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Want answers but worried about surgery

I'm 23 years old and have not officially been diagnosed with Endo. My OB is an endo specalist and says the only way to truly diagnose it is with surgery, but he didn't want to do the surgery because I was so young (I was 20 at the time). I have been on Nexplanon since then with minimal flare ups, but now that we are getting closer to when I have to renew the implant, my flare ups have been getting worse. Are there other methods of testing/ imaging that can help us find out if its endo before surgery? I was wondering if I should ask about an MRI when I go see my OB in October for my Nexplanon renewal.

  1. Hello EDhorserider,

    i recently had the diagnostic procedure and i recommend going through with it. if you don't mind me asking, what specifically are you concerned about?

    From what i've experienced, a trans vaginal sonogram can reveal some details which are consistent with endo diagnoses, but only with surgery can those be confirmed.

    1. Been doing well, thanks! Still recovering, but each day is getting better. The hardest part is trying not to overwork myself 😀

    2. I understand trying not to overwork or over do it! We are so happy to hear you are doing well though @afinardo! <3 -Kimberli (Team Member)

  2. Thanks for reaching out @Dhorserider. I'm sorry to hear your flare-ups have worsened, that must be so frustrating.

    While an MRI can show signs of endometriosis, the truth is that imaging tests may sometimes fail at diagnosing the disease. Some endometriosis adhesions can occur at deeper levels, or hide behind organs, which is why a laparoscopy (surgery) is, currently, the only way to diagnose the disease for certain. I hope this helps.

    Do let us know if you have further questions or doubts and we will try to help you out as best we can 😀 – Jessie (team member)

    1. Hi there . I can understand your concerns. Those were all things I was concerned about as well. It's a big decision, one we truly have to decide for ourselves. For me, I was in so much pain and dealing with a lot of doctors telling me it was in my head, that I knew surgery was going to be the best route. I needed that answer that I actually did have endometriosis. It is very rare for scans of any kind to show or confirm endometriosis. Like Jessie said, sometimes a scan can show something that may confirm the possibility but surgery is truly the only definite way to get a proper diagnosis and know for sure.

      Please know we are here for you. So do reach out with any more questions or if you just need to chat <3 -Kimberli (Team Member)

      1. Also, going along with Kimberli's comment about people telling you, "It's all in your head," i can firmly agree with that. I went from primary care doctor to GI specialist, to allergist and no one wanted to help and refused to diagnose me with anything other than IBS.

        It's important for you to know that your pain is real, your concerns are valid, and your voice can be heard by doctors. There are doctors out there that want to help you and relieve you of your daily struggles. As members of the endo community, I hope we can all create a voice to make endo less taboo and raise awareness for women out there who are suffering in silence.

      2. , gosh yes! Went through so many different specialists all to tell me the same thing, I was fine, they are stumped, I need therapy, it's in my head, it's just gas, and the list goes on! But agree with your words so much! All though there are many doctors out there who seem to push us to the side, there are still many doctors out there who do care. We just have to push and fight to find them! Thank you so much for your words. Hopefully the more we keep raising our voices, the more less taboo endometriosis will be, like you said! -Kimberli (Team Member)

    2. Update: Just went to see my OB. We talked about different imaging and how since the ultrasounds don't seem to show anything, that it would probably be the same story with other tests. We discussed replacing the nexplanon more often, every two-two and a half years instead of every three, since that last few months of the third year are when the flare ups are worst. He reiterated that surgery would be the only definitive diagnosis since the imaging just hasn't caught up, yet he is hesitant to put me through an "unnecessary anesthesia/surgical event" if I am responding well to other treatments. Not sure where to go from here...

      1. I found that weird too. I might look into getting a second opinion (5th opinion?? lol). He also said that it sometimes just goes away on its own and that it can improve if I get pregnant. I don't really want kids right now, which I told him and he said "Oh you have plenty of time to decide that." But, I'm glad that you are already feeling better after your surgery! Hope you have a quick recovery!

      2. , definitely go and get another opinion if you can. It makes me cringe when they use the "get pregnant" line to help with symptoms and pain. For some women, being pregnant helps for the time being pregnant but then comes back right after. So it definitely should not be used as a form or type of treatment! Excision surgery is the gold standard! I would look into seeing an endometriosis specialist and see what they have to say! Search on Nancy's Nook- a FB group- to see if there is one in your specific location or surrounding area!

        And do know, you are not alone <3 I know doctors and family can make us feel crazy like we are making it up, but it is very really. Only you know your body and know that something is not right. Keep fighting for answers and proper treatment! Hugs. Reach out to us any time! -Kimberli (Team Member)

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