Excision Surgery
On January 15, 2018, I had my last surgery. Exactly one year ago I was back in Atlanta having more body parts removed, but maybe even more importantly, one year ago today I was able to know with certainty that my endometriosis had been completely eradicated by my surgery the July prior. My second surgery was due to adenomyosis and during the surgery, Dr. Sinervo confirmed that there was no endometriosis present to be excised. My excision of endometriosis was successful. I guess some say we are always in remission because there is no cure for endometriosis, but six months with no recurrence, proven by surgery, was a HUGE win. So – let’s talk about the excision surgery that SAVED my life.
Excision surgery is the current gold standard treatment for endometriosis, but why don’t our doctors tell us about it? Why don’t we see commercials for it like we do for various hormonal therapies to “treat” endometriosis? The answer is complex, and there are a variety of resources I will reference here for further information regarding the topic, but for now, I’ll break it down like this:
There are no insurance billing codes for the use of this current surgical technology for gynecological purposes. The technique requires additional training that costs time and money for these specialists, but without insurance coverage, the surgeons do not get adequately reimbursed. Additionally, a vast majority of OBGYNs will focus on the obstetrics rather than the gynecology, with little to no use for the additional specialty training. This means that if you go to see your usual OBGYN and have determined surgery is the next step in treatment, they will proceed with basic ablative surgery that there is an insurance billing code for. This type of surgery does not require any additional training and they can easily do it as an outpatient operation.
That is the very, very tip of the iceberg regarding why excision hasn’t been widely adopted despite current, worldwide data that demonstrates otherwise. Contrarily, ablative surgery has no long term success. I can state that with almost absolute certainty but will have the publications available and referenced here as well. Honestly, just leaving the disease alone until proper surgery can be performed is likely the ideal route. Ablative surgery can result in more damage by the occurrence of adhesions. The same ineffectiveness goes for attempting to control the disease medically. While some hormonal therapies such as oral contraceptives have provided some pain relief in some women, it does not reduce the amount of the disease, eradicate the disease, or slow the progression of the disease. When contraceptives are discontinued, the disease is still there and potentially worse.
The current push for prescribing the “new” endometriosis drug Orliissa is essentially the rebranding of an old drug called Lupron. I don’t even have the mental energy to go into detail about that situation right now, but it is an expensive, dangerous drug that is no more effective for endometriosis pain that regular oral contraceptives. The pharmaceutical company, AbbVie, has even made their own “movement” for endometriosis awareness – SpeakEndo and Or I Can – that is currently being marketed alongside advertisements for the drug. It is a huge money maker for AbbVie, who is already in legal trouble over their shady business practices with Humira.
I really love this feedback provided by one of the referees (and endometriosis specialist) Dr. David Redwine, of the Orilissa study before it was approved by the FDA:
“I reviewed the New England Journal of Medicine article on the new endometriosis drug Orilissa. It showed clearly that most women who take the medicine will not have a therapeutic response. But since it’s a little better than placebo, the FDA approved it.
Orilissa seems less efficacious than was Lupron. Since Lupron was equivalent to low dose birth control pills, one could expect Orilissa might be less effective than birth control pills.
Of the 22 authors, 8 (36%) were employees or ex-employees of AbbVie holding stock and/or stock options. That is up from 33% of authors of papers published about Lupron. This increase shows the increasing interference of drug companies in science in order to make a profit.
One of the hidden strategies used by drug companies is to have a lot of patients under study, as with elagolix, where several hundred received either the higher or lower dose. An increase in the numbers under study means that statistical significance can be shown more easily. So studies will sometimes be ‘overpowered’ with large numbers of patients simply to ensure that a small arithmetic difference will turn out to be statistically significant. But statistical significance isn’t the same as clinical significance.” – Dr. David Redwine
Life after excision, that’s another story.