WeAreEndo.org - The Social Support Network for People Living with Endometriosis

Jen

wow thanks for all the info!

9 months ago

Geneva

Would like to have excision surgery, but I live in Saint Louis, MO and would have to travel and take time off with my husband.  My husband just started his job and cannot start asking for time off.  Also, my husband stated to me that it was pointless to have surgery done if the endo was just going to come back and there is no cure.  I don't know how to get him to understand.  He won't read stuff that I put in front of him; not that he doesn't care, he just doesn't read it.  I guess it's a lot of things to try to understand.  I wrote to the CEC and I was throughly impressed with the rate at which the responded to me and that one of the doctor's actually answered my question the same day.  I definitely want to go to Atlanta, but do not know how much it will cost me (since insurance won't cover all of it) and if I will even have the same insurance by the time I get around to going.  The hardest part will be convincing my husband to say yes and come with me and get time off together.  I am trying to find a new job myself, so when that happens, I can't just ask off 2 weeks.  I guess I can make the CEC a long term goal for another time, but what do I do until then?  Not Lupron.  Birth control is not really helping.  Plus, I still haven't talked with my doctor about my Lupron decision and excision decision.  I can't wait to hear what he has to say.  When I voiced my fear about Lupron causing bone pains he said he doesn't.  And that was the end of the converstation.  This is my 3rd gyno this year.  The first one that I immediately liked; who was willing to diagnosis me properly and even knew that endometriosis comes in many colors.  But I was disappointed when he recommended that I take Lupron and not discuss with me the bone loss issues.  I like him, so I'm not going to immediately run out and find a new doc because we disagree on something...but I am a little upset that I can't have a "perfect" doctor.

10 months ago

Nicole

Thanks heather for posting this!!

10 months ago

Heather

Hi folks!  Hope all are doing well.  :)

Just to clarify; laser is a tool - excision is a method.

Laser can be - and routinely is, in the hands of true Endo specialists - safely and successfully used to perform sharp dissection and excision with high success rates and long-term outcomes.

Most gyns can and do use the laser to burn off some Endo from some
areas (and typically follow with suppressive meds like Lupron); few gyns are actually advanced laparoendoscopic surgeons qualified and trained
in the meticulous art of surgical excision of all disease from all areas (and do not use such drugs as GnRH therapies).  If one's doctor does not know how to perform excision (and there must be a proven track record and data to back up that claim; simply stating one knows how to excise does not make it so, nor does being an ACGE fellow, though that it is better than not being one), perhaps consider the investment of traveling to a specialist.  I always tell patients, do it once and do it right, where and whenever possible.

When considering surgery, the first question to always ask is not necessarily which tool is being used (although that is of interest), but how it will be wielded.  Laser excision is a completely different animal from laser vaporization, ablation and other superficial methods of removal.  If a doc tells you that you will be having ablation/vaporization/fulguration/cauterization or other ineffective/inefficient attempts at treating the Endo, know that the literature reflects a 40-60% recurrence rate in the very first year, vs. 7-10% of recurrence at up to 20 years out in excision patients.

The disease must be excised, whether through laser, monopolar scissors, or other surgical tool, in order for the maximum benefit to be achieved.  Endo left behind in the body will only continue to thrive.

Typical claims one might have heard:

"We got what we could see - here's some Lupron to kill the remaining disease."

"We got what we could - it's too dangerous to touch Endo on the bowel/ureter/etc.  Here's some medication to cure you/keep you suppressed afterwards."

"We got most of it.  Now get pregnant."

"Surgical removal is dangerous; it's better to leave the disease in, otherwise it'll just spread and you'll get more adhesions."

"Excision is the same thing as ablation/vaporization/etc.  I excise some areas and vaporize others; it's just as effective."

None of the above are true.  It is perfectly possible to detect ALL Endo under the scope; if the surgeon knows what s/he is looking for; it is perfectly possible to excise ALL disease from ALL areas including diaphragm, bowels, etc. etc.; all surgery is dangerous, of course,  but it's far more dangerous in the hands of someone who knows so little about the disease that they think it's ok to leave it in; Lupron and other meds never cured anything or improved fertility or served as long-term, effective treatments for Endo; excision and vaporization could not be more different and if one knows how to truly excise, one would not need to ablate except in very rare and specific circumstance; "pregnancy to cure Endo" is an outdated myth and one of the most absurd claims about the disease ever made.

If a doc says any of those things to you or any remarks resembling those statements, s/he is simply an ob/gyn generalist who knows how to burn areas of the pelvis with a laser in between delivering babies, and is NOT an excision surgeon who specializes in Endo and it's treatments/pathology/etiology/etc. 

You can learn more by visiting the sites of any reputable excisionist, including:

http://www.centerforendo.com

http://www.endometriosissurgeon.com

http://www.endoexcision.com

http://www.drseckin.com/

Hope that helps.

:) Heather

10 months ago

Nicole

Hi Melissa,

Thanks for joining. If I were you, I wouldn't have surgery unless you are having excision. The reason being, in six months, you will be looking at having to have another surgery with the laser. It burns off the surface of the endo and doesn't get rid of the problem, then usually comes back worse. I had 3 surgeries before I had excision, and I wish I wouldnt have wasted my time.  Recovery time completely depends on the extent of the endo. I was out a total of 2 weeks with my excision, but I had very in depth issues involving my bowels and bound organs.

11 months ago

Melissa

Hi Gals, I'm having lap surgery this tuesday, but I'm not sure if I want to remove the endo with the laser or with excision. What are your opinions on it? I have my pre op on Monday, at 10:00am and was going to ask my doctor about it. I work with autistic kids, so how long do you think I would have to take off of work, if I do the excision method? Any advice would be appreciated. Thanks, Melissa

11 months ago