I want to talk about the definition of successful expert excision from a patient perspective.
If you’re like me, you’ve read the literature from the MD/CRNP angle but what does that translate to for the average woman who is in severe pain and ya know, wants to be able to get off the heating pad and get back to her life?
Let’s quickly review the facts-
*As of 2016, EXPERT COMPLETE EXCISION has the highest success rate of any other treatment option for endometriosis currently available. It’s goal is to remove LESIONS while retaining organs whenever possible.
*Complete excision is NOT the same as ablation/cauterization/vaporization/fulguration. It’s also not the same thing as “excising some lesions” while “burning off other lesions”. It’s not a surgery the average street corner gyn has the training or surgical skill to perform. This is not personal against the typical OB – it’s simply a matter of fact statement. If a doctor is busy delivering babies, doing paps, prenatal care, that’s time that is NOT being spent in an OR developing/retaining sharp endometriosis surgical excision skills. Surgical skill matters. Surgical experience matters. This doesn’t mean your OB is not a good doctor for other things, it means that your OB is not your best chance of overcoming endometriosis.
*Success of surgery is dependent on how advanced your case is (all more the reason to have it diagnosed/excised early), surgical technique, and the surgeon’s skill. The surgeon must have enough experience to recognize and subsequently excise ALL disease. Again, not an attack on the average doctor. The flat truth is that different doctors have differing levels of skill. My husband is the primary vehicle operator in my family. Why? Because I’m a terrible driver. Squirrel anyone?? Seriously, if you ever encounter me on a highway, I’d recommend running for your life. Doesn’t mean I’m not good at other things (rambling about women’s health to anyone who will listen?), but we all have varying strong suits, and well, driving is not mine. My husband, on the other hand, is an excellent driver. The same principal applies to pelvic surgery. The surgery can only be as good as the surgeon performing it. The run of the mill OB is far better at delivering your babies than they are at delivering you from the hell on earth that is endometriosis.
*The success rate of expert excision is SIGNIFICANTLY better than superficial burn off techniques. Superficial “burn off” surgery with street corner Dr ABC means that you are looking at surgery after surgery, indefinite hormonal suppression, and ultimately castration (which is not a cure and many will continue to suffer even after TH+BSO).
By contrast, expert complete excision means the odds are in your favor to be able to keep your parts and move on from endometriosis. However, it doesn’t mean that everyone who has quality excision will be forever fixed up. Some women (thankfully, a small minority) will have true recurrence. As such, it’s important to realize that while most will do well, some will fall into that minority statistic.
*Endometriosis is not the cause of all pelvic pain. If you’ve been fortunate enough to battle endometriosis, I’d wager you’ll also likely be lucky enough to have at least one other pelvic condition over the course of your lifetime. Adenomyosis, Interstitial Cystitis, Pelvic Floor Muscle Dysfunction, adhesions, fibroids, ovarian cysts, etc LOVE to join in on the pelvic pain party.
So what does “endo free” or “successful excision” mean?
It means that, after a complete expert excision of your endo lesions, you have a very LOW chance of needing/having further surgery in which endometriosis will be found/confirmed on a pathology report as a culprit of your pain. It means that, barring those other conditions I mentioned, you have a good chance of keeping your uterus/other parts and *not* requiring hormonal suppression measures. It means that (barring other conditions), your chances of fertility should increase. It means that your quality of life should improve dramatically and ideally, you’ll be able to return to the land of the living.
What does it NOT mean?
Due to the fact that expert excision only treats endo – excision of endometriosis does not treat any other pelvic condition – it does not mean that you will never have pelvic pain again. If you have other conditions, you will need to address those conditions individually in order to achieve optimal results. For those with adenomyosis, that can mean presacral neurectomy or hysterectomy (preferably without BSO). For those with IC, it can mean following up with a urologist or urogynecologist and finding a treatment that works for your IC. For those with PFD, it can mean you will need pelvic floor physical therapy. For those with fibroids, it can mean hysterectomy or myomectomy. In a perfect world, it might mean seeking out a highly trained surgeon who can excise your endometriosis while also treating adenomyosis/fibroids/cysts/other abnormal pathology during the same surgery.
I personally was “lucky” enough to have endometriosis, adenomyosis, and pelvic floor dysfunction. I had my endo expertly excised in 2010 (no recurrence to date).
4.5 years after my expert excision, I developed severe pelvic pain again. I noticed though that the pain was not the same as my endo pain had been years before. My endo symptoms in 2009/2010 were largely lower left sided “stabbing” and “throbbing” pelvic pain. This time, my symptoms were midline and centered in the pelvis and felt like uterine labor contractions. I also felt as if I was carrying around a burning bowling ball. Surgery in December 2014 (an ovarian sparing TLH) would confirm that there was no endo to be found and the issue was with my uterus itself (adenomyosis). I was also diagnosed with PFD and would ultimately spend 3 months attending pelvic floor physical therapy in 2015.
I’m glad that I didn’t assume the problem was endo because I would have been mistaken.
All of my conditions each required their own treatment for me to be well.
You can watch my video montage here, read more of my story here, and read more about excision for endometriosis from an expert surgeon’s perspective here.