Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Trust me I am NOT complaining nor am I pregnant (Got a blood test from doc!). But I got off my pill a little over a month ago and no period? This is NOT a bad thing as I had been previously been bleeding EVERYDAY for a year and a half! And I have no pain. So is a missing period normal? And what do you guys think if I have ZERO pain after going off the pill? I'm just totally confused!
Honestly you need to start doing a little research (actual research. From the sites that have been provided to you on a couple occasions, like endopaedia and the CEC website among others.). Surgery with a true specialist can prevent multiple surgeries and continued pain. But really at this point you don't even know if you have endo yet since you have not been officially diagnosed. The only way to deal with something properly is to know exactly what is going on and you know the only way to do that is through surgery.
The fact that people quote multiple surgeries likely has a lot to do with the lack of access to a doctor who is truly skilled in the removal of disease through excision (not ablation, which has a high failure rate). Even when excision is performed, if the surgeon is not very skilled (especially when the disease is complex) this can allow the disease to return or in a more likely scenario, to be missed. Lack of access to care is a problem many of us endo sufferers face, which is why many of us continue to suffer (myself included)
This has been said to you several times before, but it is in your best interest to find a doctor who is truly skilled, especially once you are officially diagnosed. This is why I suggest you do some research and through sites that a written/run by experts in the field (like Dr Koh, Cook, Sinervo, Redwine, just to name a few).
Honestly I find it frustrating that you have been on this site for almost a year and continue put off surgery and ask the same questions over and over. I am very sorry if this post comes off as rude, but I have some serious issues with supporting someone who isn't willing to take the steps to help themselves.
When I found out I had endo (through surgical diagnosis) I did everything I could to find out about my disease. I joined support sites asked for info, but didn't stop there, I have spent many, many many hours doing research on my own to figure out the best approach for my case. This is what several of us have suggested to you several times, but Im not sure you have taken this advice.
It is nice to get info and feed back from others who are going through the same thing. But with a disease like endo (which is one that is extremely misunderstood and backed by many schools of thought) you need to dig deeper. You can't base you outcome on a couple people saying they were worse after surgery. There are many people who have had success when in the hands of the right doctor. I have seen many women post on other sites about having remission in pain without numerous surgeries because they were seen by the right doctor. So please don't make generalizations about all cases leading to continues pain or worse pain and further surgeries. Does it happen, yes, does this have to happen to you... no, will it happen to you, not necessarily.
Obviously having surgery is your choice, but I think at this point you either do or don't, end of conversation.
I personally don't really care what you end up doing, have surgery, don't have surgery, makes no difference to me. My issue is that you ask the same questions over and over. Really what you should do at this point is research the disease using reputable sources, like I already said.
No one can tell you what you out come will be. We have no idea if your pain will become worse, or if it will come back after several periods. NO ONE KNOWS THAT. The best thing you can do is equip your self with info and make the best decision for yourself. Once you make that decision let it be and move on. There is no telling how something will turn out until it happens. This is a very individualized disease so it isn't fair to make "blanket statements" about how everyone is worse off after surgery. Outcomes depend on the patient and the skill of your doctor.
I would also like to point out that you can't say you have endo until you have a diagnosis. You can think you have endo, but that isn't a certainty. If you don't want to find out for a fact if you have something that is your choice, but again, after the decision is made maybe it is time to move on and let it go until you change your mind.