Endometriosis - need input on what to do | 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

Endometriosis - need input on what to do Endometriosis - need input on what to do

Thread Tools
  #1  
Unread 08-28-2021, 06:45 AM
Endometriosis - need input on what to do

This endometriosis and Adenomyosis is so debilitating. I just want to die! Idk whether to get a hysterectomy and I am about 6years away from menopause. I can't focus, constantly weak,no sleep, worried, stress, you name it. Any feedback if I should or shouldn't? The endo is all over my uterus, rectum,and ovaries.
Sponsored Links
Advertisement
 
  #2  
Unread 08-28-2021, 08:44 AM
Endometriosis - need input on what to do

It all depends on your comfort level and pain level to determine whether you want the surgery. I’ve been doing a lot of research and reading about women’s health. I happen to come across a video from a lady who wants to share her story with the world about her endometriosis story. Unfortunately she has endometriosis cancer and had she gotten her uterus removed early on, she might not have endometriosis cancer. I thought I take the opportunity to share her story here for awareness. I’m not able to post the link here but if u Search on YouTube - “endometrial cancer - the hidden signs,” you’ll find the video. I’m
Not a dr so I don’t know exactly. I would suggest getting a 2nd, 3rd or even 4th opinion if you don’t know what to do. Only after gathering facts and hearing from different professionals, you would have more information and know what to do. I learn ea dr is different and are trained differently so when you seek second opinions it can only increase your knowledge and give you the power to move forward. I have mild endometriosis so it didn’t bother me as much but that doesn’t mean it won’t bother me in the future. I hope this helps you or gives you inspiration to get checked or take action as necessary. May you get well soon.
  #3  
Unread 08-29-2021, 05:24 PM
Re: Endometriosis - need input on what to do

I didn't watch the video, but endometrial cancer is different from endometriosis. I had endometriosis and adenomyosis plus fibroids, and my daily pain level was high, so high I was only functioning at about 15 percent. I figured that was no way to live, so I went forward with the hysterectomy, as hormonal meds weren't helping and were actually making it worse.

The question for you is the same: Do you want to live that way, or do you want to move forward with surgery? I am 51. I've read that the endo can recede after menopause "for most women" (if HRT isn't used), but sometimes it doesn't go away. (Not sure what the adeno does after menopause.) If endo is on your rectum, that could eventually cause functioning issues there too, I'd think. Does sound like maybe you need to talk about it more with your docs. Endo is tricky for sure, either way.
Sponsored Links
Advertisement
 
  #4  
Unread 08-29-2021, 06:12 PM
Endometriosis - need input on what to do

Thank you so much for the info! The things women go through is unbelievable! I'm even scared that I won't have my libido back.
  #5  
Unread 08-31-2021, 05:04 PM
Re: Endometriosis - need input on what to do

I can’t tell you what to do, but I struggled the same way. For about 8 years I dealt with fibroids and endometriosis. My doctor told me it would be better after menopause also. I waited and waited but menopause never arrived. At 52 I had the hysterectomy. It was the best thing I ever did. I think because I felt so bad before the surgery my recovery was easy. I know it’s not like that for everyone but it was for me. I wish I hadn’t waited so long.
Good luck!
  #6  
Unread 08-31-2021, 05:22 PM
Endometriosis - need input on what to do

Hello

Thanks for the encouragement. I'm just nervous about how to feel after. My libido, etc.
  #7  
Unread 08-31-2021, 05:28 PM
Endometriosis - need input on what to do

  Quote:
Originally Posted by Akatude6 View Post
This endometriosis and Adenomyosis is so debilitating. I just want to die! Idk whether to get a hysterectomy and I am about 6years away from menopause. I can't focus, constantly weak,no sleep, worried, stress, you name it. Any feedback if I should or shouldn't? The endo is all over my uterus, rectum,and ovaries.
I wish I hadn't waited and done it years earlier. Yes, the first 4 weeks suck, the next 4 not that bad but 10 weeks out? Best decision EVER!
The anemia and constant bleeding for last 5 years was ridiculous but I was afraid of surgery. It was a total relief to have it over with and I got TWO bathroom cabinets extra now (not full of every type of period product!)
Get a second or even third opinion from doctors you trust them make time to get it over with. I'm on 1mg estrogen pill daily and no hot flashes at all!
  #8  
Unread 08-31-2021, 05:30 PM
Re: Endometriosis - need input on what to do

I'm not sure how you have lasted for so long. I knew I had a fibroid and suspected endometriosis, but didn't know about the adenomyosis until my hysterectomy, but the pain over the past 2 years kept increasing to the point that I had no quality of life for at least a week a month. I'm 51 and kept trying to hold out for menopause and then it became too much. My hysterectomy was in May 2021 and I had an easy recovery, but can honestly say that I wish that I'd done it earlier. The pain in the recovery room was less than I was having monthly, so I also think that factors in to how I felt about my recovery.

As someone else said, the question is how much the pain is affecting your quality of life. I was nervous about having the surgery and whether it would resolve things, especially since I've had ovarian pain, bursting cysts, and adhesions since I was 22. The hardest part after surgery was restricting myself from overdoing it since I felt so much better. I've had several other women who history of issues tell me how much I'd love it after surgery, and I have to say they were right.
  #9  
Unread 09-01-2021, 06:51 AM
Re: Endometriosis - need input on what to do

I had very extensive endometriosis and adenomyosis. I had a hysterectomy at 46 and it was life-changing. I've suffered from it since I was 16 and began experiencing IBS at around age 18. It turns out I had endo on my colon as well. The IBS is about 98% gone; it only flares if I make very poor eating choices combined with a lot of stress. I wish I had undergone the surgery years earlier (and had found my current doctor 3 doctors sooner). Ovaries looked fine so they were left in place. I also had genetic testing before surgery to look for cancer markers to guide the choice on ovaries.

Not being in constant pain, not to mention not experiencing painful intercourse, made a huge difference in my marriage. I've also started using hormone pellets the last 2 years and I have been very happy with it.

Obviously, you have to make your own informed choice. I had outpatient, minimally invasive surgery (NOT Davinci) and I was able to stop using prescription pain meds on day 3. Everyone's mileage may vary, but my only regret was that I hadn't had the surgery sooner.

Hope this helps and good luck.
  #10  
Unread 09-01-2021, 10:35 AM
Re: Endometriosis - need input on what to do

I wasn’t diagnosed with endometriosis until they finally went in to do my hysterectomy. It was super extensive, to the point that they changed from laparoscopic to a bikini cut surgery. I did have the uterus, tubes, and ovaries removed as well. I can’t tell you how much better I feel now. I went from pain most days, and debilitating pain during my period, to almost no pain at all. I wasn’t even quite 40, so estrogen replacement is strongly recommended, but I doubt it will be at 50.
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
8 Replies, Last Reply 05-27-2020, Started By Ineedabeer
8 Replies, Last Reply 02-07-2013, Started By frostedflakes
23 Replies, Last Reply 12-14-2011, Started By Endo~Hope
3 Replies, Last Reply 03-15-2010, Started By missyrg
4 Replies, Last Reply 09-13-2009, Started By Faithsister413
4 Replies, Last Reply 07-03-2009, Started By hopeahead
2 Replies, Last Reply 11-20-2008, Started By stephaniede
12 Replies, Last Reply 07-29-2008, Started By sls1970
2 Replies, Last Reply 05-24-2008, Started By Margarine
16 Replies, Last Reply 01-12-2008, Started By househippie
19 Replies, Preparing for Hysterectomy (pre hysterectomy)
0 Reply, Endo/Adeno: Stories of Triumph Over Pain
5 Replies, No Uterus - No Ovaries - Yes HRT - Surgical Menopause
5 Replies, Preparing for Hysterectomy (pre hysterectomy)
8 Replies, Pelvic Floor and Bladder Issues
3 Replies, Hysterectomy Options and Alternatives
2 Replies, No Uterus - No Ovaries - Yes HRT - Surgical Menopause
1 Reply, No Uterus - No Ovaries - Yes HRT - Surgical Menopause
10 Replies, Preparing for Hysterectomy (pre hysterectomy)
6 Replies, The Road Less Traveled



Advertisement

Hysterectomy News

October 27,2021

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