When you say you aren't that bad do yoy mean your pain? If there is a cyst that won't go away, then it should be removed. With endo you just never know until you have surgery.

That's the frustrating part...you never know. Yes, I mean the pain isn't that bad. Before my first lap, I was begging for surgery because I was in so much pain. Now, the pain isn't severe, I just have it frequently. The cyst makes me more open to surgery. It's a 2 cm complex cyst.

Has anyone ever heard of having your uterosacral ligaments removed? That freaks me out.

Ive been there and I had the surgery... 6 of them.

One of the MANY mysteries of endometriosis is the fact that it affects everyone to a different degree...definitely not always BASED on the stage, etc. Unfortunately, no one can tell you which is the "right" decision...only you can make that choice. I am a proactive personality. If only the parade of GYNS that turned me away as the disease progressed had been equally as PRO-active=(

~~Pup

I'm not sure what to say. I have only had a diagnostic lap, none of my endo was removed. I take the pill continual. I can tell you from seeing other girls on other endo support groups, the more surgeries they have, the more problems they seem to get as far as scar tissue, adhesions etc. I'm a fan of leaving well enough alone. If I were you, try the pill continual. I'm not a fan of lupron, I don't quite understand that drug because you can only take it for a short time and then what happens when you can't take it anymore? It's never been an option for me primarily because the pill works so well for me.

@ Shoes, you make a good point BUT everyone case is different. Like I had adhesions before I had my first lap. Sometimes surgery can't be avoided. Yes scar tissue can come from surgery abd endo but each time you have surgery that is cut away. I'm all ffor avoiding surgery if possible but also believe you shouldn't suffer unneccessarily.

My second surgery was my saving grace. I had over 3 yrs of major back pain, but after the second surgery with a trained surgeon...poof!

And I thought my pain was greatly reduced from the 1st surgery! I had no idea how good it would be.

But I didn't take surgery lightly either. I had to have surgery to get preggers. So I understand your apprehension.

Ps who did you see? Always curious about the specialists! And I am so happy you found some to trust...that's awesome. Happy belated thanksgiving hot chocolate.

That's awesome that you were able to see a specialist! Everyone has some good points. Obviously surgery is a big deal and should not be considered lightly. If you gave never had a lap before, I would suggest having it done, since there is no way to know what exactly is going on until he's in there. Keep us posted on what you decide to do!

Thanks for everyone's advice. I'm still thinking about it. Even if I don't get the surgery now, it is nice to know I have a doctor who sees that there is more that can be done if/when I get desperate. The doctor was Dr.Tu in Chicago. I feel comfort in knowing that this is what he does and focuses on. His whole practice is for gynecological pain. He's an endo surgeon.

Shoes...I tried to take the pill continuously and it didn't work for me. I was taking the pill normally for awhile and then it stopped having much of an affect. Glad it works for you! Unfortunately, it doesn't work for everyone.

Whyme123 - absolutely, you're correct, we're all so different, what works for some, causes 10 other problems for others.

Hotchocolate - I also saw Dr. Tu! He's really fantastic, I think you'd be in great hands if you choose to have the surgery. It was Dr. Tu who told me based on my particular situation and the locations of my endo, that it would be super risky for me to have a surgery since my largest endo mass is between my vagina and rectum. I am at very large risk for ending up with a colostomy bag so he said since the pill works so well for me and basically shuts off any pain issues or endo issues I have, it was best to leave things alone although he said he found my case facinating and from a surgeon point of view, would have loved to do a sugery if that makes any sense. There are afew other endo doctors from northwestern that Dr. Tu works with so if anyone needs a referral in the chicago area, check out northwestern in the city or see Dr. Tu.

It's a small world! It's good to hear another good recommendation for him! That's reassuring...also reassuring that he isn't trying to do risky surgeries. So he did a lap on you and didn't remove anything? Do you still go to him? How often do you see him if you're doing well? Do you see him as your normal gyn or do you have a normal gyn you see on the side?

Wait so the surgery makes it worse? I dont want to keep signing up for.surgery that's horse shit (sorry im just angry) I just don't wanna keep going thru surgery that makes it worse ugh

No, he didn't do my surgery. I was diagnosed in 2002 while living in canada. When I got married, also 3 mths after my surgery which was strictly diagnostic along with a hysteroscopy and d&c ( I woke up hemmoraging clots the size of chicken breasts and went to the ER ). Anyways, not sure if the gyno didn't remove anything at the time since I was moving to chicago in less than 3 mths and my wedding was then or what the deal was. I was on the pill continual for many years. We wanted to try for a baby so I went off the pill about 4 years ago and was off for almost 2 years trying. During that time, my pain got increasingly horrible but I kept saying to myself, 1 more month of trying, 1 more. I was having a really hard time peeing during my period, literally I'd lock up and couldn't pee so my regular gyno ( who's been fabulous and was the one who put me on the pill continual ), suggested I see Dr. Tu. I met with him and he reviewed my lap paperwork from 2002, an MRI I had then and also a recent MRI I had to try and figure out the peeing issue. After reading all my stuff he said he was absolutely shocked that I wasn't in crazy pain daily. He also said since when I'm on the pill, I'm 100% and also due to the locations of my largest mass of endo ( which oddly shows up on MRI since it's so huge ) he said for MY case, it's better to leave things alone and just ride this out on the pill until I hit menopause, then I should be fine. I'm not saying surgery is bad, for some, it's required. I think the key is it depends on where your endo is located and what other treatments are working for you. Like I said, for me, I'm totally normal with taking the pill, it's as if I don't have endo. I work out daily, live a totally normal life. Off the pill - another story. The pill has literally saved me, I couldn't be without it. I do also take precautionary measures, I get an internal ultrasound annually to check my ovaries for ovarian cancer since we're at higher risk for that. I also get an annual full body skin check with my dermo since we're also at increased risk for melanoma. I don't drink and have never smoked. I'm also paleo which helps since I don't consume sugar, or grains which are inflammatory foods which contribute to pain issues, kinda a step beyond the endo diet. I just saw alot of members on another board getting multiple lap surgeries and that would create more adhesions which in turn created more pain problems due to having the adhesions. Multiple surgeries also caused them other issues. Again, everyone is different, I'm just commenting on what I have seen with others in another support group. They also kept having periods monthly which I feel in MY opinion, isn't a good thing. I believe that suppressing the period is the best way to handle endo, periods for us are bad, obviously.