I saw on your profile that you are in RI, so I just did some double checking for you and found this:

Minimally Invasive Gynecologic Surgery
118 Dudley St.
Providence, RI 02905

Tariro Mupombwa, MD
Christine Foley, MD

P: (Phone number can only be seen by the question and answer creators)

Somewhere to start, they have the robotics system but I couldn't see if they have experience in removing it from the bowels and bladder if it is found there. It would be a great question to ask.

Hi Morgan,
Based on experience I would talk to your OB and see if they have any recommendations for a specialist since he is not. I learned through this last go round that a lot of OBGYNs do not have that experience and will refer you to a GYN Oncologist that does have that experience. I know the oncologist part can seem scary but if they find any on your bowels or bladder they are equipped to remove it. I would also ask if they utilize the DaVinci robotics system, it has better zoom capabilities and is able to turn in ways that a traditional laptopscopy cannot so more can be seen and excised. I would also push for excision and not ablation. Excision will remove the "root" whereas ablation, from what I understand only burns away what they can see.

I hope this helps! I understand the struggle and I understand the pain. This is a really hard thing to navigate, but you've got this!

Hi Morgan,
Seeing a specialist made all the difference for me. I initially had an ablasion with a local surgeon which helped somewhat but within months, my pain was right back where it had been before the surgery. I didn't have a specialist near me either, but I traveled to one and ended up having two excision surgeries. This was the only thing that relieved my pain significantly. I did ask my OB/GYN for a referral to a specialist, but they declined, so I chose to see a specialist on my own and just brought my surgical records to my OB/GYN after so they had them. It is a hard conversation to have, but in my case, it was worth it. Hope this helps and good luck!

All of that makes sense. From my perspective if they know they are not specialist and you know they are not a specialist then they should know you are going to ask for one. As he's the first doctor to take you seriously he should be understanding about you wanting to talk to someone about your surgery options and he may be able to provide you with specialists in your state or help you navigate finding an out of state specialist. I have learned to always ask and you have to advocate for yourself, especially with endo/adeno because the research isn't there nor is the taking it as a serious whole body approach. I spent years being told my endo couldn't be back and here we are 15 years later recovering from surgery again after having a significant amount of tissue, adhesions, scar tissue, and my entire peritoneum removed. It was back, it had been back, and now we're talking about a hysterectomy, and it took me years to finally say enough is enough and advocate for myself and another surgery. I think we get used to the pain and see it as just another day until it gets to the point where that isn't an option and that should not and does not need to be the case.

Thanks for taking the time to respond. I think my fear about asking my ob is that it hasn’t come up as a suggestion yet and as far as I know there aren’t any specialists in my state so I don’t know how that conversation would go. I definitely want to find a surgeon that does excision so I can find out if it would be right for me or not.