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Old 01-08-2013, 11:26 PM
 
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I haven't been well for about a year. In July, an ultrasound said, "can't rule out ovarian cancer." Many doctors and tests later, I think they kinda sorta ruled out ovarian cancer. After my MRI, my oncologist said it was fine. He referred me to this laproscopic magician who specializes in laproscopic surgery on people with severe adhesions. I thought the purpose of this referral was to do exploratory surgery to look in there to see what he could see, to rule out cancer once and for all, and while he was in there he could free my bowls from my ovaries if they were adhered together causing me my abdominal pain. btw, we know I don't have endometriosis.

I see this magician today, and he tells me that he can't go into to just look because my MRI says everything is fine. But pain is a justifiable reason to go in and look. After his pelvic exam, he tells me that he'd like to do a hysterectomy, which is just the uterus. It's called something else when the ovaries are taken out. I'm not sure if it's a subtotal or a total hysterectomy but it's not a radical hysterectomy. (Of course, I'll get clarification before I go into surgery.) He'd go in to do the hysterectomy and clean up the adhesions, free the bowels and ovaries, leave the ovaries unless they didn't look okay. Initially I was all for it, I've always wanted the darn uterus taken out. I asked some questions and now I'm not so sure.

He thinks my abdominal pain on my right side is nerve damage due to all of the past surgeries I've had. He said the hysterectomy wouldn't solve that. What it will solve isn't clear. Adhesions normally don't show up on MRI, but there is heavy scaring between my uterus and my bladder. The two are completely joined together. So the pressure I have down there, plus the pressure from my uterus being turned outward and pressing against my abdomen would be resolved. IF damage isn't done to my bladder during the surgery. That's the risk I'm worried about. I've read online that many women have felt fantastic after having their bladder separated from their uterus during hysterectomy.

I sort of feel like I'm being railroaded into a hysterectomy, but at the same time, I want a hysterectomy. I went to the appointment planning to schedule a "look and see" laproscopic surgery. Now I'm considering a full blown major surgery that has a bigger recovery time any of my previous surgeries. Before you go thinking the guy is a total quack, I was begging my regular gyne to do a hysterectomy last July. The fear of ovarian cancer was just too great and I figured they should just rip it all out. He refused. LOL

So, it's not like I'm being pushed into something I don't really want. I'm just starting to weigh the risks and it's scary. I don't think I can not have any surgery because I feel I still need someone in there to see what's happening.
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Old 01-09-2013, 02:03 AM
 
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OP, I'd look into getting robotic surgery. The pain is far less and the recovery time is quick. I had mine a year ago and it went well. Unless you feel you want/need to keep your ovaries for the hormones, I would get the whole hysterectomy, the uterus, cervix and ovaries removed. If you are having adhesion problems and ovary problems to begin with, why keep them? Why have something left in your body that could become cancerus?
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Old 01-09-2013, 06:52 AM
 
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Never heard of robotic surgery. I found this on Dr. Oz's webside. Is a Robot-Assisted Hysterectomy a Better Hysterectomy? | The Dr. Oz Show It says that it's only beneficial in cases where laproscopic surgery won't work. I don't even think it's available in my city yet. This guy is the director of laproscopic surgery. Since robotic surgery is more expensive, he would have recommended it. And if it's only newly available in my city, I wouldn't want to have the surgery while the doctors are still learning how to use the equipment.

If I go for the cervix and the uterus too, that would be the total hysterectomy. At my age, there's really no reason for me to resist an oophorectomy too. It's not like I won't be in menopause soon anyway. He didn't offer it though. When I'm ready to take the leap, I'll have to go have another appointment with him to discuss exactly what we're doing.

I'm worried about damage to my bladder, bowels, and pelvic floor. I can tell my pelvic floor is already starting to weaken. I'm wondering if I should take 8 weeks to strengthen my pelvic floor prior to surgery. Would that even help? I've read it's common for women to have pelvic floor problems AFTER hysterectomy. I wonder if having a stronger pelvic floor prior improves the outcome. I haven't been able to find any information on that.

If all of my severe pain is nerve damage due to past surgeries, more surgery is probably going to kill more nerves. He gave me a prescription for nerve pain medicine. It should be interesting to see if that pain improves.

I guess I need to call my oncologist to clarify if he's wanting this as exploratory surgery to rule out ovarian cancer once and for all. Or if my oncologist already ruled out ovarian cancer and merely referred me to this guy so he could try to help me figure out what causes me pain.
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Old 01-09-2013, 10:37 AM
 
Location: Chapel Hill, N.C.
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During a regular exam my family doctor found a grapefruit sized ovarian tumor and sent me for MRI and to surgeon. it was decied I should have a complete hysterectomy. This was at age 61 or 62 so well past menopause. I wish I had done more research about the different kinds of hysterectomies. I was just scared it was cancer and figured at my age i didn't need any of that stuff in there.

I was diabetic and had a terrible time healing. Ended up with hernia and that surgery did not heal well either. So now I've had another hernia and I've just lived with it.

I think even after menopause some hormones are released by ovaries. My diabetes got worse, I have absolutely no muscles in my belly but I had a bunch of other surgeries 20 years prior so I guess all that cutting is going to take its toll.
Tumor was benign which was lucky and I guesss I had to have surgery to find that out.
Hopes I sincerely hope you can get the answers you need to make a good decision.
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Old 01-09-2013, 10:48 AM
 
Location: Austin
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OP, I sent you a DM with info for a great website and forum that can maybe help you with your decision. If anyone else wants it, let me know.
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Old 01-09-2013, 12:50 PM
 
Location: So Ca
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Quote:
Originally Posted by Hopes View Post
I guess I need to call my oncologist to clarify if he's wanting this as exploratory surgery to rule out ovarian cancer once and for all. Or if my oncologist already ruled out ovarian cancer and merely referred me to this guy so he could try to help me figure out what causes me pain.
This is important. I assume that your gynecologist took a CA 125 test on you to determine if you have ovarian cancer. If he gave you a pelvic exam and had concerns about your ovaries, he sent you for an MRI, right? Ovarian cancer is not something he should be taking lightly. Please tell us that he's ruled this out.
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Old 01-09-2013, 03:59 PM
 
43,011 posts, read 103,095,062 times
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My gynecologist oncologist has run CA 125 (which isn't reliable) and I've already had an MRI. Everything is normal. BUT, my initial ultrasound says "can not rule out ovarian cancer" so I suspect that the gynecologist oncologist is not happy with merely going by a normal CA 125 and MRI. It was my understanding that he was referring me to this laparoscopic gynecologist to go in there and get eyes on the ovaries to absolutely and completely rule out ovarian cancer. He mentioned as an after-thought that if my ovary is attached to my bowel, this laparoscopic gynecologist could cut the adhesions and free my bowels.

The reason I think I need clarification from my gynecologist oncologist is because I don't think I can turn down this surgery if he's still trying to rule out ovarian cancer. If he is still looking for cancer, then I need to make a decision of if I want a hysterectomy. If I don't want a hysterectomy, I need to inform this laparoscopic gynecologist that I merely want the "look and see" laparoscopic surgery instead of a hysterectomy. If he's not looking for cancer anymore and completely ruled out cancer, I merely have to decide if I want a hysterectomy without worrying about if I'm not following through with a cancer diagnosis/ruling out.
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Old 01-09-2013, 04:15 PM
 
Location: Southern New Hampshire
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I had a hysterectomy at 38 (long & sad story that I won't go into). I had no idea that the recovery time was supposed to be 6 weeks -- I was giving a final exam 4 days after getting out of the hospital and was back to running after a couple of weeks (I was supposed to wait but was going INSANE not being able to go running so I went and it was fine). I was in the best physical shape of my life before the surgery, so I am sure that helped with the recovery time being almost nothing. I had NO physical problems afterward with my bladder or anything else. I have read scary stories SINCE then and I don't know if I just got lucky or what (my surgeon had literally decades of experience and I don't blame him for anything -- my circumstances were unusual). I did have emotional issues afterward but unfortunately those were to be expected due to my situation, so Hopes, I don't think they would at all apply to you.

Good luck with your decision!
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Old 01-09-2013, 04:25 PM
 
Location: West Virginia
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I am going thru the same thing your are! On Jan 25th I go into the Hospital IF the Lump in my uterus is Not cancer I be in the Hospital about a week. IF it is I be home within hours! This to is something I been wanting for yrs! The closer it gets the more Nervous I am LOL
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Old 01-09-2013, 04:42 PM
 
Location: Wonderland
63,873 posts, read 52,710,937 times
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I won't bore you with the long story, but just let me tell you that I had a hysterectomy at age 38 and it was the best health decision I have ever made. I literally felt better the day after surgery than I had in three years! I did the hormone replacement (estrogen only) thing till I was about 45 and then stopped that - my family goes into menopause early so I figured it wouldn't hurt me, and I am at a very low risk for osteoporosis as well. I have felt great - had no significant problems.

Like it sounds like with you, it was only after a multitude of tests, MRIs, ultrasounds, biopsies, etc that my doctor finally said this rather odd phrase, "Well, I can offer you a hysterectomy and see if that solves the problem." Actually, just a few weeks later, we did an ultrasound which showed a severe overgrowth of uterine tissue, which was causing such an overload of estrogen into my system that I felt like my entire body was going crazy. It was also shedding abnormal cells. As my doctor put it, "You don't have uterine cancer, but all cases of uterine cancer start off this way." So - with my family history of ovarian cancer, we decided to just take everything out.

I had a good recovery, felt great within two weeks, never had any issues with the very low dose of estrogen they put me on via a patch afterwards, and continue to feel great 12 years later. I am going to PM you though with some pertinent information I think you may be interested in that may help in your decision.

Everyone's different, but I certainly don't regret having a complete hysterectomy. It really improved my overall health and well being.
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