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New and terrified - robot assisted total hysterectomy for cysts New and terrified - robot assisted total hysterectomy for cysts

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  #1  
Unread 01-20-2021, 01:31 PM
New and terrified - robot assisted total hysterectomy for cysts

Hi! I'm new. I don't have my surgery scheduled yet - probably February - just waiting on insurance but the doc says that is just procedure - he expects it to go through easy. I'm having a robotic assisted laprescopic total hyst. I.AM.TERRIFIED!!!

They see cysts on my ovaries that are "most probably" benign, but they need to remove them to be sure - both of them. My questions are overwhelming! Dr. says many only need narcotics a couple days and as soon as I'm off narcotics I can drive. Which makes me happy and afraid. I'm afraid of annestesia. I'm afraid of "what if" it's cancer (but my blood markers are good so they say if it is it is early.). I'm afraid I'll die in surgery. I'm afraid of what it's like after... does everything feel empty inside? My dr. says it is easy - it will be like my gall bladder coming out.... and easier than c-section. Friends said it was easy - I have read a plethora of stuff online and friends have said to quit reading online - but another friend referred me here - said yall are real and honest and not over optimistic or pessamistic. I'd appreciate any advise.
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  #2  
Unread 01-20-2021, 02:21 PM
Re: New and terrified - robot assisted total hyst for cysts

and

Hearing that we need a hysterectomy can be scary! We're glad you joined so that you have a place to gather information and to get support from women who can share from experience.

If you haven't sought out another medical opinion from a doctor independent of the practice you go to now, it would be a good idea to do so. Perhaps another doctor would take a different approach. What is it about your uterus that requires it to be removed? Did your doctor give you an explantion for that?

Many women have ovarian cysts and don't get their ovaries removed, or go ahead an have their ovaries removed but keep the uterus. One possible approach would be to have the cysts biopsied and only proceed with additional surgery if cancer is detected. It's worth discussing with your doctor to find out if that would work for your situation.

Your Member Survey indicates that you are unsure if you will keep your cervix or not. Just to clarify the medical terms, which can be confusing, a total hysterectomy by definition is removal of the entire uterus, which includes the cervix. A partial hysterectomy leaves the cervix portion of the uterus intact. Removal of the tubes and ovaries is a surgery called bilateral salpingo oophorectomy (BSO) and isn't a part of the definition of any type of hysterectomy.

Research, ask questions, seek out at least one more medical opinion, and then decide what is best for your circumstances. A hysterectomy, with or without the BSO, is major surgery and obviously can't be undone once those organs are removed.

Whatever you decide, we'll be here for you every step of your journey!

  #3  
Unread 01-20-2021, 03:22 PM
New and terrified - robot assisted total hysterectomy for cysts

Thanks for your reply. I never thought to ask the dr about the cervix. My pcp and him both agree on total hysterectomy. He mentioned tubes, uterus, ovaries. Not sure if the cervix. Ovaries both have cysts that are abnormal. They say there is danger in doing a biopsy.... and they are enough abnormal that they want a look. The uterus.... he mentioned that if it’s cancer that would need to come out too. I didn’t ask why specifically, but I can read my chart and tests. It says the cysts are overlapping the uterus. Maybe that is why? I also have had terrible periods for some time.... I went in with bladder infection and test was inconclusive so they did a ct worried about appendix and found these big cysts with solid and fluid components and abnormal shape.
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  #4  
Unread 01-20-2021, 05:34 PM
Re: New and terrified - robot assisted total hyst for cysts

i would definitely suggest getting a second or third opinion before you agree to a total hysterectomy (which removes the cervix) and removal of both ovaries.
  #5  
Unread 01-20-2021, 06:37 PM
New and terrified - robot assisted total hysterectomy for cysts

  Quote:
Originally Posted by dressedupinblue View Post
i would definitely suggest getting a second or third opinion before you agree to a total hysterectomy (which removes the cervix) and removal of both ovaries.
I agree, 70% of women experience cysts, most don’t even know and Most cysts are benign.

I would definitely seek at least another opinion
  #6  
Unread 01-20-2021, 07:38 PM
New and terrified - robot assisted total hysterectomy for cysts

smaek, hi! I just read your post and my heart sank. I have some good advice for you, talking from first hand experience. This October I went for a pap and transvaginal ultrasound. There were cysts on both ovaries. (one, like yours, was designated "solid and fluid components-complex cyst" and a dermoid (benign) cyst on the other.
The first doctor immediately said "Total Hysterectomy". I was shaken and thought it was pretty abrupt. Like you, he said most likely no cancer as my ca125 was very low/normal. BUT, he stressed, just in case we will remove everything. He could not wait to schedule me for surgery of what he deemed useless organs. (I am 50, btw) Iof course went for a second opinion.
The second doctor at first talked cystectomy only (probably to make me comfortable with him at first). Second visit it was Wellll, we really cannot be sure until we get in there- and scheduled me for "possible hyst" on consent form - this legally gives him the right to remove whatever he wants, benign or not.
I did tons of research (knowing all along I'd never ever let a doctor do that to me) about ovarian cysts and how you can get a better definitive look at what they are. Many studies have shown MRI to be superior to both US and CT scans in diagnosing malignancy in indeterminate ovarian masses.
I called the doctor for a referral for an MRI....he literally refused me. He also cancelled the appointment I requested to midify the surgery consent form (said appointment was useless). I went and got my own MRI (with contrast dye) and found out my left cyst was gone - it was a smooth simple cyst...and a definitive dermoid. I chose to leave it as I have no symptoms.
I am sorry to be writing this long post but your fear and worries, plus the familiar way your doctor tells you it will be easy, really has the hair on my neck standing up. Smaek, PLEASE- before you even think about scheduling a hysterectomy, get yourself an MRI and have the radiologist give you the report directly.
I know we like to put our trust in doctors but when it comes to your sex organs (yes, we have been taught to call them reproductive organs) it is just too important not to be your own health advocate.
The business of hysterectomies is a sad but true fact:
Hysterectomy is one of the most commonly performed surgical procedures in women. The majority of these are unnecessary.
Estimates suggest that one in nine women will undergo hysterectomy during their lifetime and that approximately 600,000 procedures are performed each year in the United States. Although hysterectomy is the treatment for most gynecologic malignancies, the vast majority of hysterectomies are undertaken for BENIGN gynecologic disease.

This is mindblowing-and the more organs they remove, (ovaries, tubes, uterus and cervix) the more money they make. Each medical student must have 85 hysterectomies under their belt to graduate, btw.

Now for the health factors related to hysterectomies:
Heart disease,*loss of sexual desire, arousal, sensation and uterine orgasm,*weight gain,*osteoporosis,*bone, joint and muscle pain and immobility,*painful intercourse, vaginal damage,*displacement of bladder, bowel, and other pelvic organs,*urinary tract infections, incontinence,*chronic constipation and digestive disorders,*fatigue,*loss of stamina,*altered body odor,*loss of short-term memory,*blunting of emotions, personality changes, despondency, irritability, anger, reclusiveness and suicidal thinking.
Read up....search the internet! Google women's real stories.

Although incredibly heart breaking, they played a huge part in my "dodged bullet".
So please please do not let your doctor or second or third opinion doctors talk you into this. Find out if your cysts are harmless- there are so so many types of ovarian cysts and most are benign. Find out what alternatives there are. Don't be one of the 600,000 maimed women just to make a doctor money. Good luck and feel free to ask me any questions.
  #7  
Unread 01-22-2021, 09:11 PM
Re: New and terrified - robot assisted total hyst for cysts

Hi there, Smaek!
Sorry to hear that you are going through this!

I know it feels really awkward and weird to ask for a second opinion, but do it -- with a different doctor and hospital if you can. I felt so bad to do so, but the first surgeon I consulted wasn't upset at all, in fact encouraged me to do so. And a good professional should not be taken aback at all by it. After all, you are the one who ultimately has to live the life that comes after. And regardless of the method, this is major, life-changing surgery. For many women, the change is a positive one, but this is not at all like having your gallbladder out.

I kept both ovaries (wasn't sure going in if one was going to have to go, but it was OK), everything else out, and, as odd as it may seem, didn't feel physically empty afterwards at all.

Please, please do get a second and possibly even a third opinion, especially with regards to the situation with your ovaries.
  #8  
Unread 01-23-2021, 09:21 AM
New and terrified - robot assisted total hysterectomy for cysts

Good luck with your surgery. It’s good that you have a support network of friends to help you and share their experiences. The surgery will go well, most people don’t have issues with it. Just make sure you have them give you nausea medicine, throwing up after the surgery really hurts. The doctors had to give me 3 different types or anti-nausea medicine for it to finally stop. So make sure you ask for what you need rather than suffering if that happens to you. You will be fine; lean on the experiences of your friends who have already been through this. Today is my first day home from the hospital and I’m doing well, just a lot of gas. Good luck with everything. Will keep you in my prayers.



  Quote:
Originally Posted by smaek View Post
Hi! I'm new. I don't have my surgery scheduled yet - probably February - just waiting on insurance but the doc says that is just procedure - he expects it to go through easy. I'm having a robotic assisted laprescopic total hyst. I.AM.TERRIFIED!!!

They see cysts on my ovaries that are "most probably" benign, but they need to remove them to be sure - both of them. My questions are overwhelming! Dr. says many only need narcotics a couple days and as soon as I'm off narcotics I can drive. Which makes me happy and afraid. I'm afraid of annestesia. I'm afraid of "what if" it's cancer (but my blood markers are good so they say if it is it is early.). I'm afraid I'll die in surgery. I'm afraid of what it's like after... does everything feel empty inside? My dr. says it is easy - it will be like my gall bladder coming out.... and easier than c-section. Friends said it was easy - I have read a plethora of stuff online and friends have said to quit reading online - but another friend referred me here - said yall are real and honest and not over optimistic or pessamistic. I'd appreciate any advise.
  #9  
Unread 01-23-2021, 09:46 AM
New and terrified - robot assisted total hysterectomy for cysts

Thank you Martino for this insightful post. My original doctor was very callous and insensitive and wanted to remove everything. I’m so thankful I got a second opinion and as a result had a good surgical team with a plan to maintain as much of my reproductive organs as possible. This post will be helpful to a lot of people. It’s important to go with your gut and do research and if the doctor doesn’t feel right then don’t let that doctor perform surgery on you. I’m sooo thankful I cut ties with the original doctor. Today is my first day home from the hospital. My surgical team was very attentive and visited me often when I was in the hospital. I had a lot of support, that would not have happened with the other doctor. Your post is very powerful. Thank you again for sharing your journey

  Quote:
Originally Posted by Martino View Post
smaek, hi! I just read your post and my heart sank. I have some good advice for you, talking from first hand experience. This October I went for a pap and transvaginal ultrasound. There were cysts on both ovaries. (one, like yours, was designated "solid and fluid components-complex cyst" and a dermoid (benign) cyst on the other.
The first doctor immediately said "Total Hysterectomy". I was shaken and thought it was pretty abrupt. Like you, he said most likely no cancer as my ca125 was very low/normal. BUT, he stressed, just in case we will remove everything. He could not wait to schedule me for surgery of what he deemed useless organs. (I am 50, btw) Iof course went for a second opinion.
The second doctor at first talked cystectomy only (probably to make me comfortable with him at first). Second visit it was Wellll, we really cannot be sure until we get in there- and scheduled me for "possible hyst" on consent form - this legally gives him the right to remove whatever he wants, benign or not.
I did tons of research (knowing all along I'd never ever let a doctor do that to me) about ovarian cysts and how you can get a better definitive look at what they are. Many studies have shown MRI to be superior to both US and CT scans in diagnosing malignancy in indeterminate ovarian masses.
I called the doctor for a referral for an MRI....he literally refused me. He also cancelled the appointment I requested to midify the surgery consent form (said appointment was useless). I went and got my own MRI (with contrast dye) and found out my left cyst was gone - it was a smooth simple cyst...and a definitive dermoid. I chose to leave it as I have no symptoms.
I am sorry to be writing this long post but your fear and worries, plus the familiar way your doctor tells you it will be easy, really has the hair on my neck standing up. Smaek, PLEASE- before you even think about scheduling a hysterectomy, get yourself an MRI and have the radiologist give you the report directly.
I know we like to put our trust in doctors but when it comes to your sex organs (yes, we have been taught to call them reproductive organs) it is just too important not to be your own health advocate.
The business of hysterectomies is a sad but true fact:
Hysterectomy is one of the most commonly performed surgical procedures in women. The majority of these are unnecessary.
Estimates suggest that one in nine women will undergo hysterectomy during their lifetime and that approximately 600,000 procedures are performed each year in the United States. Although hysterectomy is the treatment for most gynecologic malignancies, the vast majority of hysterectomies are undertaken for BENIGN gynecologic disease.

This is mindblowing-and the more organs they remove, (ovaries, tubes, uterus and cervix) the more money they make. Each medical student must have 85 hysterectomies under their belt to graduate, btw.

Now for the health factors related to hysterectomies:
Heart disease,*loss of sexual desire, arousal, sensation and uterine orgasm,*weight gain,*osteoporosis,*bone, joint and muscle pain and immobility,*painful intercourse, vaginal damage,*displacement of bladder, bowel, and other pelvic organs,*urinary tract infections, incontinence,*chronic constipation and digestive disorders,*fatigue,*loss of stamina,*altered body odor,*loss of short-term memory,*blunting of emotions, personality changes, despondency, irritability, anger, reclusiveness and suicidal thinking.
Read up....search the internet! Google women's real stories.

Although incredibly heart breaking, they played a huge part in my "dodged bullet".
So please please do not let your doctor or second or third opinion doctors talk you into this. Find out if your cysts are harmless- there are so so many types of ovarian cysts and most are benign. Find out what alternatives there are. Don't be one of the 600,000 maimed women just to make a doctor money. Good luck and feel free to ask me any questions.
  #10  
Unread 01-30-2021, 03:24 PM
New and terrified - robot assisted total hysterectomy for cysts

I just had robot assisted laparoscopic total hysterectomy with salpingectomy (I got to keep my ovaries) on 01/11 and there was nothing to it. Mine had to be done because I developed a hematometra several years after having an endometrial ablation done (dr also found endometriosis behind my uterus during the surgery). The pain afterwards was not near as bad as what I had when I had my gallbladder removed many years ago. My obgyn did a TAP block & that helped tremendously in getting me up & moving sooner. Right now I’m still taking it easy & starting to make preparations to go back to work soon.
If you feel uncomfortable with the idea of having a hysterectomy & you don’t have a medical need for one yet then get a 2nd opinion from another obgyn.
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