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Endometriosis AFTER Hysterectomy Endometriosis AFTER Hysterectomy

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  #1  
Unread 07-23-2009, 06:17 PM
Endometriosis AFTER Hysterectomy

I was diagnosed with endometriosis in my late 20's, then had a laparoscopy in 1999 after a cyst burst on one of my ovaries and the MDs lazered all the endo they could find at the time. In 2001 the MDs put me on BC to control the bleeding and in 2004, I was switched to Seasonale, which seemed to work for awhile. I am now 40 and 8 days post-op TVH; kept both my overies.

I thought I should have started feeling better two days ago, but then I started putting things together (heightened sense of smell, sex dreams, tender breasts) and realized that if I still had my uterus I would be on my period. It clicked today that the painful twinges I feel in certain places were there before the TVH. My MD and I had talked about lazering the endo, but she said that with both the TVH and bladder repair it would be too much for me. After the surgery, she told me that the endo didn't look too bad, but reminded me that because I still have my ovaries, I would likely feel discomfort in those areas and still have PMS as usual.

I would love to hear from others out there who have similar situations. How you deal with it? My MD had told me that the endo should not grow or spread anymore with my uterus out, but I have read about others who say their endo has gotten worse over time. Is there more information about this out there. What can I expect? Do PMS symptoms worsen or go away?
  #2  
Unread 07-24-2009, 09:42 PM
Re: Endometriosis AFTER Hysterectomy

Hello I am scheduled for a TAH/BSO on August 4th I am scared but my Dr. is recommending all of that because I have endometriosis and she said that she doesn't want to leave any ovaries because a year or two later she could possibly be in there removing them because it is likely to come back. I hope you get more answers but this has confirmed for me to get the BSO part.
  #3  
Unread 07-24-2009, 09:53 PM
Re: Endometriosis AFTER Hysterectomy

The way I understood it is that if you still have your ovaries (I do) that the endo can still grow until your ovaries stop working. Then when you are not producing those hormones, it should stop growing & hopefully shrink away. That is why some women can not use hormones. I still have a little endo that my doctor couldn't get without creating more problems but he said that it shouldn't cause any problems until I hit menopause.

I still have a regular cycle (with out the bleeding). I feel when I ovulate & can tell when it would be that time of the month. Each month got a little better. I guess for some it can all get worse but for me I am doing pretty good now. Best wishes to you!
  #4  
Unread 07-26-2009, 01:38 AM
Re: Endometriosis AFTER Hysterectomy



Unfortunately, there are no easy answers when it comes to endometriosis! There also is no one size fits all answer! And, one will find that not even all doctors will offer the same answers nor believe the same things when it comes to endometriosis! Frustrating, I know!

Briefly, let me share with you my personal experience and what I have learned through years of research!

First, I had my hysterectomy for stage IV endometriosis when I was 25 years old. I kept both of my ovaries for a variety of reasons. As much endo as possible was removed but the endo on my bowel walls was left behind. While I did not deal with endo pain prior to my hysterectomy, I started dealing with twinges and pulling and pains following my hysterectomy. This pain slowly but steadily increased for the next several years.

I has a laparoscopy with an endometriosis specialist seven years after my hysterectomy. He was able to excise the endometriosis that had been left on my bowel walls. He also excised all the new endometriosis that I had.

Because I have both of my ovaries, I continue to have PMS. Some months are far worse than others! My symptoms can come and go and not be the same two months in a row. If it were not for migraines, some type of hormone treatment could help me with the PMS symptoms as well as help keep endo at bay.

Now for what I have learned by reading, researching, and talking to my own doctors. Any endometriosis that is left in the body can grow and spread, no uterus necessary! Having or not having a uterus isn't going to affect what has already implanted outside of the uterus! A hysterectomy is not a cure for endometriosis. Additionally, an oophorectomy (removal of the ovaries) is not a cure for endometriosis. The key is the removal of the actual endometriosis implants!

When it comes to treating endometriosis, the best advice I can give a woman is to see an endometriosis specialist. They are the ones who day in and day out treat women with endometriosis. They are the ones who tend to have exceptional surgical skills and abilities when it comes to treating endometriosis. They see how endometriosis affects vast numbers of women with endometriosis and what treatment options work or fail for those women.

No two of us will make the same decisions, nor will we have the same outcomes, because endometriosis is tricky and does affect us each differently. But we each should learn all we can about this condition and seek additional medical opinions to help us determine what is best for us!

Try not to worry and stress! While it is possible that your remaining endo will continue to cause you pain issues and the endo could grow and spread, it is also possible that you will do well and your pain and symptoms and will never be any worse than they are right now! Better yet, some (or all) of what you are feeling right now could be healing issues that could go away completely with some more time!

Remember, you are a new so your goal right now is to let your body heal and recovery from surgery! Get plenty of , lots of fluids, and don't forget to . Don't borrow trouble or waste a good worry!

Wishing you all the best!
  #5  
Unread 07-26-2009, 01:54 AM
Re: Endometriosis AFTER Hysterectomy

  Quote:
Originally Posted by Yoyis View Post
I was diagnosed with endometriosis in my late 20's, then had a laparoscopy in 1999 after a cyst burst on one of my ovaries and the MDs lazered all the endo they could find at the time. In 2001 the MDs put me on BC to control the bleeding and in 2004, I was switched to Seasonale, which seemed to work for awhile. I am now 40 and 8 days post-op TVH; kept both my overies.

I thought I should have started feeling better two days ago, but then I started putting things together (heightened sense of smell, sex dreams, tender breasts) and realized that if I still had my uterus I would be on my period. It clicked today that the painful twinges I feel in certain places were there before the TVH. My MD and I had talked about lazering the endo, but she said that with both the TVH and bladder repair it would be too much for me. After the surgery, she told me that the endo didn't look too bad, but reminded me that because I still have my ovaries, I would likely feel discomfort in those areas and still have PMS as usual.

I would love to hear from others out there who have similar situations. How you deal with it? My MD had told me that the endo should not grow or spread anymore with my uterus out, but I have read about others who say their endo has gotten worse over time. Is there more information about this out there. What can I expect? Do PMS symptoms worsen or go away?
I just had my Hysterectomy and kept my ovaries July 21st. I also have endometriosis and will need some support with this. I had the anterior and posterior repair with bladder tack. I am 32 years old. I would love to stay in contact with you to compare our progress.
  #6  
Unread 07-28-2009, 02:20 AM
Re: Endometriosis AFTER Hysterectomy

Hi there!! I myself am 40yrs and diagnosed by a Lap last August to have Stage IV Endo. I am being booked for a complete hysterectomy this Oct. I'd have to say I am really surprised that your doctor left your ovaries in, when you have a history of Endo because ovaries produced Estrogen and it's the Estrogen that feeds the Endometriosis. That is why even a hysterectomy is not a sure cure for Endo because any Estrogen in your system can inflame the Endo. My Gyn doc put me on Lupron after my Lap to try and surpress the Endo, mind you, I have a severe case of Endo, and it sounds like yours isn't too bad. Lupron puts you into false menopause and shuts the ovaries down and has completely taking my pain away until I have the hysterectomy......
Hang in there!! Endo is a life long sentence.....
  #7  
Unread 07-28-2009, 11:39 AM
Re: Endometriosis AFTER Hysterectomy

Thank you for the information. You are right, my endo is not nearly as bad as many other people that are in my family. My gyn did tell me that I will need to continue with birth control pills until I hit menopause though. I am so sore right now, but hanging in there. I really insisted on keeping my ovaries if there was no sign of cancer. Hopefully it will work out well for me. On the one hand I could develop issues from the BC/ovaries and on the other hand I could have had issues with HRT. It gets very hard to decide what is best at times. My biggest issue so far since the Hysterectomy has been my catheter, I still have it I should get rid of it by 8/5.
  #8  
Unread 07-28-2009, 11:52 AM
Re: Endometriosis AFTER Hysterectomy

Removing the ovaries is not a cure for endometriosis nor is it the right option for everyone. For one, the estrogen produced by the ovaries is essential for the overall health of a woman even though that same estrogen does fuel endometriosis. Having endometriosis does not dictate an oophorectomy.

All of the pros and cons have to be weighed for each woman when it comes to an oophorectomy (removal of the ovaries) to determine what is best for her. When those pros and cons are considered, the skill of the surgeon also has to be taken into consideration as the more endometriosis one's surgeon can remove, the better. If a surgeon is not going to remove endometriosis implants, removing the ovaries and uterus could offer little relief from the actual endometriosis issues.

Also, women have to consider that there are other way for the body to provide estrogen to fuel endo without the presence of ovaries and even if no HRT is used. Yes, there are women who deal with endometriosis recurrence even after a hysterectomy, an oophorectomy, and without using any form of HRT. Fat cells can produce and store estrogen. Plant estrogens (such as in black cohosh, yams) are believed to be an issue for some women. Our bodies can continue to make estrogen by converting dietary cholesterol to progesterone, then to testosterone and then on to estrogen. In fact, endometriosis itself has been known to create its own supply of estrogen!

The key for treating endometriosis is not to remove organs from the body, but to remove the actual endometriosis itself!

I had my hysterectomy for stage IV endometriosis but it was still best for me to retain my ovaries. This was the conclusion of not only my own GYN, but also my world renowned endometriosis specialist.

Again, there is no one size fits all answer and we are not all going to make the same decisions, especially since we will not all be seeing the same doctors and/or specialists.

I have done very well since my excision surgery with my endometriosis specialist and we have high hopes that I will do well for years to come, ovaries and all!

  #9  
Unread 07-31-2009, 03:57 PM
Re: Endometriosis AFTER Hysterectomy

Thanks to all for responding, especially you Weiser, you've provided a wealth of information. Just to make things a little clearer ; in my case I had a hysterectomy because of the adenomyosis (also a prolapsed uterus). My uterus was basically deteriorating/coming apart and although I had most of the bleeding and pain under control, I decided it was time to part with it. The MDs had tried to convince me to get rid of it ten years ago, but I wanted to wait as long as possible, or until medicine had progressed enough to give me more options.

My mother had a ton of problems and also had endo. She had a hysterectomy at 35 and her ovaries were removed at that time, went into menopause early and had a hell of a time. The MDs had her on all kinds of HT for many years. At 50 she was diagnosed with breast cancer, and died three years later. It was horrible watching her go through all of that, especially the end. I was (and am) convinced that the HT was a big part of it.

Several MDs over the years have agreed with me that keeping my ovaries and letting nature take its course was the best thing for me, especially knowing my medical history. One of them pointed out that stress plays a big part and if keeping my ovaries would give me piece of mind, then it would be worth it. My (present) MD indicated that my endo does not appear to be too bad and she thinks it's probably because of the BC. She had also suggested (two years ago) that I start taking ibuprofen the day before my period to help with the bleeding and the cramps, something I found to be very helpful. Unfortunately it does a number on your stomache, so I had to be careful about using it. We both figure if the endo gets bad enough I can have it removed down the road.

For the last five years because of the adenomyosis and prolapse, I have been unable to exercise normally. The only thing I could do was low impact such as swimming or rowing. We actually bought an erg (rower), something my DH could use also, since he is a rower. Still, I was putting on weight and I missed all the activities that I used to do with my kids like DDR (dance, dance, revolution), horseback riding, running, skiiing, etc... (all the sports I had to give up). I'm really looking forward to doing all those things again once I heal fom my TVH.

I would definitely like to learn more about possibly controlling the endo with diet and if some foods really are better than others. I read somewhere that Japanese women have few female problems and it's due to the amount of soy they eat. Don't know if it's true or not, but it might be worth trying. I would like to learn to control my endo "naturally".

For me having the hysterectomy was a choice to improve the quality of my life, but keeping my ovaries for my health. I hope that makes sense.
  #10  
Unread 07-31-2009, 04:12 PM
Re: Endometriosis AFTER Hysterectomy

I am sorry for all your mother went through. My grandmother had a hysterectomy and oophorectomy and had a horrible time with HRT. She eventually had a double mastectomy for pre-cancer issues. My mom believes my grandmother's issue was related to estrogen but her records were purged so we don't have the details and facts we need to be sure.

Trying the various diets for endometriosis are certainly worth a try! For one, being as healthy as we can be should put us ahead of the game! My endometriosis specialist actually likes women to consider a whole body wellness program for that reason!

Before considering adding soy to your diet, you might want to do some research. Soy contains plant estrogens which are believed by some to be an issue for those of us with endometriosis. In fact, when I am having major PMS issues, my doctor has cautioned me to avoid foods with plant estrogens (soy, yams) as they can increase the estrogen dominance symptoms! Since your doctor did not remove any of your endo, you don't want to add any additional estrogen to your body to go along with what your ovaries are producing! You may even want to consider using some type of progesterone (my doctor has suggested natural progesterone cream) to help keep the endo at bay and help with your PMS issues.

I wish you all the very best as you begin to return to your "normal" life! I do hope you are able to successfully resume all those activities you have had to avoid for the past years!

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