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Having an excision lap and doubting myself.

Hello everyone. I've been trying to find an endometriosis community and came across this one here. I'm 25 and I was diagnosed with endometriosis via lap in 2018. This is my second surgery and I'm starting to doubt myself and my pain.

I have a history of medical professionals dismissing my pain which has led to me doubting myself. I practically had to beg my gynecologist (who I am no longer seeing, I see someone new) to try and look into endometriosis for me.

He did a lap but he admitted to me he didn't look very hard. He found superficial endo on my bladder and my ovaries. He used ablation and put me on birth control. I stopped birth control last year because of the way it was affecting me.

I see a new gynecologist and he's going to do a lap on the 27th of this month. He's very nice and I like him better than my other gynecologist but I get the feeling he isn't expecting to find anything? Maybe I'm just paranoid, I don't know. I'm really bad at explaining my pain and fatigue to doctors, I tend to downplay it a lot.

He's going to make four incision sites and he says he'll excise anything he sees that's problematic. But I'm so worried I'm getting this done for no reason. Maybe I'm just being overdramatic. Maybe this pain is normal, maybe the fatigue is normal. My biggest fear is waking up out of surgery to hear that he found nothing wrong. It would make me feel like such an imposter.

The symptoms I suffer are profound fatigue, pelvic pain, heavy periods, bloating that makes me look pregnant, pain in the back of my thighs, pain in my hips, low back pain, and feeling generally unwell. I have some other TMI symptoms too relating to bowel movements.

I'm not sure what I'm trying to really say here. Any support and advice would be nice, I guess. Thank you for reading this if you did, I appreciate it! I'm sorry if this lacks coherency, I'm too tired to proofread right now.

  1. Hello back @Tera! Welcome to the community! Happy that you found us! I think it is completely understandable to doubt yourself, especially when there are medical professionals that are so dismissive. I have experience with this and it can be very anxiety-producing. Advocating for yourself can be challenging with endometriosis. I am glad that you changed gynecologists, that is you advocating for yourself. When we get the same unhelpful medical dialogue from doctors, it's easy to start second guessing ourselves. Your story resonated with me because we have similar symptoms. I too experience menorrhagia, chronic fatigue and pain in my pelvis, lower back, hip, as well as down my leg. Your fatigue is real. Your pain is real. You know your own body. You are not an imposter or a fraud. Whatever decision you decide to make about your surgery, I encourage you to continue to advocate for yourself because you deserve to be heard.

    I found this community even before my diagnosis of endometriosis and it has been a great source of support and resources for me! I hope to see you back here with an update. Be well.

    1. Hi Tera. Welcome to the community! Your feelings are completely normal, and we've all been there. I lost count of how many doctors I've seen who flat out told me they couldn't or wouldn't help unless I went on birth control...and this was AFTER I'd already been surgically diagnosed with stage 1 endo and tried 7 kinds of ineffective hormonal treatments. It is so frustrating. But know that your symptoms are all very common with endo and adenomyosis. Sadly, doctors often don't know how to treat people with endo, and that too often leads to them to dismissing patients. I've had doctors tell me the problem is me, not their lack of understanding about endo. Please keep searching for the care you deserve! And know that the extent of endo has nothing to do with the intensity of your pain. Endo is an inflammatory condition that affects the whole body. Let us know if you have any questions before your next lap! - Keri (team member)

      1. It took me 10 doctors to find a surgeon that would take me seriously and not normalize my pain. I am having surgery next week and definitely am having the same thoughts as you. However, my surgeon ordered an ultrasound with an expert who looks for endo and found at least one lesion. It is comforting because I also worry she will go in and find nothing. However, she says there is an 80% even if they had nothing on the ultrasound based on symptoms. Can you ask your doctor to remove everything he sees instead of just what is "worrying"? Endo grows so even if it is small now it will be bigger later. There are doctors that will take you seriously and believe that endo can be completely removed with little chance of re-growth. It can be hard to find them and you may have to travel but that is less time and money in the long term than multiple incomplete surgeries and living in pain.

        1. yes! right there with you, 10+ doctors before one would take me seriously and perform surgery to actually diagnose me. It definitely helps knowing they saw something on the ultrasound. But I also know how stressful it is when they don't find anything. I have had so many scans and it wasn't until they actually went in, they found all the lesions. I wish more doctors understood that- that it won't always show up on scans! Thank you for being here and commenting/supporting our community members. We want to send you a big hug and well wishes for your upcoming surgery! Hoping that you can find some relief from it. Please, do keep us posted on how it goes and how you are feeling if you can! Thinking of you <3 -Kimberli (team member)

        2. Popping in to say I hope your surgery goes really well. I'll be thinking good thoughts for you. Please let us know how it goes. ~Katrina, Advocate

      2. I feel like it’s very normal to worry about them going in and not finding anything. I’ve had three excisions, two including a bladder distention for interstitial cystitis, and each time I worried that she would get in there and not find anything. All that said, I’m so glad that you found a dr who will actually listen to and is willing to help. I hope surgery goes well for you. Please check in after and let us know how it went! Big hugs!

        Amber ( team moderator)

        1. we are so similar! I had three surgeries and a bladder distention for IC too! It is definitely scary going into each one thinking, okay they aren't going to find anything and just think I am crazy. It truly should not be this stressful for us to receive treatment! Surgery isn't fun to begin with but when you have doubts it just makes it that much worse! Hugs Amber! -Kimberli (team member)

        2. I agree so much. I feel like we have just been conditioned that our pain is in our heads. So we just assume that they won’t find anything when they go in. It just sucks that we have to feel like that!! Amber ( team moderator)

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