Did endo come back while you were on continuous contraceptives?
Hello all, this is my first post here. I am 46 years old and was diagnosed with severe endometriosis eight years ago via laparoscopy. Lesions and adhesions were extensive and were excised. Afterwards I was able to get pregnant with my son and breastfed him for several years, which meant I was not on the pill at that time. I have now been on continuous contraceptives for almost 3 years straight. I’m now starting to have endo symptoms again (bloating, pain, changes to bowel habits) and am seeing the doctor next week. I am totally open to having a second laparoscopy, but my fear is that it won’t just be endo, but something worse. My question is, has anyone here had their endo come back while on continuous contraceptive use?
firstly, just wanted to welcome you to the community. We are happy to have you here and hope that you know, you can always reach out to us. We are here to chat anytime and do our best to answer questions.
It sounds like you sure have been on a long journey but so glad your lap you had, seemed to help for a while. The unfortunate thing is endometriosis can and will most likely grow back. For some, it can take months, for some it could take years, for some they may not see it grow back badly or for a very long time.
For me, endo seems to come back badly every two years. I am no longer on the pill because I felt it was causing me more issues rather than helping, but even on the pill, I still did see a lot of endometriosis symptoms. Right now, I too am having that bloating, pain and bowel changes. It is so frustrating and exhausting. I am sorry you are experiencing this all too. And I know the fear of, oh no is something more going on?
May I ask, is your doctor an endometriosis specialist? I think it is great you are seeing your doctor again and hopefully they can help you find relief and answers 🙁 Sending you the biggest of hugs. -Kimberli (advocate)Hi Kimberli, thanks so much for your kind words of support. I don’t know anyone else with endometriosis and speaking with someone who understands is comforting. I am just seeing my regular gyno next week and I’m sure that she will refer me…I don’t believe that she performs laparoscopies and I will be firmly advocating for a second one. It’s been 8 years so I beat the odds thus far from what I’ve seen statistically. My symptoms started two weeks ago and I feel that they are getting worse each day. Have your recurrences been like that?
Maven Welcome to the community! We’re so glad you’re here! Kimberli gave you some great answers, and I’ll add my experiences. I am 41 and haven’t been on hormonal birth control (HBC) for 12 years. That’s because my cysts and endo lesions came back after my 1st and 2nd surgery, while I was on continuous hormones (the NuvaRing). I decided to go off of HBC because they never helped ease my symptoms and I couldn’t tolerate the side effects.
There’s not a lot of evidence to support that continuous birth control can prevent the return of endo. And it certainly doesn’t treat it or get rid of it. My symptoms got a lot worse about 5 years after my 2nd surgery. Along with period pain, issues of bloating and changes in bowel habits were a huge problem for me. I first worked with a GI doctor and he helped me figure out my trigger foods — which are high FODMAP foods and gluten. That helped TREMENDOUSLY. But I had other symptoms that weren’t relieved by diet changes and I pushed for a 3rd lap and had an excision surgery in 2021.
I, too, was really afraid that I had something much worse than endo. I could hardly eat and was in pain all the time. The surgeon excised scar tissue and only one spot of endometriosis under my uterus. Because of my pain, I was sure he’d find endo everywhere. But nope. He even said my ovaries and fallopian tubes were “free and clear.” My appendix, which I had removed, also didn’t have any endo. (My pain is worst on the lower right side).
But like Kimberli says, my symptoms tend to come back every couple of years post surgery. And I’m having bloating, changes in bowel habits, etc. I think it’s always a good idea to go over these symptoms with an endometriosis specialist. And I plan to see a new doctor in a few weeks about treatment going forward. I hope you find someone who’ll help give you some peace of mind while you look for answers! Wishing you well! - Keri (endometriosis.net team member)
