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Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

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  #11  
Unread 09-11-2012, 01:11 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

  Quote:
Originally Posted by WIGal1266 View Post
Hi,

I had a myomectomy in 2001, no ablation (I'm curious about that - why do they suggest that on top of the myomectomy? to control bleeding?). It bought me a good 9-10 years, but sadly no children. I was only 30 at the time and that was the best option for me since I had many fibroids and my uterus was big.

My period was normal and very light when on BC until a brand new batch of fibroids cropped up, so over the past year it has gotten heavy. This batch was even bigger and worse than before (my uterus was over 900 grams after Lupron).

I was 41 when I got the diagnosis for hysterectomy, with a second opinion. Another myomectomy was impractical - I had already had a lot removed and my uterus would be turned into swiss cheese, it was not salvageable. Not to mention, my family hits menopause in their mid 50s on both sides so I easily had another 10-15 years left in which time more could return and there is no way I'm doing a 3rd surgery.

There was no option but hysterectomy.

Regarding the cervix, well, I wasn't able to have a tumor or two removed last time because they on the cervix. Yep, it does happen since the cervix is just part of the uterus. I also had 2 abnormal paps, although it turned out to just be really weird anomalies, not cancer related. So I had that removed, that was an easy decision for me.

I also did a bladder sling, really more to prop the urethra since I was suffering from stress incontinence (that runs in the family). They use the safe mesh, the one used for hernias. My aunt had a sling and has had no issues. So far so good for me. It is a huge improvement. I can't imagine there's really anything to worry about there, especially if your doctor specializes in women's pelvic health. My doctor does as well which was quite convenient!

It seems you are close enought to menopause hopefully that a myomectomy will alleviate things until you get there, especially if you only have one to remove. It's true that it's better to keep as many healthy organs as possible.

Good luck with whatever you choose!
Hi WIGal - - and thanks for telling your story! Sorry to hear of all you went through. However, I am so glad to hear about the Bladdar Sling working and being a huge improvement.

The ablation, from what I understand, is a burning of the uterine lining that reduces menses.

I did speak in depth with the surgical nurse today and here is where we came out on my questions...this is just my replay in my words, so please don't take any of this as "fact"!! If you have experienced different, please share....

1) Final discussion on pros and cons...Does the uterus help supply the blood flow to the heart, or just the ovaries (as mentioned above). I think I was confused on that point

A: The uterus helps supply blood flow to the ovaries, which helps supply blood flow to the heart. Also re: Myomectomy, periods may continue, but with the ablation, menses is reduced in 80-90% of patients, with some stopping menses all together.

2) Supracervical vs. Total Hysterectomy. My thought was maintaining the cervix would help with sexual function - - plus, I have never had a bad pap, so he didn't see a need to remove. To greysown's point above, can there still be mini-periods, and can fibroids still grow back on the cervix?

A: There can be mini-periods after a hysterectomy, but the Dr. can perform a procedure in his office with silver nitrate to help reduce/eliminate. (I didn't ask about this, though!). Fibroids cannot regrow without a uterus.

3) Bladdar sling - - will this be mesh, or some skin from my own body, or what? We haven't really discussed this. Side effects? Recovery?

A: My Dr. uses mesh. A catheter may need to be in place after surgery if the bladder "falls asleep", isn't performing well after recovery.

So, we talked more about my current quality of life, bleeding, etc...I may only have the one large Fibroid, but it causes me significant pain and bleeding. I feel like, for me, the myomectomy is a band-aid approach at this point, and I just want it all done and overwith with no chance of coming back. Am I trading one problem for another? I don't know...everyone recovers differently and has different hysterectomy experiences. But for me, right now, the pain, the periods, the bleeding, everything - - I can't take it anymore. And to think I may have periods another 5 years, even if reduced, well...I am just kind of "over it" all.

I am back to where I was leaning before. Supracervical Hysterectomy. But still reserving the right to change my mind!
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  #12  
Unread 09-11-2012, 03:06 PM
Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

Why do you think a myomectomy is a bandaid?? A bit confused on that. They completely remove the fibroid so its no longer there. Once women hit their 40's they won't grow any more fibroids so once its gone its gone for good. Also once the fibroid is removed your periods will be next to nothing.. fibroids are what make you bleed so much...... so if its gone so is all the heavy periods...... and you also retain your uterus and keep your ovaries healthy for the rest of your life...

The women who have myomectomies in there 30's usually are the ones that have the regrowth but not for 5 to 10 years. But whereas your 48 you won't grow any new ones at this point. Once that one is removed you won't have to ever worry about another fibroid re-appearing but it is your decision.... try researching everything on the internet and find sites that talk with women who have had myomectomies whereas this site you find more hysterectomies than anything else.
  #13  
Unread 09-11-2012, 03:26 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

cleo,

It's not true that fibroids don't grow for women in their 40s. I'm living proof that fibroids grow for women in their 40s - the risk is also higher as we get older up until menopause. My fibroids have been growing out of control and I'm 42. We have been monitoring them ever since I was first diagnosed over 11 years ago. I have seen other posters state that as well.

My mother's fibroids first presented in her 40s.

The only thing that stops them from growing is menopause. Lots of us hit that in our 50s. Based on my family history on both sides, I'm not likely to hit menopause until maybe 52 or my mid 50s.

It's true that someone at age 48 could be close to menopause, but not necessarily. I have a good friend in her 50s and her mom hit menopause at 65! (That's an exception for sure, but it happens).

I get the point about it possibly being a bandaid. That was part of my discussion with my doctor. Do a less permanent solution now and risk surgery again in 10 years (52) or do the hysterectomy now.
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  #14  
Unread 09-11-2012, 03:26 PM
Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

I'm also with WIGal and don't understand why they would do an ablation with a myomectomy .... I've never heard of that. The myo. should take care of the heavy bleeding once the fibroid is out. I went to 3 different doctors and none of them mentioned an ablation with the myo. and I went to the top specialists in Boston at Brigham and Womens hospital.
I would just hate to see you have a hysterectomy for one fibroid .... please weigh all your options first ... you might even want to get a few more opinions from different doctors.

I didn't say they don't grow in your 40's ..... I meant you can't grow any new ones.... Once you hit 40 you have all the fibroids your ever going to get. Sometimes women have myo's and small fibroids are left behind and they can definately start growing well into your 40's. Or other women don't ever notice they have fibroids until their 40's but they have always been there and were just small to ever been noticed or cause problems. Women tend to notice them in their 40's because thats when they have their biggest growth. This is what I was told

More than likely when you had your fibroids removed they left some small ones they couldn't see WIGal and your fibroids probably developed in your 30's before you even hit your 40's and yes your fibroids will grow like crazy in your 40's but I was told by doctors once you hit 40 you won't grow new ones but the ones left in there will continue to grow til menopause.
  #15  
Unread 09-11-2012, 05:04 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

First, my fibroid presented itself at 48, so the idea that once you hit 40 you are "going to get all the fibroids you are going to get" is a bit off to me. I am not sure I get it.

Women in their 40's who have a myomectomys DO have a chance to have fibroids return. I am not sure why any doctor would definitively say that could "never" happen. If I had that kind of guarantee, I might give the myomectomy much more weight for me personally. But maybe I am reading comments wrong?

The chance may be slim for fibroids to re-occur after myometomy in older women, but it's still a chance. I am a woman who contracted a "very rare" life-threatening heart condition after child-birth (peri-partum cardiomyopathy) so I tend to scoff a little at "small chances" and "slim percentages". For me, if there is a chance for fibroids to return, an interim procedure is a band-aid. Those are 100% my choice of words, and I prefaced all of my posts saying so. I definitively said "FOR ME, it's a band-aid"

Also, I realize some have had several fibroids, and I only have "one" but I wonder if everyone's pain and bleeding is different based on the size and location of the fibroids and other factors? All I know if that my "one" is a bugger, and it's ruining my life.

I have done extensive research - - but not on myomectomy support sites. If there is one out there, I would like to know about it. I realize this site is geared toward hysterectomies.

I have also seen two OB/GYN doctors, with my current surgeon being the leader in this field in Chicago, and some say in the country. I have also had extensive consultation with my cardiologist. So, lack of research and professional opinions are not my issue.

I came here because I wanted some help in making the decision on which procedure is right for me, and was hoping to get some input based on other people's personal experiences. I feel like I am getting that for the most part, and I thank you all for it.
  #16  
Unread 09-11-2012, 05:33 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

  Quote:
Originally Posted by KakiChi View Post
First, my fibroid presented itself at 48, so the idea that once you hit 40 you are "going to get all the fibroids you are going to get" is a bit off to me. I am not sure I get it.

Women in their 40's who have a myomectomys DO have a chance to have fibroids return. I am not sure why any doctor would definitively say that could "never" happen. If I had that kind of guarantee, I might give the myomectomy much more weight for me personally. But maybe I am reading comments wrong?

The chance may be slim for fibroids to re-occur after myometomy in older women, but it's still a chance. I am a woman who contracted a "very rare" life-threatening heart condition after child-birth (peri-partum cardiomyopathy) so I tend to scoff a little at "small chances" and "slim percentages". For me, if there is a chance for fibroids to return, an interim procedure is a band-aid. Those are 100% my choice of words, and I prefaced all of my posts saying so. I definitively said "FOR ME, it's a band-aid"

Also, I realize some have had several fibroids, and I only have "one" but I wonder if everyone's pain and bleeding is different based on the size and location of the fibroids and other factors? All I know if that my "one" is a bugger, and it's ruining my life.

I have done extensive research - - but not on myomectomy support sites. If there is one out there, I would like to know about it. I realize this site is geared toward hysterectomies.

I have also seen two OB/GYN doctors, with my current surgeon being the leader in this field in Chicago, and some say in the country. I have also had extensive consultation with my cardiologist. So, lack of research and professional opinions are not my issue.

I came here because I wanted some help in making the decision on which procedure is right for me, and was hoping to get some input based on other people's personal experiences. I feel like I am getting that for the most part, and I thank you all for it.
You say your fibroid presented itself at 48 but how do you know you didn't have it all along did you have ultrasounds every year up to age 39? Because most small ones can only be seen on an MRI .. I had fibroids show up on an ultrasound when I was 28 years old and I lived with them my whole life until I was 45 then I started having issues because they grow so much in your 40's so I can see not noticing it until you were 48 but more than likely it was always there you just didn't have any problems. I'm just going by what the doctors have told me thats all I can go by and many health articles I've googled and researched on line also said you won't develop new ones in your 40's so I'm not sure I can believe they are all wrong. My doctor also told me the women who's fibroids supposedly return is because the surgeon didn't remove all of them .... sometimes small ones are hard to see so if your in your early 40's by late 40's those small ones that were not removed will definitely grow. Whereas you are 48 if they can't find any others and even if you have small ones they won't grow enough before menopause sets in. I do agree some women can have late menopause but the average age is 50 ... they usually say go by your mom and when she hit menopause and you'll most likely follow. It sounds like you already have your mind made up for the hysterectomy which is fine you have to do what your comfortable with I was just trying to let you know my myomectomy story along with important facts and info. from some of the top doctors in the world. Just wanted to share ..... I want people to be as informed as possible. Trust me I wouldn't be saying stuff like this if it wasn't true this is a serious decision ..... I went crazy myself trying to find information about all this stuff and I too struggled with my decision but if you are afraid they will come back then the only way to guarantee it is to remove the whole uterus. I even read that in cases of leiomyosarcoma, some women choose myomectomy. Also I'm not sure if you are taking birth control pills but they also make fibroids grow like crazy so I would stay clear of them. It all comes down to feeling comfortable with your decision and making the right one for you.
Good luck.
cleo619
  #17  
Unread 09-11-2012, 06:46 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

  Quote:
Originally Posted by KakiChi View Post
All I know if that my "one" is a bugger, and it's ruining my life.
Quality of life going forward is a huge part of any decision.

I get what you're saying about the thought of the myomectomy being a band-aid. It's why I said toodle-loo to my cervix after a bad pap years ago showed HPV. I didn't want to deal with the risk and the possibility of another surgery for precancerous cells (which turned out to already be there).

It's a heavy decision made worse by the lack of a guaranteed outcome. For me, it would come down to how done are you?

Do you want to go the myomectomy route and attempt to preserve as much of your reproductive system as possible (and there are huge pro's to this approach) knowing that there is a chance you'll be right back here in a few years? Or, are you done with it and willing to remove the offending organ and accept the risks that come with that decision?

Many women go on to live happy lives with both decisions. Like I said earlier, I would sit down with a notepad and do an honest with yourself risk/benefit analysis to see which you feel would bring you the best quality of life because you sound like you can't take much more of this emotionally.
  #18  
Unread 09-11-2012, 09:33 PM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

I want to offer support to the original poster-----I will support your decision either way, your questions are good. Please don't let yourself be pressured either way, just do what feels right for YOU. Good luck with your decision.
  #19  
Unread 09-12-2012, 09:05 AM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

  Quote:
Originally Posted by lrmctexas View Post
Quality of life going forward is a huge part of any decision. For me, it would come down to how done are you? .
Amen. I am pretty well done.
  #20  
Unread 09-12-2012, 09:25 AM
Re: Can't decide, help! Myomectomy + Ablation or Supracervical Hysterectomy

Cleo, I get that you are trying to help and support, and I appreciate that, I believe that is where you heart is. But take a look back at your posts and the tone you are taking with everyone. Also, you are painting me an an uninformed, uneducated person who is making a snap decision, and that could not be further from the truth. I have explored many other options first, such as UAE (not a candidate). I also sought out the coveted 2nd opinion. I have explored other avenues that...I won't post here because I that is not the point of my post...to debate what I have and have not researched.

So, the choice of Myomecomy vs. Hysterectomy is where I have ended up after months and months of research, appointments, etc...and no, my mind is not made up as you have insinuated, which is why I posted here a few days ago for help - - mostly to hear from others who have also been faced with this decision and what path they took, how it worked out. I was never looking for medical advise. I made that quite clear from the get go. That is an offense to the TOS (terms of service) anyway.

Last, so what if I just have "one" fibroid as opposed to more? This one complex transmural, wrapped around my uterus, bulging fibroid has ruined my sex life, my social life, time with my kids, my undergarments, and my digestive system. My lower back aches all the time, I have shooting pains down my leg, and my stomach is sticking out like I am 4 months pregnant. Not to mention the bleeding - - the constant, heavy, pervasive bleeding. To continually minimize my "one" fibroid in your comments is insulting. You don't know me, my case, and how my body is reacting to this. Why I feel I have to justify this, I don't know. But I had to get that out.

I came here for help, not to get stressed. I am sorry my **potential** hysterectomy might make you sad, but sometimes it's all about delivery of the message. I believe you are truly trying to help, though, for what it's worth.

I won't be replying back, I don't want to start a debate, this thread is already stressing me out enough as I mentioned...but I had to say my peace to try and end this back and forth that seems so combative.

If a moderator wants to close the thread, I am all for it.
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