Hysterectomy for stage IV endometriosis | HysterSisters
HysterSisters Hysterectomy Support and Information
Advertising Info HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Special Needs > Endometriosis Support


HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.

Our community is filled with women who have been through the Hysterectomy experience providing both advice and support from our active members and moderators.

HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.

With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.

You are not alone. The HysterSisters are here for you. Join us today!
join HysterSisters for hysterectomy resources and support
Reply

Hysterectomy for stage IV endometriosis Hysterectomy for stage IV endometriosis

Thread Tools
  #1  
Unread 07-26-2020, 08:13 AM
Hysterectomy for stage IV endometriosis

Hello,
I am 41 and have been having bad periods ever since I was 10 when I started having one. I was diagnosed 10 years ago with stage IV Endometriosis when I had laparoscopic surgery for cysts on both ovaries. The Doc removed the right ovary and tube. I have tried acupuncture, physical therapy, eating a healthy diet and herbs. I am now trying Mercier massage. I have been on and off continuous birth control pills. When I go off birth control pills the periods are just too painful and create anxiety leading up to them. I am currently on the birth control pill and am still having a lot of pain. I have an Endometrioma on the left ovary (3cm) and my uterus is stuck to my rectum. I do not plan on having kids and never have. Other than this issue, I am healthy. I would love to get this hysterectomy and ovary removed. I think emotionally it would be good. My concern is that it is a permanent solution and I realize there could be other issues with having these body parts gone. So, I am trying to weigh how bad I am feeling now vs. how I might feel after these body parts are removed. One concern is if both ovaries are gone, how will I react to the HRT? Will I have issues and pain with scare tissue later on? I don't feel any attachment to the ovary or the uterus, in fact I think I would feel relieved if they were gone.

Thank you in advance for any comments.
Amy
MY BADGES:
Sponsored Links
Advertisement
 
  #2  
Unread 07-28-2020, 08:54 PM
Re: Hysterectomy for stage IV endometriosis

Hi Amy,
I am 40 and had a complete hysterectomy 9 months ago due to stage 4 endometriosis and an Endometrioma the size of a grapefruit (8cm). I had a laparoscopic procedure 6 months prior to to the hysterectomy to remove the Endometrioma, but the doctor was unable to safely remove it due to it being attached to my other vital organs. She opted to drain it and complete lysis of adhesions and give me a 3 month dose of Lupron immediately post-op to see if that would keep everything at bay because I did not want to have to have a hysterectomy. I did well for ~ 6 months, but after adding a low dose of birth control back, my blood pressure became extremely high and it became too dangerous for me to continue it and the pain was beginning to come back. I finally decided to have a hysterectomy and due to the severity of the endometriosis/Endometrioma my ovaries were not salvageable. The Endometrioma had started filling up and growing again, but thankfully due to the lupron, it had walled itself off right at my intestines and was no longer attached. My doctor had a GI surgeon on standby in case it was still attached and I needed more extensive surgery, but thankfully she didn’t end up having to call them. However, due to the issues I had, the surgery ended up being an open procedure instead of laparoscopic. So I had the laparoscopic holes and a pretty big incision that needed healing, but everything healed up very well. I have to say at this point in time in life, it was by far the best decision I’ve ever made. I had forgotten what it was like to not be in severe pain every day of my life and I haven’t needed anything for pain since the surgery!! I feel like I was given a new lease on life! I am on HRT and that seems to be going very well. My blood pressure is no longer an issue and I was able to come off of that medication.
Best of luck to you as you make your decision and never be afraid to get more than one opinion before making your final decision.
  #3  
Unread 07-28-2020, 09:12 PM
Re: Hysterectomy for stage IV endometriosis

Thank you Allison for sharing your story and experience! Glad it turned out positive for you!
Sponsored Links
Advertisement
 
  #4  
Unread 08-01-2020, 01:59 PM
Hysterectomy for stage IV endometriosis

Same here, such bad painful periods and long too! I went for years without seeing a dr, finally the paint kept going and going and i was in constant pain. Finally had an ultrasound at age 39, never had kids. My ovaries were HUGE and kissing and were also stuck to my uterus. My dr said she didnt know how I functioned daily with that in me.

It was one of her most complicated surgeries and it took 6 hours. She has to burn away so much endo to get to my organs. I watched my surgical video and WOW!! It was a mess! One ovary burst during surgery.

Anyway, surgery is not a a cure for endo BUT i feel 100% better!! I have not felt this amazing since the age of 16! No more periods, no more ovulation pains! Absolutely no pain!! Maybe some day i will have endo pain again but she removed almost all of it. So theres not much to grow other than a tiny dime sized spot she couldnt reach. My surgeon is an endo specialist and i recommend you also find a specialist.

I always joked about having my uterus and ovaries ripped out because i hated them so much but never expected it to actually happen! I am so glad i had a hysterectomy!! So so so happy! Its not a cure but its still a miracle!!

HRT is a breeze for me, no issues!! Im on a compound cream and I feel no menopause symptoms whatsoever. Its pretty darn awesome so far!

  Quote:
Originally Posted by SeaWave20 View Post
Hello,
I am 41 and have been having bad periods ever since I was 10 when I started having one. I was diagnosed 10 years ago with stage IV Endometriosis when I had laparoscopic surgery for cysts on both ovaries. The Doc removed the right ovary and tube. I have tried acupuncture, physical therapy, eating a healthy diet and herbs. I am now trying Mercier massage. I have been on and off continuous birth control pills. When I go off birth control pills the periods are just too painful and create anxiety leading up to them. I am currently on the birth control pill and am still having a lot of pain. I have an Endometrioma on the left ovary (3cm) and my uterus is stuck to my rectum. I do not plan on having kids and never have. Other than this issue, I am healthy. I would love to get this hysterectomy and ovary removed. I think emotionally it would be good. My concern is that it is a permanent solution and I realize there could be other issues with having these body parts gone. So, I am trying to weigh how bad I am feeling now vs. how I might feel after these body parts are removed. One concern is if both ovaries are gone, how will I react to the HRT? Will I have issues and pain with scare tissue later on? I don't feel any attachment to the ovary or the uterus, in fact I think I would feel relieved if they were gone.

Thank you in advance for any comments.
Amy
MY BADGES:
  #5  
Unread 08-01-2020, 02:23 PM
Re: Hysterectomy for stage IV endometriosis

I have had a total hysterectomy for endo. 6 yrs ago. At the time I thought it would cure endo. No one told me that it would not. So while i am still having off/on problems, it is not even CLOSE to what it was. I would call it more discomfort now, not pain, and it is not everyday. I can pretty much live with it now.
However, surgical menopause symptoms were pretty strong-night sweats, constant hot flashes and in between freezing cold (the A/C would dry my sweat instantly and make me really cold.)
I found out the hard way that endo. feeds off of estrogen. I found out when I ate flaxseed and got very sick. Research showed that flaxseed is very high in natural estrogen that our bodies can use. I went to my ob/gyn who said that some endo. makes its own supply of estrogen and feeds off of it. First he gave me an aromatase inhibiter, but when I read the side effects I opted out. Sounded too much like chemotherapy. Then he gave me some bioidentical hormones w/ estrogen that sent me through the roof in pain. After that I told him I was scared of estrogen. I don't know why he gave it to me if he knew that endo. feeds off of it.
So just letting you know that a hysterectomy will not cure endo. And Estrogen will feed it. SOme herbs, like black cohosh, could cause problems too, from what I've read, "if you have a hormone sensitive problem like endometriosis, do not take" (webmd). So I've cooled my surgical menopause symptoms with ice cream, and two fans on me at night and i'm good.
For me it was a good decision, because even though i still have some problems, they are nothing compared to what it was.
  #6  
Unread 08-04-2020, 06:21 PM
Re: Hysterectomy for stage IV endometriosis

Thank you all for sharing your stories. It is good to know that there are woman out there who are happy about the outcome of this surgery.
Reply

booklet
Our Free Booklet
What 350,000 Women Know About Hysterectomy: Information, helpful hints as you prepare and recover from hysterectomy.
Answers to your questions
Register




Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
1 Reply, Last Reply 06-25-2016, Started By 99luftballons
1 Reply, Last Reply 11-26-2014, Started By ABM
15 Replies, Last Reply 10-12-2014, Started By ajodasso
2 Replies, Last Reply 09-26-2014, Started By JennBabe
6 Replies, Last Reply 03-22-2014, Started By Carlybeth
3 Replies, Last Reply 03-10-2014, Started By SinglewithEndo
0 Reply, Started By Calie
4 Replies, Last Reply 09-22-2013, Started By londonk
4 Replies, Last Reply 04-18-2013, Started By clarity7
12 Replies, Last Reply 05-27-2008, Started By suzyqsings
2 Replies, Preparing for Hysterectomy (pre hysterectomy)
8 Replies, Preparing for Hysterectomy (pre hysterectomy)
4 Replies, Preparing for Hysterectomy (pre hysterectomy)
6 Replies, Preparing for Hysterectomy (pre hysterectomy)
0 Reply, Abdominal Hysterectomy Stories
5 Replies, Cancer Concerns - GYN
6 Replies, Hysterectomy Options and Alternatives
5 Replies, Hysterectomy Options and Alternatives
11 Replies, Hysterectomy Options and Alternatives
3 Replies, No Uterus - No Ovaries - Yes HRT - Surgical Menopause



Advertisement

Hysterectomy News

August 12,2020

CURRENT NEWS

HysterSisters Takes On Partner To Manage Continued Growth And Longevity
I have news that is wonderful and exciting! This week’s migration wasn’t a typical migration - from one set ... News Archive

TODAY'S EVENTS

Calendar - Hysterectomies - Birthdays


Request Information


I am a HysterSister

HYSTERECTOMY STORIES

Featured Story - All Stories - Share Yours

FOLLOW US


Your Hysterectomy Date


CUSTOMIZE Your Browsing  


$vbulletin->featuredvideos is not an array!
Advertisement


Advertisement