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Conflicted about situation, getting 2nd opinion
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09-08-2017, 11:52 AM
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HysterSister
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Posts: 67
Hysterectomy: October 13th, 2017
Surgery Type: TLH
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Conflicted about situation, getting 2nd opinion
Just looking for a reality check. The background to my story is this:
Gyn #1: I loved her, she treated my abnormal paps back in the 90s. She is incredibly inconvenient to get to, but works out of "the best hospital in Boston" for GYN issues. Once my paps normalized, I just went to my GP for paps.
Gyn #2: went to him when fibroids were discovered in 2007. He wasn't my first choice, just who was available on an emergency basis. He wanted me to have TAH from that minute on, despite my not having symptoms. I was never a candidate for TLH because he thought morcellation was bad and too risky due to blood loss. I left him in 2015 when I was sick of being harassed to have a TAH.
Gyn #3: Saw her two years in a row 15-16. She never wanted to give me a hyst of any sort since the fibroids weren't bothering me. Then she moved to CA.
Gyn #4: saw her this year in the same practice as #3. She recommended TLH because now the fibroids and my uterus are visible (which bothers my vanity, otherwise I'm asymptomatic). I'm just meeting her now for the first time, have no rapport with her, no level of trust and she's out of a hospital that just took over my local hospital, so it's a hospital I'm not familiar with.
I saw my GP's nurse practitioner last night on another issue and she was sort of wishy-washy on how good #4 is and what the experience of surgery is like at the new hospital and sort of nodded in agreement about the morcellation comment of #2. She was not at all reassuring about the current plan, but not outwardly negative either. When I said I'm going for a second opinion at #1, she jumped at it with excitement and encouraged me to do so.
So I have a surgical date with #4 for 10/13 and a second opinion with #1 on 9/14. Am I silly to feel sort of uncertain about the scheduled surgery and half-hoping that I get it done with #1? How much credence do you put into a rapport and a level of trust over time with someone? Certainly there are people who have a hyst done with a surgeon they've just met?
Any thoughts or comments either way are greatly appreciated.
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09-08-2017, 11:24 PM
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HysterSister
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Conflicted about situation, getting 2nd opinion
Why are you getting a hysterectomy if you are still asymptomatic?. Are the fibroids quite big, or growing fast? Just wondering. I'm the same age as you and have fibroids also.
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09-08-2017, 11:25 PM
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HysterSister
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Posts: 155
Hysterectomy: August 23rd, 2017
Surgery Type: TAH
Ovaries: Removed both
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Re: Conflicted about situation, getting 2nd opinion
I ended up having a TAH the day after meeting my surgeon, but mine was more of an emergency due to a massive 19.5x19x15cm tumor in my left ovary....talk about messing with my vanity! My GP had sent me to one surgeon, who I was also willing to use but she said I needed an oncologist. But I can say that the minute I met my surgeon I was comfortable and also very happy that he found my situation as urgent as I did. It ended up My tumor was ready to rupture and has wrapped itself around everything and attached itself to organs I would like to keep, like my rectum. I ended up loosing everything in there, including lymph nodes and appendix.
I have to admit I don't know much about fibroids but I keep seeing commercials about them, saying a hysterectomy was always recommended but this new procedure is available to remove/treat them.
Are they telling you why your uterus is visible? I know with my situation there was no option, but maybe various scans could help them see what's going on?
I agree you should get a second, or maybe 5th opinion. Given you are not in pain hopefully it's not urgent
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09-09-2017, 09:39 AM
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HysterSister
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Posts: 67
Hysterectomy: October 13th, 2017
Surgery Type: TLH
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Re: Conflicted about situation, getting 2nd opinion
I have developed quite a lower belly due to the size of the uterus and the one very large fibroid. When I lie flat, I can see it like a grapefruit. Believe it or not, it doesn't bother me otherwise, I just don't like looking pregnant!
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09-09-2017, 09:44 AM
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HysterSister
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Posts: 67
Hysterectomy: October 13th, 2017
Surgery Type: TLH
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Re: Conflicted about situation, getting 2nd opinion
Yikes! Yes, yours does sound much more urgent. I hope your surgery delivered and made you well again? I get some hope that you did well just meeting your surgeon the day before!
Ultrasound shows that my uterus is 7 month pregnancy size and I have, among many smaller fibroids, one the size of a grapefruit. It's only that I can see it and despite a slender frame, look pregnant, that I'm pursuing it. The new gyn says I ought to address it before the size becomes a problem (like blocking bladder or rectum from emptying). Just taking the fibroids apparently isn't an option when the uterus is this big.
I'm hanging a lot of hope on gyn #1 who I see on Thursday.
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09-09-2017, 10:27 AM
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HysterSister
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Posts: 1,010
Hysterectomy:
Ovaries: Kept 1 or both
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Conflicted about situation, getting 2nd opinion
I had UAE for my 9cm fibroid performed by an Interventional Radiologist. This worked great for me but my fibroid was smaller than yours. Rapport meant everything to me. I was offered a hysterectomy as my first and only option and this set off a lot of red flags as it seemed too drastic and excessive because this was my very first problem. A couple have been really eager in their push for hysterectomy and looked at me like I was crazy when I asked about saving my uterus. I in turn thought they were crazy to suggest major surgery as a first choice. As a result I consulted with many doctors. Finally I found one who told me of all possible alternatives and I went with the lesser invasive to start, Uterine Artery embolization. Aka: UAE. It worked great but it would have been nice to hear this earlier and to be treated earlier. I say go with your instinct as it your rest of your life.
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09-09-2017, 10:56 AM
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HysterSister
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Posts: 67
Hysterectomy: October 13th, 2017
Surgery Type: TLH
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Re: Conflicted about situation, getting 2nd opinion
Thank you, sisterduke! I think I'd feel better about the proposal if I knew the doctor better and if we'd been following this together the last several years. We'll see. I'm trying to get all the info I can to make the right decision for me.
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09-09-2017, 11:09 AM
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HysterSister
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Posts: 155
Hysterectomy: August 23rd, 2017
Surgery Type: TAH
Ovaries: Removed both
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Re: Conflicted about situation, getting 2nd opinion
I agree with your GYN about removing it before it gets worse. Because if the size of mine they had to cut me vertically from by belly button down to mid pubic area. My belly looks like Frankenstein right now. I'm only just over 2 weeks post op so I'm still optimistic about healing. But it's no fun. My incision swelled up a few days ago, then kinda popped and it's been leaking every time I stand up. Bathroom issues, pains, hormone issues kicking in....
So that said, find a dr your happy with and get it out ASAP. I would be happy to give you my dr's info but you'd have to come to NY. Boston has to have some great surgeons.
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09-09-2017, 11:30 AM
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HysterSister
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Posts: 67
Hysterectomy: October 13th, 2017
Surgery Type: TLH
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Re: Conflicted about situation, getting 2nd opinion
Thanks, Hanna5! Yikes, you sound like you've been through a lot, but hopefully your healing will take a turn for the better soon!
Yes, the doc I'm seeing for my second op works out of one of the best hospitals in the country for GYN (US News & World Report every year). That gives me some solace too. Plus I did have a history with her.
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09-09-2017, 01:31 PM
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HysterSister
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Posts: 155
Hysterectomy: August 23rd, 2017
Surgery Type: TAH
Ovaries: Removed both
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Re: Conflicted about situation, getting 2nd opinion
That's great. My sister in law is a NP in Boston, I'll ask her if she has any advice on surgeons up there.
I think I am still catching up mentally with everything that went on with me. It's literally been a month since my first hint there was a problem. I still don't even have the pathology results yet. I think part of what made me comfortable with my surgeon is that a good friend is an oncology urologist and he co-chairs the robotic surgery department with my surgeon, he got me in with my dr who is chief of onc/GYN and was not taking new patients. My friend John said this is the guy he would send his wife and daughters to. So I felt pretty good about it even before I met him, but as soon as I did meet him I was totally at ease, he was kind, tender, and obviously knew what he was doing and had a great personality and sense of humor. I tend to be sarcastic, especially when I'm nervous, so he nicknamed me trouble from the beginning. In addition his entire team is amazing.
I just wish this incision would stop oozing when I stand up so maybe I could put pants on, or at least underwear. I finally got out of bed and put a towel down on the outdoor couch to lay outside and get fresh air. I feel a little better out here. Maybe staying is bed isn't so healthy
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