If a doctor found endometriosis during any surgery, then yes, you could be having endometriosis issues. Since there is no real cure for the condition except for the actual removal of the implants that not all doctors see or are able to remove, once you have an endo diagnosis, it pretty much goes with you forever unless you can go years and years without symptoms. Have you asked the doctor who was suppose to have found and taken care of endometriosis about it? Have you requested all of your pathology and surgical reports from all of your surgeries? It is possible endo was found and will not be listed on the pathology reports. Sometimes "taking care of it" as the nurse stated to you means that the endo was destroyed, leaving nothing to send to pathology.
Are you keeping a symptom diary? If not, I would suggest you do so. The more information you can track, the better! Then if you do contact a specialist, you can include a copy of your notes for their review. The more information they can look over, the more able a specialist might be to determine--before surgery--that endo could indeed be the culprit or that endo is not the problem at all.
For options, have you tried Lupron? Depo Provera? Some doctors are trying an aromatse inihibitor to treat endometriosis. That could be a non-surgical option for you. Some doctors have their patients with suspected endometriosis try Lupron or Depo Provera because the theory is that if those meds decrease the pain and symptoms, then endo might more likely be the culprit.
The tricky thing about endometriosis (and adhesions since prior surgeries and endo can both set up an environment for adhesions) is that it rarely shows up on any test (though some skilled doctors can use the tests to find it). So to confirm it and remove it, surgery needs to be done. But if you have surgery and none is found, then what? It gets frustrating!
Keep in mind, there are all kinds of issues that can cause chronic pelvic pain. It could take time and trial and error to find out exactly what is causing yours. Hence, my recommendation for a very specific symptom diary. You might even like using
ReliefInsite’s online pain diary.
When I landed in the office of my endo specialist, some of the pain that for years my GYN and I had attributed to endo and/or adhesions, the endo specialist said, "Nope, neither of those! I think you have interstitial cystitis." Honestly, I didn't think he was right! But guess what? He was! By being able to specifically state where the pain was and what it felt like, coupled with all of my other symptoms, he put two and two together and came up with the right diagnosis.
I wish you all the best and hope that you can find out what exactly is causing all of your pain and symptoms! If you can find out for sure what is causing the pain, then you might be able to find a successful treatment plan!
Do I have endometriosis?
