TAH for endometriosis: successful?

I am 30 and facing TAH(ovaries too) due to severe endo that I have had since I was 17. Surgery will be in May 2005 though I haven't agreed to a date yet. I wonder if anyone who has had hysterectomy for endo could talk about their experiences? Did it come back? Were there more surgeries? Success stories too would be encouraging. thanx Jasmine T

Hi!

There is a forum called "Beyond the Land of Hyster" which is where members who are months and years post op come back to let everyone know how they're doing. You may want to check that out.

s and best wishes

Hi Jasmine T to Hystersisters

I had my hysterectomy for endometriosis and it has been 3 years now and so far it has been very successful for me. I have not had to go back in for any follow up surgeries and I'm hoping the endo is gone.

Please remember that my outcome may vary from someone elses outcome. I have read on the message boards that there are women who have the surgery and still have problems with endo

I did want to share what my doctor recommended to help have a more successful outcome. I did have a TAH/BSO. The doctor would not do the surgery unless my ovaries were removed since estrogen feeds the endo. He would only do a abdominal surgery so there was a better chance of seeing all the endo and removing it.

I then had to wait for 3 months before using any form of estrogen. (I choose to wait a year) I was also given 3 months of lupron after my surgery to help dry up any possible remaining endo left behind. I also use progesterone with my estrogen because progesterone counteracts the negative effects that estrogen has on endo.

I have read that each doctor has a different treatment plan for treating endo. Some doctors leave the ovaries..... some don't. Some doctors let women use HRT right away....some don't

This has always baffled me why there are so many different opinions on the best way to treat it. That is why I feel it is best to get more than one opinion from different doctors. If you have an endometriosis specialist in your area, it would be a great idea to get a second opinion from them since they deal specifically with endo patients.

I did want to share some articles that we have in our resources. It is great to do your own research so you are comfortable with your doctors discisions if you do decide to have a hysterectomy.

Here is an article that explains about surgical excision. It is suppose to help women gain the best long term pain relief.

http://www.centerforendo.com/news/gene/excision.htm

Here is an article that explains using progesterone to treat the endo.

http://www.cemcor.ubc.ca/ask/qa_endometriosis.shtml

Here are a list of medications used to treat endo.

http://yourmedicalsource.com/library...s.html#progest

Here is a link to our entire endo resource database.

http://www.hystersisters.com/vb2/lin...n=browse&cid=6

Best Wishes

Hi Jasmine, I know all too well the pain and trama of endo. My hyst was surgery was #7 for endo. I have since had surgery #8 this past Febuary, only 9 months after my hyst. A hyst is NOT a cure. It is a treatment, that is all. I had Ovarian Remnant Syndrome after my hyst, this happens in about 20-30% of all women who opt for a hyst/bso for their endo.
Before making a decision, may I ask what kinds of surgeries and or treatments you have has so far?
You may want to look here: www.endometriosistreatment.org
there is a ton of info here. Also the ERC website and message groups are great. http://www.endocenter.org/
Just do not go to the endoknow sites as they are Lupron?TAP sponcered and are only there to sell their drugs.

Carrie

Thanks for asking Carrie. My treatments for endo have included laparoscopy at age 17 for removal of ovarian cysts/endo, numerous regimens of BC pills, the BC patch(terrible, symptoms way worse), 6 months of Lupron, and more BC pills (currently on Seasonale). My GYN has advised that she doesn't see any point in doing diagnostic surgery (like another Laparoscopy) since the diagnosis is confirmed and there is a long history of endo. I have come to the point where I am in constant pain and have frequent bowel and bladder problems so maybe it's time to go ahead with the big one. I have been doing my homework, it kind of looks like Hyst might improve quality of life.
Lisa

Lisa, a hyst is not a cure especially without excision (the cutting out of the endo). The problem with hoping a hyst will improve your quality of life is that most endo is not on the organs removed durring a hyst. It lies on 9 other common areas. Endo makes its own estrogen, therefore will continue to grow even after a hyst in most cases. I pray you make the best decision for you, but I would get another apinion from an endo specialist (someone who does not use Lupron as true specialists KNOW that Lupron does not stop endo).

Carrie

Hi Lisa

It sounds like you have been dealing with the pain of endo for a very long time

While you may hear many different opinions on the outcome of a hysterectomy for endo...you are the only one that has to live with the pain and symptoms associated with this disease.

I do understand when you reach a point where you have to decide how your quality of life is affected by your endo. My deciding factor came when my GYN sent me to a urologist to examine my bladder. The endo had encased a big portion of my bladder and he felt it was only a matter of time before it puncture through the bladder, which would result in me using a catheter for the remainder of my life. I did have to have part of my bladder removed, but the remaining bladder that I have works good now.
Endo can wreck havoc on other body organs and I believe that is something that your doctor can help evaluate with you.

	Quote:
The problem with hoping a hyst will improve your quality of life is that most endo is not on the organs removed durring a hyst. It lies on 9 other common areas.

Here is a good article that explains where endo can be found.

http://www.ivf.com/endoassn.html

It has been commonly found on the organs being removed (uterus, ovaries, tubes) and since Endometriosis is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle, the uterus and ovaries play a key role in preventing any further endometriosis from growing and spreading even further.

It sounds as if you have been doing your own research on endo I believe that is important so you know that whatever route you decide to take, you will be fully prepared with the outcome. A knowledgeable surgeon is very important also, as they will know that All the endo needs to be removed.

The website that Carrie provided above has some very informative information. Try not to get overwhelmed with everything you read and just try to make the best decision with your doctor that will help you regain your quality of life.

Many Big 's

Hi jamineT

Sorry you have to go through this decision - it is not an easy one for sure and I found it very overwhelming. I also thought that a hyst would be THE cure for endo and I was shocked that it was not.....not I know it is not from first hand experience.

I had a hyst two years ago for endo - dr. kept ovaries - I was 40 and she did not want to put me into surgical menopause - when it came to the ovaries - she wanted to be conservative.

I still do not know if I agree or disagree - as troubledtabby said - it is still mind boggling that there is no consensus on treatment.....yikes.

I am now booked for surgery - two year less a day - to have right ovary removed due to nodule on it suspected to be endometrioma. It may be a cyst? but whatever it is - it is not going away or shrinking. May be both will come out if the endo has invaded the left.

I did entertain the idea for her to take both out and get it over with but there is so much information out there on the value of ovaries - even after menopause - for reducing risk of osteoporosis, heart disease etc......i also decided that if I can keep one ovary and my own hormones for even a couple of more years - then I have a couple of more years not to worry about surgical menopause.


Good luck in your choices and whatever you do decide - remember you made the decision with the best info you had at the time.

To all my endo sisters, I just want to extend a huge
This is a nasty disease, and we all have to make the best infirmed decisions we can on our individual care. I pary we all have pain free futures!
Carrie
http://health.groups.yahoo.com/group/erc/

I had my LAVH/BSO a little over a year ago, and my quality of life has improved dramatically. My endo was extensive and severe, and other organs were involved. My dr. had me wait 6 months before starting HRT, and I have been on activella (it has progestin in it) for a little over 6 months. So far so good. I know the endo can return, but the hyst was the best decision for me. I did not make the decision lightly, I did a lot of research, talked a LOT with my doctor before making the decision. I can't believe how wonderful I feel now. Good luck with your decision.
Sincerely, Paula