Originally posted on discussion group.Why Surgery Can be Ineffective in Endometriosis Treatment by Nancy Petersen
Why does surgery not work? There are a number of issues, and I will try to cover them here. (at least some of them) Endometriosis gets about 15 minutes of lecture time in med school. Many med schools are still teaching Sampsons theories about endometriosis, 1. black disease on the ovary. 2. caused by menstrual fluids backing up and the cells fall like snowflakes and implant and grow where ever they land, 3. caused by delayed child bearing (career womans disease) and a few other idea.
Later an OB/GYN when doing a c section noted a black blood filled cyst on an ovary of a women who had NOT been diagnosed and who had NO symptoms of endometriosis. He removed the cyst and sent it off to pathology, and the report came back as a cyst with old blood, containing no endometriosis. Conclusion? This asymptomatic woman had endometriosis cured by her pregnancy! Surprised me too, lol. On that one case presented to medical groups and published an entire industry of pregnancy/bc’s/ period suppression was born. That is the science behind medical therapy for endo.
Well, Sampson’s theory was also a driving force in treatment. But both were wrong, and yet the tide of mis-information proven over and over cannot be turned. One has to ask why?
First retrograde menstruation happens all the time, more often in china where second pregnancy abortions are common. The suction causes a back pressure that draws blodo and fluid into the pelvic cavity. Yet they have no higher rate of endometriosis than elsewhere.
Next, to transplant a tissue from one part of the body to another, initial attachment is part of the process. If you do skin grafts, the burn will be covered but you will always be able to see where the attachment of the new cells take place,. It does not go away. This is missing in Endometriosis.
Next when a tissue moves from one place to another, (endometrial cells from uterus to abdominal/pelvic cavity) they do not change their appearance and function. And yet when you compare endometrial cells from the lining of the uterus and the endo implants you find hundreds of differences but the most glaring is the lack of estrogen receptors( little gateways for the cell to take in estrogen and other hormones).
Many other difference exist so the implants and the lining of the uterus while similar are clearly not the same tissue. So one has to wonder if it really could be cells from the uterus. Most thinking people would say no. And yet, we have come up with one hormonal therapy after another for cells that are immature , contain few receptors, and then we tell patients the drug therapy will “cure ” their endo, when it primarily shuts down estrogen production. Yet patients often have break through pain while on medical therapy. It makes sense but way to many patients are told that is not possible.
In addition to side effects, there is real danger than gnrh agonists, destroy bone that cannot be replaces and I have heard one patient after another comment that their ovarian function never returned to normal. For older women this might be ok, for younger women still hoping to conceive, this is not a good thing
You can find a more intelligent discussion of Sampson and where he went wrong in things I posted a few days ago, or you can go to Dr Redwines page and click on the articles link. It is important to understand the basic beliefs about endo have been proven wrong through multiple researchers as long as 27 years ago, but are still taught and guide practice today.
Statistically, endo appears in 9 other areas of the pelvis and abdomen more frequently than the ovary, Could that with the black powder burn concept, which is only positive for endo half the time, and you miss 75% of the disease, left behind to be a source of continued pain.
In the early 1980’s, Dr David Redwine was starting in private practice in Bend Oregon. He had the usual 15 minute lecture on endometriosis in medical school like everyone else. However he noted when taking histories from patients, and when taking patients to surgery he was finding things that were not covered in medical school. You may remember from part one that Dr John Sampson sent the industry on an erroneous path in 1925 when he began espousing that endometriosis was black powderburn disease on the ovary. We further went astray because he proposed that delayed pregnancy was likely a causative factor was was retrograde menstruation (period blood backing up through the tubes), and that no matter what you did endo would always come back. This was followed by an observation by an OB doc who did a C-section on a woman who did not have endometriosis, nor any symptoms of endometriosis, and found a dark colored cyst on an ovary, which he removed.
That specimen was sent to the pathologist and came back as negative for endometriosis. Yet he proclaimed and presented in the literature pregnancy cured endometriosis.
On those two doctors “findings” an entire industry was founded on endometriosis treatment, later came bc’s and gnrh agonists to stop periods and cure endo. None of this worked, but fancy targeted marketing convinced busy doctors this was the way to go.
Now as Dr Redwine began to see these things he did not previously learn about, his curiostity was piqued, and added to that, his first wife had endometriosis.
He began seeing things in the pelvis which which clearly were not black powder burn disease described in text books and medical school lectures. So he began systematically biopsying everthing that looked abnormal. White stuff (often refered too as burned out disease, so left behind), clear blister type stuff, red stuff, orange stuff, blue stuff and yes even black stuff. Each and every lesion was sent off to the pathologist for study, and most came back positive for endometriosis. The black stuff came back as endo only part of the time, the rest of the time it was coming back as iron staining aka hemosiderin. Hemosiderin is the iron in the blood. Since endo caused bleeding in the surrounding tissue (early endo does not have blood vessels or nerve supply) it made sense that over time some iron staining would be left behind.
These findings prompted him to do a complete review of the available literature on endometriosis that had been published at that time. He found some amazing things, first that Meigs in the 1950’s found that careful removal of endometriosis implants caused very few patients to have recurrences. He also found an obscure article in Arizona Medicine in 1969, an article by Jansen, that described the endo he was finding in the pelvis as clear papule, red, yellow, orange, blueberry, and black and in some patients all of the appearances were present at the same time. Whoaaaaaa Nellie.
No he didn’t say that, I did when I first attended one of his lectures, I said to myself, how could we be so dang far off??
After he completed his review of the literature, he designed and pursued several studies and data accumulation. He found the following (apologies to the researcher if I leave anything out)1. Endometriosis evolves in color as it ages
2. Black powder burn lesions are not always endometriosis. So taking into account these two findings, if you are looking for black powder burn disease, taught in medical school, you miss 75% of the disease, left behind to continue to cause pain and disability. Regardless of how many surgeries you have, if the operator does not know this, you are in trouble
3. Statistically endometriosis occurs in 7-9 other places more often than on the ovary. So again if you are looking for black powder burn disease on the ovary your chances of freeing the patient of pain are likely to be very low. He also found the smallest of lesions were around the size of a human hair easily seen at arms length.
4. He found that endometriosis implants when you look at them do not have blood vessels or nerve tissue, and so they do not bleed, but they appear to cause bleeding in the surrounding tissue, and endo will be someplace other than where the blood is.
5. He found that endometriosis was a static disease, meaning that women who had the disease longer did not have more areas involved. You would expect that the longer you had the disease, the more it would spread. This is not the case. It is important because doctors were pessimistic about surgery thinking it would always come back, There is a small percentage of patients who will have recurrences in areas that were previously resected. This may be in metaplasia or in the dna. But meticulous excision considering all of the issues here, color, location, a patient could be permanently relieved of symptoms, and now over 3000 cases this has held true. (his cases, there are many more with some of our advanced surgeons like Robbins, Albee, Dulemba, Sinervo, etc)
6. He found that endometriosis did not transplant. When you transplant a tissue from one place to another, there is evidence of initial attachment. The place where the tissue attaches has a line that does not go away, it is always a transplant. So retrograde menstruation theory so prevalent in the industry is unlikely the cause of endo
7. He found in his literature reviews that endometriosis lesions are very different than the endometrium of patients with the disease (in dozens of ways). The most glaring is that endo lesions in the pelvis do not have the same hormone receptors that endometrium (the lining of the uterus) does. Makes one wonder how these lesions could predictably pick up hormones to destroy themselves. The question that has always troubled me is, how to you destroy ectopic endometrium (endo lesions in the pelvis) with out destroying normal endometrium (lining of the uterus.). Or how do you wake up ovaries after they have been supressed. I have spoken to a number of women who’s ovarian function never returned to normal after gnrh agonists. This is important when one wants to retain fertility.
so to recap about surgery not being effective or dozens of surgeries not working, (most in one patient I saw was 22 surgeries before finding an excisionist)
you have to know where it is found statistically, you have to have skills to access it everywhere (diaphragm which actually requires a small incision)(retroperitoneally outside the pelvis, on uterosacral ligaments or on small bowel) (floor of the pelvis, behind and below the uterus, not everyone has developed skills to work there), you have to know the color manifestations the disease has in different stages and to know all stages can be present in the same patient, you have to have a bowel surgeon on had or have privileges certified in the hosp where you work to do your own bowel surgery, you have to use some method of finding more subtle diseaes whether you use the robot, or you use blood painting * , (a way of using fluid found in the pelvis to wash over the peritoneum. the fluid will wash around lesions like a shallow stream over pebbles.)or you push your scope closer to the peritoneal surfaces in the pelvis and over lying the organs and look for abnormalities. A physician can teach himself or herself with simple magnification how lesions look and how removing them improves the patients lot.
As surgeons come to excision they will not be proficient until they have done a number of cases and maybe reoperated on a few. But this is the scienfic way, develop an idea, try it, study it, measure results, re-try failures, measure results.
To get the best out come from a surgery, we need to buy the best skill we can afford, it is unlikely that a ob/gyn with a booming baby and gyn practice can or will have the time to commit to the devastating pain and disabilty that women with endo face. If we keep doing what we have always done, we will get what we have always gotten, poor outcomes at surgery,
While endometriosis may infact be two different kinds of disease, clearly the majority of us, can be helped significantly with excision of disease, and many of us now pain free for 15-20 years consider ourselves cured. That is possible for most. But we will not change the industry until we vote with our feet and seek endo care from the best of the best. Where finances are a problem, then make a plan to accumulate what you need, rely on those willing to help, do what ever it takes to get into the best possible hands.
Dr Redwine’s work has been dubbed Modern Concepts because he reviewed the literature and looked for the scientific methods used to determine what endo was, where it was found and how it was treated and found science lacking in almost all of the conclusions that had been made about this disease. He set about studying it in his own population of patients from around the world and found stunning conclusions, now confirmed by many others, some of what he found in the literature was accurate but so deeply buried it never had a chance to reach mainstream application,
Initially it was just him doing this surgery, then came Bob Albee and now many others in the US, and Dr Redwine has taught these surgical techniques around the world and many surgeons have gone to Bend Oregon to watch his work, some even came with their patients.If you are still with me, thanks!