have to wait till surg to know?

Hi, I just went for my pre-op and the surgion said 1 cyst on ovary, calcification on other 1 fibroid and a lot of shadows on my uterus. Of course I an have a LASODH? davincci, laporascopic, removing one maybe both ovaries. Anyway, after having this discussion she informed me none of these things would be causing my heavy bleeding, clots, and severe pain. She said she thought it could be endometriosis. It seems strange now that when I mentioned to my reg. doc. and asked if this surg would help with the pain in my upper thigh, he said no it must be something else. Now I see here other women with endo also have this pain. What a roller coaster it has been. So many docs so many of them telling me to just take a laxative.ugh. Sorry rambling. My surgion said that she won't know untill she gets in there if I do have endo. Is that right? She said that she will begin davincci but if I have a lot of endo. she will have to go in abdominially. My ca125 is 9 go me!! I am concerned about endo though. If she removes everything including the endo what are the odds of it comming back?
I seem to be all over this site, but with everything so up in the air I am getting concerned. Besides the fact that my blood pressure is up ( I always have a good read) I think well of course it is I'm trying to act like no big deal while im in so much pain and worried!!!!!
I have had my period for about 6 years now with only days between cycles. Large clots and the pain just gets worse and worse. I hope this is it after having to listen to numerous docs tell me I am just in menapause and take a laxative. I am so sorry for rambling but boy the medical community can be a pain!!!
So my question is do they never know if you have endometriosis untill they go in?

Endometriosis usually doesn't show up on MRI or ultrasounds, and although it can sometimes elevate a CA125, it doesn't always do so. The only positive way to diagnose it is by seeing it visually, either by laparoscope, or directly when the surgeon is looking inside. I would ask a lot of questions about how she plans to remove the endo if she finds it. A hysterectomy will not cure endometriosis. Also there are different ways to "remove" the endo, and several of them don't actually get rid of it. Endo implants can be like little iceburgs embedded in your normal tissue--if only the tops of them are burned or lasered off, the remaining part of the implant has the potential to start causing problems all over again. Excision surgery gives the best chance of getting all the endo. That is, the implants are totally removed. Endo specialists are unusually adept at identifying the implants in all their colors, sizes and forms.
It's great that you're asking lots of questions. I can understand how terrifying it would be to be going through this whole process not knowing what situation you will wake up with in the recovery room. Have you gotten a second opinion? That is something that can bring a lot a peace and clarity when it comes to making a final decision.
I'm sending hugs and praying for your strength in dealing with this difficult process.

I'm all for second and even third opinions. And yes, from what I understand going in for a look is the only true way to dx endo.

Best of luck to you!

Generally yes, the only way to 100% diagnose endometriosis is after a surgery and pathology. Many of us have an exploratory laparoscopy to determine exactly what is going on with our bodies and that is when the endometrioss is officially diagnosed. Some of us have doctors who do clean up the endo during the lap and others wait until a future surgery.

Not all GYN surgeons have the ability to completely remove endometriosis and depending on the surgeon's skill and your body your chances of recurrence can vary. Even the best of the best endo surgeons still have some patients who end up with endometriosis recurrence. Thus it is very wise to seek at least a second opinion, consult with an endometriosis specialist if at all possible, and definitely weigh all of your pros and cons. Since there is no cure for endometriosis it is essential that we each do our best to do what is right for us specifically, knowing that we are doing what we feel is best but that also being aware that down the road there may be some issues.

I had my first lap and hysterectomy with my local GYN and he did an excellent job, confirmed later by my endometriosis specialist. However, he did leave behind some endo around the bowels as the risk of removing it was too high. For my last surgery I did have an endometriosis specialist so he could remove that bit of endo as well as any other endo that had surfaced and he also did lysis of adhesions. Time will tell if endo will ever be a problem for me again!

Do your homework. Do your research -- you can start by reading through the Endometriosis Resources. Talk to your doctors. Then do what is best for you! S