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Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
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09-09-2012, 05:05 PM
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HysterSister
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Posts: 136
Hysterectomy: October 15th, 2012
Surgery Type: TAH
Ovaries: Removed both
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Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
I'm 57 years young.
I've been bleeding every day for almost two years now. Hormone tests say I'm menopausal in every way except estrogen levels. For some reason, my estrogen has never slipped into "menopausal range," meaning that I've had estrogen feeding my uterine fibroids all this time. Most women's uterine fibroids shrink after menopause, because there is no estrogen to feed them.
CT scan says there is one or more large masses (probably uterine fibroids, I say) and that the uterus is full of old blood. There is tissue (probably a prolapsed uterine fibroid) caught in the cervix opening, so it can't close. I guess that is why I never stop bleeding -- I figure it's a slow drip from all that blood that is in the uterus.
OB/GYN could not get a successful endometrial biopsy on me, but he got a sample of the tissue protruding out of the cervix, which showed AGUS cells ("aggressive unspecified cells", which can -- in only 20 to 50 percent of cases at most -- be associated with a cancerous situation).
OB/GYN sent me on to a gynecologist who specializes in women's cancers. This doc has already decided I have cancer, even though there is no biopsied material available to confirm that. He tried to do a endometrial biopsy, and he failed too. He didn't even get as far as the other doc did -- at least that doc was able to biopsy the tissue hanging out of the cervix, along with cervix tissue too, I think.
So the cancer gyn has decided I need a total hysterectomy, and also removal of the ovaries and fallopian tubes.
Actually, I do think this is the right decision. I have had polycystic ovarian syndrome for years, and even had a resection done on both ovaries about 20 years ago.
The doc is supposed to be one of the best in this part of the country when it comes to minimally invasive surgery (DaVinci), but he must not feel I'm a candidate for that, because he's decided on a full surgical cut instead. I guess that's because of all the blood in the uterus.
Personally, I don't think it is cancerous, but I do concur that a total hysterectomy, and removal of the ovaries and fallopian tubes is called for anyway. Two years of constant bleeding -- sometimes quite heavy -- is not something I'd wish on my worst enemy.
I'm scared.
The doc won't schedule the surgery until I get clearance from my general GP, since I have high blood pressure and type II diabetes as well.
I have another appointment in two weeks, when I need to have a form signed by my GP saying I'm cleared for the surgery.
In the meantime, this doctor has not spent three minutes talking to either me or my husband. He had an assistant interview me -- a student doctor from the local med school.
But that didn't stop him from bolting into the examining room (first time I've ever seen this guy) and first thing he says to me isn't "Hi, how are you?" but it's "You have cancer."
I'm scared enough of the hysterectomy itself, but even more so of the fact that this hot shot doctor (who does have board certification in everything under the sun) doesn't seem to have any sensitivity to the fact that I AM ACTUALLY A HUMAN BEING.
(And no, I can't go to another doctor -- insurance issues I can't get around).
Thanks for letting me get this off my chest.
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09-09-2012, 05:44 PM
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HysterSister
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Posts: 1,619
Hysterectomy: August 22nd, 2005
Surgery Type: TAH
Ovaries: Removed both
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Re: Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
I totally understand what you're saying. Bedside manner with surgeon's can often be pretty meh. The good news is that once you're released from his care post-op you probably won't have to see him again. It's his skill set you need.
The "you have cancer" comment is atrocious. Have you asked him how he came to that diagnosis? That alone would be worth a follow-up phone call to his nurse or PA.
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09-09-2012, 08:11 PM
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HysterSister
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Posts: 407
Hysterectomy: June 27th, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
I hope everything goes smoothly for you.
I didn't like my surgeon much -- he also had almost no bedside manner. But, he's a skilled surgeon, so I was OK with dealing with it. He's not my regular doctor, so I also don't have to see him again. I'm grateful for his skill in the surgery. I think that's one of the most important things. He's done more than 400 Da Vinci hysterectomies.
When my doctor first floated the idea of hysterectomy she said she'd refer me to a really good surgeon who "loves taking women's uteruses." Ugh.
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09-09-2012, 08:50 PM
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HysterSister
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Posts: 41
Hysterectomy: August 28th, 2012
Surgery Type: LAVH
Ovaries: Removed both
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Re: Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
Hi HappyHen, I am also 57 and now 12 days post-op. I had pre-cancer cells thus a hysterectomy. They took everything because as my doctor said, the ovaries weren't really doing anything for me anyway. Just wanted to say that I hope you are able to schedule your surgery soon and honestly, the worse part is the thinking about getting it done. Post-op for me has been a breeze. Good luck!
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09-10-2012, 07:38 AM
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HysterSister
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Posts: 142
Hysterectomy: October 3rd, 2012
Surgery Type: TAH
Ovaries: Undecided
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Re: Uterus full of old blood, Hysterectomy Coming, Yeah, I'm Scared
I understand how you're feeling on this. I was surprised by my GYN recommending a TAH, because I've been going to GPs and GYNs for several years and had no indication of the growing fibroids even though I kept going to doctors because of symptoms that should have been an indication of what was happening to me. My concerns were always dismissed. I had very nice doctors, they just didn't inform me about what COULD happen if the fibroids grow instead of shrinking.
When my new GYN recommended a TAH, I was so surprised that I couldn't say much except, "OK." Since then, I found this site and have started writing down questions that I will ask. Fortunately, I can call his nurse with questions. It's usually a matter of leaving a message and she calls me back.
Your surgeon was completely tactless. The best thing about it is you were probably too stunned to react until later. Did he or the hospital not give you any point of contact where your concerns could be addressed?
A good friend of mine was told that she had cancer and was scheduled for a TAH. She did not have cancer at all, it was fibroids and endometriosis. She had a long recovery but says she felt so much better after the TAH that she was very glad she did it and felt like a brand new person.
I also had to get high blood pressure under control, but it's already down to normal after three weeks of meds. I've never had HBP before, it had always been a little low, but I was on the point of a stroke when I went to my GP. All I wanted was a referral for a GYN, but the GP found and began treating the HBP right away.
It's normal to feel scared and your surgeon sure didn't help. I know I'm scared, too, but you aren't alone. I would tell the GP about the surgeon's manner and ask the GP how to get the answers you need.
Good luck {{{{{HappyHen}}}}}
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