on diagnosing endometriosis. The relevant recommendations are:
Recommendation 5: “Clinicians are recommended to use imaging (US or MRI) in the diagnostic work-up for endometriosis, but they need to be aware that a negative finding does not exclude endometriosis, particularly superficial peritoneal disease.” (Strong Recommendation)
Recommendation 6: “In patients with negative imaging results or where empirical treatment was unsuccessful or inappropriate, the GDG recommends that clinicians consider offering laparoscopy for the diagnosis and treatment of suspected endometriosis.”
Further information about the EHSRE guideline on endometriosis can be found here.
The relevant change in the new ESHRE guideline is:
Page 7: 'Changes in the current version
Diagnosis of endometriosis
Laparoscopy is no longer the diagnostic gold standard and it is now only recommended in patients with negative imaging results and/or where empirical treatment was unsuccessful or inappropriate.'
'Diagnosis of certain presentations of endometriosis for example ovarian endometrioma and deep disease by ultrasound or MRI can be considered without laparoscopy and histological confirmation'
In your reply to the post you said:
'As far as I understand the only definitive way to diagnose endometriosis is by a laparoscopy.'
The above statements confirm this is incorrect.
Underneath the recommendations you have stated above, the ESHRE guideline adds as justification:
'Taking the factors discussed by Wykes et al. and available data into account, it is likely that particularly dedicated transvaginal ultrasound in experienced hands but also MRI can replace surgery are the gold standard for the diagnosis of ovarian endometriosis cysts and deep endometriosis in the pelvis. Laparoscopic identification of endometriotic lesions with histological verification has been described as the diagnostic gold standard in the past. (Kennedy, et al., 2005) (Dunselman, et al., 2014). However, advances in the quality and availability of imaging modalities for some forms of endometriosis on the one hand and the operative risk, limited access to highly qualified surgeons and financial implications on the other, call for the urgent need for a refinement of this outdated dogma. Furthermore, development of novel and improvement of existing non-invasive methods to reliably detect or exclude endometriosis is of paramount importance'
The new ESHRE guideline clearly emphasises the use of imaging for diagnosis and refers to the diagnostic lap as 'outdated dogma'. For the benefit of your members wouldn't it be best to accept that you gave incorrect information?
My first exploratory laparoscopy the doctors told me nothing was there and I must have a low threshold for pain. I went back to my GP and asked for a second opinion at a different hospital and sure enough the second lap showed I had three areas of endo scar tissue. My advice is, one lap is not definitive and doctors are still human beings at the end of the day and they make mistakes.
In answer to your question, no endometriosis doesn't always show on a lap.
A lap looks inside the peritoneal cavity. This is all enclosed by the pelvic lining (the peritoneum) which is a thin membrane that lines the cavity and wraps itself round the organs inside.
Even the experts don't fully know yet how endo originates but there are 3 different forms that have been identified:
1) Peritoneal endo that attaches to the peritoneal lining and grows into it. Because this is on the peritoneum it is visible at a lap.
2) Ovarian endo in the form of 'endometriomas', also called chocolate cysts. These are visible at a lap.
3) Deep infiltrating endo which is when the endo has infiltrated beneath the peritoneum or has originated beneath it. Sometimes this can be seen at a lap , sometimes it can't.
Even when talking of what can and can't be seen at a lap it very much depends on the skills and training of the surgeon. The NICE guideline and NHS require that only gynaecologists with expertise (a special interest) in diagnosing endo should conduct a lap. A thorough systematic inspection of the pelvis should be conducted by 2 surgeons working together. The uterus must be lifted to look behind where endo is most usually located in what is called the pouch of Douglas and on the ligaments in that area. But many general gynaecologists just go in and have a quick look at the uterus and ovaries and don't look elsewhere, especially deep behind the organs. So even if endo could have been seen at a lap it is often missed by unskilled surgeons.
Endo deep behind the cervix and on the ligaments (uterosacral ligaments) can often be felt when doing an internal exam. This would be felt as nodules of scar tissue. However, this can be missed by general gynaecologists when doing a lap and it is important that they carry out a thorough internal while you are asleep. This is called rectovaginal endo and can be seen by scans, especially ultrasound, but it must be done by an expert in looking for deep endo and not just a regular sonographer as they don't have the training.
Typical symptoms would be pain with internal exams, pain with sex, lower back pain, sometimes leg pain (especially the left), sometimes pain with walking/sitting, shooting pains, bowel issues as well as the usual general pelvic pain.
It would be useful to get a copy of both the lap report and the ultrasound. Feel free to massage.
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How long did it take for your laparoscopy/diagnosis of endometriosis?
Does endo show up on MRI?
Endometriosis- anyone had the same symptoms come back a few months after laparoscopy?
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