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Maybe Endo…?

Hi everyone. I’m so grateful for this forum!

I’m 37 years old and have a 15 month old. When I was 35 I had a myomectomy and they removed a small amount of endometriosis (first time I heard I had Endo). I went on to have a baby then went on birth control shortly after. Three months ago I went off birth control to ttc, but started experiencing lower ab pain, bloating (like crazy), constipation, diarrhea, Lower back pain, leg pain, etc. it only lasted 2 days the first month. The second month I felt no pain, but the 3rd month it lasted a week during ovulation. Not to mention I was super hormonal when I got off birth control.

My Gyn did an ultrasound and found what could be endometriosis or endometrium, but he was kind of confused because it looked like it was not inside my uterus, but could be attached. I have an MRI schedule for late Feb. I’m a little nervous because I’ve never dealt with this before. Any advice would be helpful.

Thank you again!

  1. Hi , I'm so glad you've found the community here! It sounds like you have a lot going on! For sure it can be normal to feel a lot of hormonal changes when you stop taking birth control pills, and it can take some time for your body to readjust to being on its own schedule. Not knowing what is causing this mystery area on the ultrasound is hard, especially when you are hoping to get pregnant. Maybe it's another myoma? Hopefully the MRI will bring some clarity so that you and your GYN can make a plan. Take good care of yourself and please let us know how things are going for you! Sending best wishes! -Audrey ( team)

    1. Hi Mellisa,

      Sending good wishes that you'll get some answers from the MRI. I'm glad to hear you're doing that because MRIs can certainly provide more answers, even though they can be nerve-wracking. If you are anxious about the MRI, you can ask your doc to prescribe anxiety meds to take before the procedure. You'll just need someone to drive you there and drive you home if you do that. At my hospital I was able to wear headphones and listen to music during the MRI (they provided the headphones and were connected to Spotify). You might want to inquire if that's an option where you're going. It helped me because I get claustrophobic.

      When I had an MRI before my surgery in 2020, they discovered that I had adhesions that were connecting my uterus to my rectum. So it's possible adhesions are involved somehow with what you've got going on. I'll be thinking good thoughts for you. Please keep us posted on how things go. ~Katrina, Advocate

      1. Thank you so much to both of you for your advice. It’s so appreciated and gives me much relief. Since my myomectomy (they sent me to an oncologist because they weren’t sure what the “mass” was) I’ve had quite a bit of anxiety when visiting the doctors and waiting for test results. Im not super scared of it being endo, but I have an unreasonable fear of cancer. I have zero history of cancer, but still a fear. Although my GYN showed me the ultrasound and why it’s not cancer, but still I have fear. 😣

        1. I don't think it is unreasonable at all to be afraid that this could be cancer. Not knowing leaves us open to making up all kinds of stories. I think it's just your brain trying to keep you safe. So until you get some clear answers and a plan, it may be hard at times. It sounds like your GYN is taking this seriously, so that reassures me. Take really good care of yourself while you are in this waiting and worrying mode, and please let us know how things are going for you. Hugs! -Audrey ( team)

        2. As someone who struggles with anxiety and also has a fear of cancer, I understand this well. When I get into situations like this I do my best to focus on what I do know for sure and try not to dwell on things that I don't know or things that might happen. Staying as present as possible. I know that this is absolutely easier said than done, but perhaps it will help you get through the month with less stress. ~Katrina, Advocate

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