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My experience

So I’ve recently got diagnosed with endometriosis, adhesions all over my abdomen and two large cysts on each of my tubes. It took months to get a diagnosis. In total, I had two hospitalizations, three rounds of antibiotics and two procedures. The last procedure they couldn’t even do anything because everything was so bad and inflamed. And now my doctor is saying that while the cysts are going down in size, my left tube is looking like it may be infertile and might have to be taken out eventually. I guess I’m wondering how does everyone deal with stress like this all the time? And deal with the chronic pain with no end in site? I’m only 21 years old and didn’t think anything was wrong for the longest time… my gyno said “I just had bad periods”…

  1. firstly, just want you to know you are not alone. SO many of us here can relate to you, you are in the right spot for love, support and guidance! Second, we are so saddened and sorry to hear of your struggles. Endometriosis is no joke and takes a huge toll on us physically, mentally and emotionally. It definitely sounds like you have a lot going on. And while I know we are happy to have answers after years of being told it was all in our head or just our periods, it still stinks trying to deal with it all.


    Can I first ask, is your doctor an endometriosis specialist? If not, I would recommend a second answer before the removal of your tube. I was told this in my first surgery by a GYN. Then my second surgery was done by a specialist, and they were actually able to unblock and clean out my tube and save it. I know this isn't the case for everyone, but it is worth a second opinion first if you haven't gotten one yet. Nancy's Nook, a FB group, is a place you can join to see a list of endometriosis specialists that you can search for in your specific area or surrounding areas.


    As far as managing the stress and pains, I won't lie, it can be hard at times for sure. I have recently started therapy to help manage that stress and just anxiety/sadness I have been feeling over this illness. Talking with someone really helps just work out and get out all my feelings and what I am feeling and giving me ways to cope better with them. I also found for pain management, now this doesn't help 100%, but it has helped a little and I will take it but changing my diet. Really leaving out any foods that cause inflammation or any foods I seem to have an intolerance too. Also, smaller things that I use on those really bad pain days, a TENS unit, CBD, a weighted blanket, heating pad/ice pack and sometimes certain supplements (recommend talking with a doctor before starting or using any supplements though).


    I hope this was a little helpful and that you are able to find some relief <3 Please, reach out to us anytime you have questions or just need to talk. We are here for you. Sending you big hugs, love and all the good thoughts I can. -Kimberli (advocate)

    1. Thank you, I just found this website last night and I already feel less alone. And yes my doctor is a endometriosis specialist, and recommended I see an infertility specialist as well

      1. well you are so right, you are not alone! I am glad you have an endometriosis specialist. That is great. If they are recommending to see an infertility specialist, and you feel comfortable doing so, it may not hurt to do it. I am all for other opinions and options! I hope you do get the answers you are looking for and start finding relief <3 -Kimberli (endometriosis.net advocate)

      1. Welcome to the community! These are some great questions. I’m 41 now, but I still remember what it was like trying to seek answers and to learn about endo 20 years ago. It can feel overwhelming, but getting a diagnosis (for me) was one of the biggest hurdles. For stress, the first thing I’ll suggest, on top of chatting with your fellow endo warriors 😊, is finding a behavioral health therapist or psychologist who works with people who have a chronic illness. I’ve seen two different therapists who specialize in cognitive behavioral therapy (CBT) over the pandemic and they’ve been great.


        Here are two articles on the mental health that might be helpful: https://endometriosis.net/living/cognitive-behavioral-therapy; https://endometriosis.net/living/managing-mental-health.


        The second thing is to take things one day at a time. Endo can be unpredictable. But for me, that means I also have days where I feel pretty good. I’ve also learned a lot about how to manage my symptoms over the past 20 years that help me day-to-day (https://endometriosis.net/living/symptoms-experiences).Please reach out if you’d like some guidance on any particular issues. We’ll do our best to point you in the right direction! - Keri (endometriosis.net team member)

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