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Birdies

593d

did you have your laparoscopy done by an endo specialist? endo runs in my family and I was unofficially diagnosed but now that it's getting worse my gyn wants to do a laparoscopy to remove it...do I trust him?

Top reply
    • Birdies

      580d

      @KnotTheEndoTheWhirl this is a lot of very helpful information, thank you so much!

    • KnotTheEndoTheWhirl

      580d

      I’ve heard lots of good things about Nancy’s nook but I didn’t find anything remotely close to me on it and I live in a large medical-heavy metro area. The only one was a clinic that didn’t take insurance. Three things I would suggest: 1) look broadly at the Nancy’s nook list to identify themes (I.e, was there a specific fellowship where they earned their speciality?) and then look for doctors in your area who match those fellowships or other qualities. 2) I think that Urogynecology is the speciality where all the Endo specialists I’ve found practice. If you have to shoot in the dark, aim for a urogyno. 3) look for Endo clinical trials near you, identify the facility doing the trial, and look into their doctors. I don’t know a lot about clinical trials, but if the medical facility is doing research on it, chances are they have a specialist or two who are practicing. I had success by collecting referrals. My PCP referred me to 3 Urogynecologists (with the third being the most likely to help but the most difficult to get into, so she sent me to two others while I waited). The first two recognized it could be Endo but also acknowledged their lack of speciality (very important for them to know enough to know not everyone can do it). They were able to provide me additional referrals to doctors in the area who they know do specialize in it, so I have them in my back pocket. When I finally saw the 3rd, she was confident in Endo, set me up with surgery with a colleague who she trusted since her availability was awful. After the surgery I talked with the surgeon about options (I was comfortable continuing to see him but also hoped to get care closer to home). He was able to name several other specialists in the area and in my insurance network who he trusted and who had gone through he same fellowship as him. None of the people I’ve been referred to were on the Nancy’s nook list, but my surgeon was amazing and did the job and I trust his judgement about the others. All the referrals I was given have pretty great reviews, despite not being on the coveted list.

      • Birdies

        580d

        @KnotTheEndoTheWhirl this is a lot of very helpful information, thank you so much!

    • Doglover25006

      580d

      I have not had an endo surgery yet (trying but no surgeon will touch me to confirm the provisional diagnosis due to my poor wound healing secondary to hyper mobile ehlers danlos syndrome) but I’ve had other surgeries. My advice is if you are wondering if you can trust your surgeon you can’t trust them. You need to go into surgery without a doubt that the right doctor is operating on you. Trust your instincts and ask the surgeon lots of questions and see as many surgeons as it takes to find one you are completely comfortable with.

    • Belugabear

      580d

      I’d definitely find a specialist! I saw you said there’s no one on Nook near you, but are you able to travel? If there’s one within fiveish hours it’s worth going for sure, I travelled three hours for mine. There’s also specialists in training you could see, as well as some specialists that aren’t on nook, but not a lot of those. Sadly there just aren’t a lot of specialists. But if you want to avoid having several surgeries, it’s worth the journey. If you need help finding someone please reach out, I’ve found specialists for people many times :) best of luck!

    • MNVikingfan

      581d

      I had my OB do it and had no issues. They are trained for it. But if you have a doctor you don’t trust get another one for sure.

    • 100Percent_K

      588d

      I had it done by an OBGYN and eventually by an excision specialist. I would never let an OBGYN who isn’t specialized in excision and who doesn’t do these all day long touch me ever again. It made my pain worse, my quality of life spiraled down hill. I travel over 2 hours each way to see my specialist and she’s worth it every time.

      • Birdies

        581d

        @100Percent_K how did you find your specialist?

        • 100Percent_K

          579d

          @Birdies Nancy’s nook endo education page on fb 🙂

    • H.Martineau

      590d

      You want someone who specializes in endo to diagnose you first. My original gyn was just going to do a hysterectomy on me under 30 y/o I went and got a 2nd opinion and they referred me to someone who specializes in endometriosis and I was diagnosed as having endometriosis stage 4. Eventually had surgery to remove what they could along with my left ovary and ovarian cysts. It was a long surgery because the endo ended up spreading throughout my entire abdomen which my specialist had never seen before.

      • Birdies

        590d

        @H.Martineau do you know how I find a specialist? There aren't any on Nancy's Nook that are near me and I wouldn't be able to afford someone who is out of network with my insurance.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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