Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovaries? | HysterSisters
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Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovaries? Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovaries?

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  #1  
Unread 04-29-2017, 08:21 AM
Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovaries?

I have a week and a half to go before my scheduled hysterectomy and I have a million questions running through my brain. What I want to know specifically is of any success stories of people who have had hysterectomy for endometriosis and adenomyosis. All my reading on endo says hysterectomy is not a cure, so why do so many women have them for endo? Has it been effective for you, and did you keep your ovaries?
I am so scared of going through this surgery only for the endo to rear its ugly head again anyway. Also , the apparent risks of bilateral oopherectomy seem pretty scary, yet that is what my doctor thinks I should have. HELP
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  #2  
Unread 04-29-2017, 11:45 AM
Re: Success stories of hysterectomy for endometriosis and adenomyosis? Did you keep your ovaries?

  Quote:
Originally Posted by Too Young 82 View Post
All my reading on endo says hysterectomy is not a cure, so why do so many women have them for endo?
Because too many doctors and women assume it is a cure.

  Quote:
Has it been effective for you, and did you keep your ovaries?
My hysterectomy for endo wasn't successful until I had another lap with an endometriosis specialist. My OB/GYN could not remove all the endo, specifically what was on my bowel walls. The endo specialist was able to excise all the old and new endo and I have been endo pain and symptom free every since.

  Quote:
I am so scared of going through this surgery only for the endo to rear its ugly head again anyway. Also , the apparent risks of bilateral oopherectomy seem pretty scary, yet that is what my doctor thinks I should have. HELP
Both of those are concerns and I would suggest you address both and be sure about them before having surgery. If at all possible, try to see find an endometriosis specialist. You might want to read through some of our articles, too. Here are a few to get you started:
2 Reasons to Keep Your Ovaries - Even with Endometriosis
10 Things I Wish I Knew about Endometriosis
25 Health Risks Related to Oophorectomy and Surgical Menopause

  #3  
Unread 04-29-2017, 08:45 PM
Re: Success stories of hysterectomy for endometriosis and adenomyosis? Did you keep your ovaries?

Hi Too Young 82,

I had LAVH on 4/10 primarily for a huge ovarian cyst, fibroid tumors and cysts on my uterus with extremely painful, long periods and very heavy bleeding. Once the surgery was done I was informed that I also had endometriosis and adenomyosis.

I did agree to have everything, including both ovaries removed. However, I am 47 and did not have any concerns about doing HRT afterwards.

So far my recovery has been really good, no major issues. I have gone back to work half days and am slowly working my way back to my normal routine.

I hope none of my issues return, but I'm only 3 weeks in. What I can tell you is that having all those sickly parts removed has made me feel soooo much better! I have absolutely zero regrets and am looking forward to my life without the pain and suffering that had become a part of my everyday life.

Best of luck to you with your upcoming surgery!
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  #4  
Unread 04-30-2017, 12:16 AM
Re: Success stories of hysterectomy for endometriosis and adenomyosis? Did you keep your ovaries?

Thanks Weiser,
I can see that yours was one of those non-successful cases. My surgeon is however as close to an endo specialist as we get in Zimbabwe. She assures me that she will resect all endometriosis during the surgery, I am hoping this will be it for me. In previous surgeries my endo was fairly localised so Iam hoping that is still the case.
  #5  
Unread 04-30-2017, 12:19 AM
Re: Success stories of hysterectomy for endometriosis and adenomyosis? Did you keep your ovaries?

  Quote:
Originally Posted by sandi47 View Post
What I can tell you is that having all those sickly parts removed has made me feel soooo much better! I have absolutely zero regrets and am looking forward to my life without the pain and suffering that had become a part of my everyday life.
Thanks sandi47,
This is what I am hoping will be the case for me. I have suffered through many years of this and many surgeries and cannot even play with my children at this point!
  #6  
Unread 04-30-2017, 01:02 PM
Re: Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovari

From the way I was told by removing both ovaries it stops the growth of the endo and can cause the endo to shrink in most cases. Which is why I wanted it. If you leave any ovaries chances are any remaining endo left behind by your Ob can grow back due to your hormones. Also remember no HRT if you decide to remove your ovaries. My doctor told me no HRT, any remaining endo that wasn't seen could cause it to grow back.

33 trying to do the best I can to last as long as I can without hormones. Find a specialist please they will give you the best odds. Again this is just my personal understanding. Good luck!
  #7  
Unread 05-01-2017, 12:42 AM
Re: Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovari

Thanks butterflywisper. How is it going for you without your ovaries or hormones at such a young age? How long ago did you have the surgery?
The doctor I have is the closest we have to an endo specialist in Zimbabwe, but I do plan to have a serious chat with her in my final pre-op appointment on Thursday. I have done alot of reading and despite the risks, I think my ovaries need to go to avoid further surgeries, I also want to ask about the possibility of lupron etc after surgery to shrink any remaining endo faster.
  #8  
Unread 05-01-2017, 07:44 AM
Re: Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovari

A great idea is to check your family history of menopause and pre-menopause if you can. This will be a great predictor in what is expected for you as you continue to pursue your treatment options. For me, no one in my family had a hard time with menopause, and I consider my symptoms very mild and tolerable so far. At week 4 I had started basic issues with (Hot Flashes, Insomnia, Migraines, lightheadedness, Mild changes in mood) are my most common symptoms. As far as my anxiety and depression, it got much better than it had been but this is only due to the hormonal issues I had. So please keep in mind that if you have anxiety and depression along with other mental health issues these problems may get worse for a while if they are not directly linked to your hormones as you go through the menopause or pre-menopause process.

At week 7 I’m still in pain, but I am learning this is due to extensive work that I had done and each week the pain is getting better and better. I also have a slightly longer recovery process than what was expected due to constant infections. HeHe The endo caused me to have major immune system issues as well as stomach issues. So this process has been up and down for me. But you never know by week 7 you may not experience any pain, or mild occasional pain. Remember to laugh, take it easy, and my most important advice is to do as the doctor tells you to. You do not want to hurt yourself so make sure you fallow all the rules they set for you, as to avoid issues later! Hope this helps, good luck!

Also try not to panic, at times during your recovery you may find yourself freaking out over the different changes your body is going through, what I learned is when in doubt call the doctor. HaHa I try so hard not to freak myself out, but I think all of us have those moments.
  #9  
Unread 05-01-2017, 09:04 AM
Re: Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovari

  Quote:
Originally Posted by Too Young 82 View Post
Thanks Weiser, I can see that yours was one of those non-successful cases.
Depends on how you look at it. If my OB/GYN could have removed endo from my bowel wall, I would have been in great shape. When I saw the specialist, he was impressed by my OB/GYN's prior work. It was the bowel endo that was the problem for me, and most surgeons aren't able to remove that type of endo.

  Quote:
My surgeon is however as close to an endo specialist as we get in Zimbabwe.
That sounds promising. Current circumstances do play a role in the decisions we make. Mine made it so I had surgery with my local OB/GYN even though I knew he was going to leave endo behind on my bowel walls. I didn't feel I had other options at the time. Traveling to and paying for a specialist was out of the question, but I do wish I had at least checked with some gynecologic oncologists in my area as that type of surgeon can sometimes remove endo from the bowel walls because of their skills with treating cancer.

  Quote:
Originally Posted by Butterflywisper View Post
From the way I was told by removing both ovaries it stops the growth of the endo and can cause the endo to shrink in most cases.
It's not that simple. Endometriosis can exist without ovaries or using HRT and recently a couple members have shared their experience with having surgery to have extensive endometriosis removed despite having no ovaries and not using HRT. For one endometriosis, can create its own estrogen. And once surgical menopause hits, it is serious and can impact your health from head to toe. Estrogen plays a role in just about every cell in a woman's body, and without it there's more that happens than annoying symptoms like hot flashes. It affects your heart, bones, brain, and so much more. It puts those of us with endo in a tight spot, especially the younger we are and the farther from natural menopause.

(((Too Young 82))), I think talking to your doctor on Thursday sounds like a great idea and would suggest writing down all your questions and concerns and taking them with you to your appointment.

It's complicated when it comes to endo and no two of us will have the same experience or make the same decisions. One of the most important things is that you make an informed decision for you weighing all your own pros and cons. Personally, after extensive research, I don't recommend Lupron or having the ovaries removed. But others have different opinions for different reasons. We all have to try to do what we feel is best for us, knowing we are the ones who have to live with the outcome -- good or bad.



  #10  
Unread 05-01-2017, 09:29 AM
Re: Upcoming hysterectomy 5/10: Success stories of hysterectomy for endometriosis & adenomyosis? Did you keep your ovari

Thanks Weiser, yes, my current circumstances make this my only real option, but I have a boatload of questions ready for Thursday and will be taking my hubby with this time so no questions get fobbed off without a proper answer. Unfortunately there is a slight language barrier with my doctor, but I will overcome!
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