HysterSisters Hysterectomy Support and Information
HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Special Needs > Endometriosis Support

HysterSisters answers for your Hysterectomy Questions With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get free booklets, access Hysterectomy Checkpoints and more. You are not alone. The HysterSisters are here for you. Join us today!

Reply

Can endometriosis come back after a complete abdominal hysterectomy? Can endometriosis come back after a complete abdominal hysterectomy?

Thread Tools
  #1  
Unread 04-25-2009, 05:16 PM
Can endometriosis come back after a complete abdominal hysterectomy?

I had a complete abdominal hysterectomy on May 20, 2008. I had endometriosis and PCOS. In the last few months I am starting to have pelvic pain again on the right side like I did before the surgery. I was wondering if anyone knew if the endometriosis can come back after a complete hysterectomy??
  #2  
Unread 04-27-2009, 11:51 AM
Re: Can endometriosis come back after a complete abdominal hysterectomy?



We actually have an article you might want to read titled "Can endo come back after a hysterectomy?"

The simple answer is "Yes!" If any endometriosis was missed during surgery, that endo can grow and spread. If you did not have a bilateral oophorectomy (BSO--removal of both ovaries), then you own ovaries are providing estrogen for any missed endo. If you did have a BSO and are using HRT, the estrogen in your HRT could be feeding the endo.

Unfortunately, some women have even found that after a BSO and without using HRT, they still have issues with endo. It can be very difficult to be 100% estrogen free because of plant estrogens in foods and supplements, our bodies converting dietary cholesterol to progesterone, then to testosterone and then on to estrogen, and our fat cells can create and store estrogen.

If you feel that you are having symptoms of endometriosis again, I would encourage you to keep a journal of all of your symptoms. You then need to sit down and discuss your symptoms with your doctor. There are a variety of options you could initially try such as progesterone, Lupron, and/or pain management. Your doctor will likely want to rule out any other health issues that might be going on.

Try not to stress about the situation! I know, easier said than done! Those of us with endo tend to automatically assume all our pelvic pain is endo again and sometimes there are other issues going on that can be treated!

Sending lots of gentle s and best wishes your way!
  #3  
Unread 04-29-2009, 06:37 PM
Re: Can endometriosis come back after a complete abdominal hysterectomy?

Hi all,

I also have suffered from endometriosis for years, and tried every available therapy and medication. I've finally decided to have the hysterectomy, and was told by my doctor, and have confirmed from research that the odds of re-occurance are about 30/70. Believe me, I went to many, many doctors trying to find one who would give me better odds...

That's a 70 percent chance that you will feel signifigantly better, and your pain greatly reduced or eliminated. Unfortunately, that means there's 30 percent of us out there who will still have problems. That fact has kept me from having the operation all this time. (Diagnosed 2002)
It's sort of a catch 22.
If you take out your ovaries and don't replace the estrogen, there's nothing to 'feed' the remaining endo cells that will almost always find a way to hide somewhere in your pelvis, even after a total hysterectomy.
However, without the estorogen that our bodies need for so many reasons in order to feel well and maintain a good quality of life, we may face problems that would make us feel worse than we already do...Ever tried Lupron? Like that.
If you DO choose to keep one or both ovaries, and/or use hrt, then you risk the chance to continue having pain from the cells that are left behind.
Even the most skilled surgeon can't be expected to find and remove every single bit of endo, especially for those of us who have it around our bowels and bladder, etc...It's nearly impossible.
Anyhow, my tvh is scheduled for 5-19-09. It's a gamble, and I'm planning on keeping one ovary. I figure that's kind of a compromise.
There's no way to know what the best option is to choose. I'm just gonna throw the dice and hope it works out. I can't just stay stuck because I'm afraid of making a mistake.
Best of luck to all of you!!!
Hope this helped....
~~ lily ~~
  #4  
Unread 04-30-2009, 06:05 AM
Re: Can endometriosis come back after a complete abdominal hysterectomy?

unfortunaltly YES it can come back..i had a vag. hyst in 03 they left my right ovary and in aug of 08 i had another surgery and YEP there it was again!! they found endo and adheshions.. i went to a endo specialist that CUT it out this time instead of burning it out..it's been almost 9 months and i'm feeling that OLD fimailar felling again.. my right side is hurting after sex and if i do alot of physical activity.. i don't know what kinda advice to give you b/c i'm facing the same delima. endo is a HORRIABLE thing to have to live with b/c in my opinion it never ever goes away!.hang in there and good luck
  #5  
Unread 05-02-2009, 01:18 AM
Re: Can endometriosis come back after a complete abdominal hysterectomy?

  Quote:
Originally Posted by lavenderlily13 View Post
If you take out your ovaries and don't replace the estrogen, there's nothing to 'feed' the remaining endo cells...
Well, this is not completely true! It can actually be very hard to be 100% estrogen free! For one, endometriosis has been known to create its own supply of estrogen. Two, fat cells can produce and store estrogen. Third, plant estrogens found in supplements and foods are believed to possibly be an issue. And finally, our bodies can continue to make estrogen by converting dietary cholesterol to progesterone, then to testosterone and then on to estrogen.

Definitely, the key is excision of the actual endometriosis. Some women will have great success with their local OB/GYN. Some are not. If at all possible, seeing an endometriosis specialist can offer possibly the best outcome.

S
  #6  
Unread 05-07-2009, 09:14 AM
Re: Can endometriosis come back after a complete abdominal hysterectomy?

I had my hyst on July 7, 2008. I was able to keep my right ovary. By november, I went back to the dr. because of the pain on the LEFT side, exactly where my ovary had been. on physical exam he could actually feel the scar tissue (pelvic adhsions) on the left side. The dr. did a CAT scan, and an ultrasound; as a result of these tests, he came back and said he wanted to remove the right ovary due to the size of the ovary, and the cysts surrounding it. However big it was, I don't know, but I had no pain, no discomfort ont he right side, just the left. So yes, the endo, the endometrial cysts, have "returned" to the right ovary, which I expected, just not so soon.

However, the biggest cause of my discomfort is the pelvic adhesions. The morning after the hyst, the doctor said he was surprised at the amount of pelvic adhesions wrapped around my bowels (and this is before the hyst!) He said if he hadn't been doing the davinci procedure, but a laparscopic, he would have had to abandon the lapascopic and go to a large incision. So I was very lucky in that respect.

I can't even run any more (every few weeks I will work out for a week or two, then will have to take two to three weeks off for the swelling, bloating, constipation and pain to subside - then I try again; it is a vicious cycle) After two weeks of light exercise 2 to 3 days a week, the discomfort becomes more painful on hte pain scale, plus all the bloating, constipation and swelling.

My husband does not understand my unwillingness to return to the doctor, since I am not eager to go under the knife again, plus, I used up most of my leave on my surg last summer, and will not get my "new" annual leave until july. He also doesn't seem to understand that the pain and discomfort is still cyclic, and is alleviated somewhat for a few weeks, until I start doing the things I like, such as exercising. Then it all comes back.

Sorry, I guess I needed to unload. My real point is to say that it is entirely possible that the pain is not endo, but pelvic adhesions. The pain i have now ont he ovary-free side is in the exact same location as pre-op, and I experience nearly the same, identical discomfort from beneath my left rib cage to the ovary(phantom). its wierd.

unfortunately, as with endo, there is no confirmatin on pelvic adhesions (scar tissue) unless an invasive surgery is performed, which results in more scar tissue.
  #7  
Unread 05-07-2009, 01:25 PM
Red face - Can endometriosis come back after a complete abdominal hysterectomy? Re: Can endometriosis come back after a complete abdominal hysterectomy?

I went to the gynocologist today for my annual papsmear and I explained how I started to have the pain back again on my right pelvic area. The doctor said that I had so much scar tissue with the hysterectomy that it is probably causing my pain again. She suggested I go have a adominal CT scan and possibly see a general surgeon but I think I am gonna put off any kind of surgery unless the pain is too bad to handle.

TAH/BSO May 20, 2008
Endometriosis, adhesions and PCOS
  #8  
Unread 05-26-2009, 11:25 AM
Re: Can endometriosis come back after a complete abdominal hysterectomy?

I have had a TAH and BSO in 2003 and 2004, I think my endo has grown back. All the same pains as well but I don't think I can handle it any more! Going to see a endo specialist this Thursday. WIsh you the best of luck (O:
Reply

HysterSisters Free Hysterectomy Booklet
What 250,000 Women Know About Hysterectomy with 50 pages of information, helpful tips and hints as you prepare and recover from hysterectomy through an organized timeline.




Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
5 Replies, Last Reply 03-07-2011, Started By TC2008
6 Replies, Last Reply 11-30-2010, Started By shimmer818
28 Replies, Last Reply 08-30-2010, Started By tchr012
35 Replies, Last Reply 10-09-2009, Started By abr33
4 Replies, Last Reply 09-22-2009, Started By Irish Maya
11 Replies, Last Reply 01-26-2009, Started By CapeCodder
6 Replies, Last Reply 10-31-2008, Started By marvaz524
4 Replies, Last Reply 10-25-2008, Started By leslo1377
12 Replies, Last Reply 06-18-2008, Started By dwitte1
4 Replies, Last Reply 12-01-2007, Started By mzintraining
0 Reply, Abdominal Hysterectomy Stories
3 Replies, Hysterectomy Recovery (post hysterectomy)
7 Replies, The Road Less Traveled
10 Replies, Hysterectomy Recovery (post hysterectomy)
11 Replies, The Road Less Traveled
7 Replies, Hysterectomy Recovery (post hysterectomy)
1 Reply, Hysterectomy Recovery (post hysterectomy)
5 Replies, Preparing for Hysterectomy (pre hysterectomy)
5 Replies, Hysterectomy Recovery (post hysterectomy)
2 Replies, Preparing for Hysterectomy (pre hysterectomy)


Hysterectomy News

October 25,2014

CURRENT NEWS

HysterSisters CheckingIn October - No Leaks For YOU
This month's newsletter features information for urinary incontinence including treatment options and pro-active prevent ... News Archive

LATEST BLOG POST:

Special Values

TODAY'S EVENTS

Calendar - Hysterectomies - Birthdays

UPCOMING EVENTS

Pre-Op Chat 9 pm eastern Oct.30

I am a HysterSister

HYSTERECTOMY STORIES

Featured Story - All Stories - Share Yours

FOLLOW US


Your Hysterectomy Date


CUSTOMIZE Your Browsing  


Advertisement


Featured Videos

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

Dr. Arnie Advincula answers questions about endometrios...

HysterSisters App Store Android app on Google Play


Advertisement