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.

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Does it always come back?

iworry
iworry
Does endo definitely come back? Do we always need to go for a second (or third, or fourth) lap?

I've been thinking a lot about this lately... I was diagnosed and had my first lap at 18, and while I am still young, I know without a doubt that I want to have kids (plural!). I just want to know what to look out for in case it's coming back because I really, really want children and it would be such a shame for my early years of effort to be wasted by not catching new/returning endo.

It's been three years since my lap. I have been having some pain and periods that are beginning to resemble pre-lap symptoms, but I still feel like I can handle it right now, so I don't want to make a big deal over something that doesn't require it. I'm sort of lost right now because my doctor left the practice I was going to and she was just fantastic and now I'm being tossed off to a new one and I feel like I am in a really weird place right now...

What is typical "maintenance" for endo? I mean, I am on BC to only have a few periods a year and some different pain relievers and occasional pelvic floor therapy, but what happens when you feel things declining a little? And what happens when you decide that you want to start trying for a baby? Just curious..
Christine1976
Christine1976
No it doesn't always come back. I know a couple people who had one surgery and have never had any more issues. Of course that doesn't mean their endo didn't return it just means if it did they haven't had any symptoms. For most people it comes back. I'm one of those women who has very little visible endo but extreme pain.
Maintenance is different for everyone. I can't do any type of bc pills....so for the most part I do nothing. I've had issues with heavy bleeding do to cysts not endo so I have had to do stuff for that.
VallyWillis27
VallyWillis27
Endo experts believe that with appropriate excision (not ablation) of the endo the re-occurrence rate is low. The issue is, is that there really aren't that many endo experts out there, so having access to one may not be an option.
The experts seem to believe that endo returns because the root was left behind, allowing it to re-grow.
Christine1976
Christine1976
I don't actually believe that even if it's all removed by the roots it won't come back(my own personal belief!! U don't have to agree with me!!) We all know that it's unknown how endo gets where it is in the first place.....so I believe if it got there once it surely could get there again the way it did at first.
VallyWillis27
VallyWillis27
I guess we can agree to disagree. My opinion is based on research and information written by experts in the field. Though it is true that we don't know how we all got endo, there are some experts that believe that we are born with it. There have been cases of fetuses who have passed and have been found to have endo at autopsy. Which I find to be interesting. Although, this theory to me doesn't explain how males (although very rare) can get it...
Christine1976
Christine1976
Statistics have just come to mean nothing to me.....because my symptoms.......side effects from meds....etc....never fit the "norm".
I just think there are too many variables with this disease for there to ever be any decisive yes and no answers for certain questions. Every single person is different.
(And I didn't mean any disrespect by saying I disagreed. I've done 20+ years of extensive research myself so I don't come to my own thoughts uneducated on the subject. :-) I completely respect your thoughts and opinions!)
lindsayjune
lindsayjune
I have had 2 laps. The second one four years after the first. It has been a year and a half since my second surgery and my pain is now back. It has been absolutely unbearable in the last month. I'm going for an appointment at the end of the month to see what my next course of action will be. It is so bad right now and I am experiencing a new symptom, nausea. This started the last bought of pain I had last month and it is brutal! I was able to manage for a while but I am now feeling like I did before my lap.
iworry
iworry
Thanks for the info, ladies. I worry sometimes about a bit that was left untreated on my ureter.
Christine1976
Christine1976
I had little specks of endo left on my ureters and my urethra for my first three surgeries.....but it was gone when I just had my 4th....even though I still have the symptoms.
deleted_user
deleted_user
I've had two laps in 3 years. Had my second one last week :-/ Recovering has been tough for me. I would like to have another child as well. I told my boyfriend we have two years. I'm 31 and I feel enough is enough, but I haven't given up yet. There are days I want it all to be done. Having great support definitely helps. My Endo did come back; two months after my first lap. He didn't really do much for me. I've been to four different Dr.'s until I found my current one. Having faith in my Dr. has helped me to not give up. Sometimes I feel after all the pain, the meds, the surgeries we go through, it should all go away. But hang in there and don't give up!