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What are some tips for managing endo pain?!

I am in severe pain quite frequently. I am prescribed and taking MyFembree but doesn’t even touch the pain. The next step is surgery to look for it but I really don’t want to have to have surgery for them to prove I have something I’ve already been told I have.I’ve been in debilitating pain for over a decade and have had many hospitalizations for this issue.

Tips?!? Advice? Anything helps.

  1. Hi . I wish you were not in so much pain. Here is an article about pain management options you might find helpful: https://endometriosis.net/living/pain-management. I hope you find something in the article that helps. Have you talked with your doctor about the purpose of the surgery? Without performing a laparoscopy, doctors can't be 100 percent sure that you have endometriosis. That's because endometrial tissue can be hard to identify in ultrasounds, MRIs and CAT scans. So, yes, laparoscopy is a tool for definitively diagnosing endometriosis. Still, not everyone needs to have laparoscopy or wants to go through with it, especially if treatments are helping.
    There are benefits beyond diagnosis, however. Laparoscopy can also help doctors determine whether endometrial tissue is attached to organs or breaking through organ walls, making your pain worse. They can also remove much of the endometrial tissue during the surgery, which can bring relief, at least for a while. The problem is that it's not a cure. The tissue eventually grows back, possibly leading to more surgery.
    I can see why it's a tough decision. My daughter had laparoscopy three years ago at 20 years old after she landed in the ER with severe pain. She is now on hormone treatments and is mostly comfortable, but I'm sure she'll need it again someday unless we find a cure or better techniques for managing it. Her recovery from laparoscopy was fairly easy and she is glad she did it, but others are not so lucky. Either the pain isn't relieved or it returns quickly.
    It's a very personal and individual decision. I hope you get more responses here and that you eventually find relief. Please keep us posted. I'll be thinking of you. - Lori (Team Member)

    1. Hi Kimber1995! I hope you were able to get some pain relief and answers. I’m gonna throw in my 2 cents since being diagnosed in 2020 after laparoscopy. I’m glad I had the surgery, but make sure they excise any endometriosis that they find instead of cauterizing it like my surgeon did. I’m afraid my endo has grown back, but this time if I have to go for surgery, I’m going to go to an endometriosis specialist. I have had symptoms suggesting the endo grew back since 2022.

      6 months ago, I went on a whole foods, low carb, ketogenic lifestyle. The severity of my symptoms has decreased significantly (minus a flare up here and there) and I dropped a decent amount of weight. This type of lifestyle limits all sugars/carbohydrates which cause a ton of inflammation. Since inflammation is a symptom of endometriosis, I gave this lifestyle a shot since I got to a point where I had nothing else to lose. A TENS machine, heating pad and pain killers helped manage my pain during those pesky visits from Aunt Flo. I find now that those monthly visits are a bit more bearable and not just barely managed with those three things and the ketogenic lifestyle.

      I hope this helps, but even more I hope you find relief.

      1. Slinda is the only way for me to manage the lain as I don't have a period. I skip thr sugar pills (green). Its relatively new to the market and I've told others who have started to use with great success too. I couldn't keep going for more surgery. Mirena is not the answer and was an absolute waste of time.

        1. Metoo

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