Long term

[help1986]

Hi I was wondering what the long term solution is with living with endo? Im on 27 so have a lot of years ahead of me and would like to know whats ahead! I havnt had much luck when asking doctors, very vague....

[stinaa022]

I believe there isn't much to cure maybe a few different drugs and laparoscopies to help but unfortunately were in it for the long haul...I'm 20 and also got ALOT of years to deal with this xx

[KathleenLucich]

And what you have to deal with from my experience, really depends on the doctor. Those who have gotten the right treatment from the right doctor have gone for many years without a recurrence, or at least enough that they ever have to do anything about it (In one endo surgeon's survey of his patients 10 years after surgery, 55% of the respondents had a greater than 90% resolution of symptoms for 10 years, 66% were 75% better.)

Unfortunately, not enough doctors have the skills or training like he does, so many women are "mistreated." Endometriosis should be a specialty. It is not something your standard gynecologist really knows how to treat. But we're hoping to change that. Until then, choose your doctor carefully. And this may be why you're not getting answers. Perhaps the doctors you're talking to don't have enough info because they really aren't qualified to treat it. I don't know. You'll have to quiz them and check references to find out.

The other things that need to be changed, in the United States at least, are the insurance companies. They typically won't cover the type of treatment that is necessary for stage 3 or 4 endo. They force women into treatments that just don't work. The trick here is to get proper care from a real specialist in the early stages so you never have to deal with that. Again, choose your doctor carefully, and if you do, things may really not be as bad as they seem.

And you ask what's ahead. I would venture to guess that awareness will grow and doctors will get special training so that more women throughout the world will be able to benefit from better treatments. There are some real fighters in my neck of the woods who are working on that and they have clout. I can honestly say your future is brighter than it was yesterday.

Big hug to you.

[boudy14]

What an amazing concise answer Its so good to hear the help this site provides

[little_fins]

Hi. I'm also 27 and only got diagnosed following a lap last year after complaining since the age of 13 of pains! I have had surgery now where a lump of endo was removed last week and fingers crossed my surgeon seems positive it won't come back. I was lucky. I was told about my surgeon by a friend who's ex had severe endo and my gynaecologist luckily referred me to him. He is a specialist and does research into endo so these guys are out there. Good luck