I havent been on the pill for a long time. It never helped me in any way, and only gave me more migraines. I would also ovulate on the pill...WTF? And that is also so painful for me.
IDK...I mean its so hard to tell someone its okay to get off the pill when your Dr. is saying you have to stay on. I have so many Dr's tell me I need to be on Lupron or at least he pill or whatever. Its your body, and you know whats best. you have the Dr's info, you know you have endo, so you're well informed. I hate when Dr's tell you, you need to be on the pill or Lupron or Depo or whatever hormone suppressant! I know my body, and it doesnt tolerate any hormonal change, and if its not helping, then why be on it? thats how I see it.
The only thing I can say is I am not on it, and I have stage IV endo. I was on the pill since I was 15; and when they finally found the endo I had deep, stage IV endo, so it didnt help my pain at all and it apparently didnt help too much to suppress growth, though its supposed to. I was getting more migraines and no usefullness out of it, and I had grown an 8cm cyst on Ortho Tri Cyclen (when the pill is supposed to shrink cysts, and I needed surgery, and grew other large cysts that would rupture) so I just stopped. Its been years since ive been on it, and theres no difference with pain at all. For me the pill did nothing, I tried them all!
If the pill is helping your pain and likely suppressing the endo, then maybe not a good idea to stop. I know the pill is standard and basic treatment for endo, and it helps a lot of women. So I dont know. I wish I could give you a concrete decision, but I only have my experience, and I dont think its typical, being on this board seeing how the pill helps so many others with endo.
Good luck. You'll make the right decision for you!

It is your body, your decisions. End of story.

With that said, may I recommend trying a few different pills? I have been on:
Depo provera
Yasmin
Ortho tri cyclen
The patch (ortho evera)
And the ring (nuvaring)

And I am sure I left one out. Each one had different pro's and con's. So try a couple more out. They are all so different, and it is ok to BC shop - even if your doc is giving you a hard time. Tell them it is your way or the highway!

Hugs.

definitely agree on trying different bc pills. i've been on a bunch, and each one has different side effect profiles.

I say try to stick with a pill if your dr thinks that is best. I've been on all kinds of pills. Nine are great for me bc my body is super sensitive to hormones and hormonal changes. Seasonique made me super crazy and moody. I'm now on LoLoestrin and I feel better on it.

I felt the same way, and I went off everything for a year. My doc at the time didn't advise it, but my therapist sure did! My periods were heavier, but its hard to say if the pain was worse, at least right away. I felt emotionally better, and that's what I needed at the time. When the pain consistently became worse, I went back on. I'm not sure if it actually had an effect on my endo because there are so many factors. I think you should evaluate what is most important to you. It will probably take around a month (more?) to get the hormones completely out of your system. I felt I needed a 'break' from the hormones, so I took one. As for the consequences, my endo has progressively become worse while on BC for years at a time, so who knows.

I stopped the pill for the last year (after taking it for two years following a surgery and lupron) because I was so depressed when I was on it. The depression affected my job and social life much more than the pain from endometriosis did. My pain has just started to return though after a year, so I am planning on going to the doctor to see if there is another kind of bc pill that might be better for me. Even with the returning pain I do not regret stopping the bc for a year because it was what I needed for my over all health.

Thanks for the insights! Yeah, I just want to make the right decision. It is also getting very expensive. My doctor won't let me take generic because she thinks it doesn't work as well. (?) Honestly, I think I'm just tired of endo and pill-taking in general and am ready to be done. My dr did mention something about getting insurance to pay for it since it is for a medical issue. Has anyone ever heard of this or had any luck doing this?

Birth control is usually covered by insurance ... brand name and generic. Do you have prescription coverage on your plan?

Or go to planned parenthood or your local health office. I got BC pills from the local health office for like $6 a month for many years. They makes you pay on a sliding scale.

Generic is proven to be just as powerful, she should know this (her words are crazy for a doc to say - sounds like the drug companies are giving her too many free lunches!). Again, your body, your choice. Even if she prescribes a name brand, you can ask for generic from your pharmacist. :-) if a generic is available, they can despense it.

As for insurance, sounds like a great idea, although could be more costly? I don't know. Walmart is another thing to consider, or I have contacts in India who can ship things...