I Want To Know If Someone Ever Was Told That They Dont Expect It To Be Severe Endometriosis And Turns Out It Was? | MyEndometriosisTeam

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I Want To Know If Someone Ever Was Told That They Dont Expect It To Be Severe Endometriosis And Turns Out It Was?
A MyEndometriosisTeam Member asked a question 💭

The reason I ask is because I have a laparoscopy surgery coming up next Thurs and basically the surgical scheduler stated that Dr Poston told her that she didn't think it was that serious of endo but I wanted to know was anyone else ever told that and then ended up it was severe enough that surgery took longer? I just don't like being told that when they don't really know and that is why they are doing this

thanks in advance

posted February 24, 2022
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A MyEndometriosisTeam Member

If the doctor is really experienced, there are a lot of ways they can estimate the complexity. Physical exam is one. Complex cases are typically palpable from an internal pelvic exam and external abdominal exam. When scar tissue becomes dense, you can feel it. This is easier to do if a patient is underweight or thin. Complex endo can be missed easily if someone is overweight. MRI/ultrasound can also help indicate severe disease. It is not full proof, but experienced eyes can see indications of complex disease whether they can see actual lesions or they note that anatomy is distorted. MRI has the same issue with detecting complex disease as a physical exam. Fat tissue can hide DIE unfortunately. If there is indication of an endometrioma, there is also a much higher chance of complex disease. Physical exam and MRI/ultrasound are also often not adequate for identifying extra pelvic endometriosis and this needs to be considered in relation to symptoms patients report. Extra pelvic endometriosis is generally more complex because you need additional surgical expertise outside of spec gyno such as bowl or thoracic which are very specialized fields. One of the more rare and difficult to detect complications is when endo involves the ureters or kidney. It essentially is undetectable without laparoscopy and sometimes leads to silent kidney death (aka you don't know anything is wrong until you end up in the hospital). Fortunately this complication is very rare to the overall endo population. Also, i think doctors need to stop using the term 'severe' and instead reference complexity. You can have very severe peritoneal disease, but it is relatively simple to resect and remove leading to a shorter surgery time. Hope that helps.

posted February 24, 2022 (edited)
A MyEndometriosisTeam Member

They really shouldn't say that because they have to activate do the procedure to see how severe your Endo is and what stage you have. Regardless what stage it maybe in it doesn't change the fact that you're in pain,etc... Hope this helps

posted February 24, 2022
A MyEndometriosisTeam Member

❤ It is common to have to have more than one laparoscopy if bowel endo is involved. Unfortunately. You don’t want a gyn resecting your bowl. DIE of the bowl and 'artificial' endo on the bowl can be difficult to detect prior to surgery. It doesn't help that peritoneal disease can cause the same exact bowl symptoms.

posted February 24, 2022
A MyEndometriosisTeam Member

I think they can estimate the amount of endo but they cannot know. So if they suspect endo in places like the wall of your bowl etc they usually work with specialists in this field who can enter the surgery if necessary. My surgery took 2 hours longer than planned. Make sure you have specialized and experienced surgeons so they dont have to do another surgery. It is not recommended as this causes more scar tissue that gets inflammed during periods and hurts. Good luck.

posted February 27, 2022
A MyEndometriosisTeam Member

When I had my laparoscopic procedure, the doctor caused a blood clot.

posted February 24, 2022

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