ENDOMETRIOSIS: How did we get so far off track?

Most who come to Nancy's Nook on Facebook have failed multiple medical and surgical treatments and are feeling pretty down. This is a place where hope can be restored. The reasons are contained in the post below. For the most part, gyns do not have a command of endometriosis and what is necessary to get past your pain and current status. It is possible, but you need greater skill in a surgeon. We can help you understand the issues and what would be logical first steps. (Nook is approaching 20,000 members, still gaining 300 a week, having failed all gynecology has to offer except meticulous removal of disease ).

To start, endo has been know for thousands of years, but in the early 1900's a fellow named John Sampson decided that endo was black disease on the ovary, that it came from backed up menstrual blood, that is was caused by delayed child bearing, that pregnancy or castration would cure it. This plus other fallacies were taught in medical school until very recently when I have heard they are at least pointing out that endo has many colors. Of that original concept by Sampson, none of it is true as we understand endo today. However many doctors still embrace it and just recently newly graduated residents in OB/GYN have said they learned that pregnancy, period suppression and castration are the treatments of choice.

Lets start with colors, a physician in Arizona Medicine by the name of Jansen in 1969 published that endo was in fact many colors and that in some patients you could see all the colors at once. In the 1980's Dr David Redwine expanded that understanding with a study that showed the endo goes thru an evolution of color appearance as it ages. So early disease may be clear papular, followed by orange, red, blue, or white plaquish fibrotic disease. Black disesae was very rare, in fact most biopsied black disease was found to be hemosiderin, the iron staining from bleeding caused by endo in the surrounding tissue. Primary endo does not have blood vessels on path report, so it does not directly bleed. It can be different for endometriomas or nodular disease that may have been infiltrated by micro blood supply.

White plaquish diease was originally thought to be and called "burned out " disease and often left in the pelvis. But if you remove it and send it off to the pathologist, you find fibrotic scarring and the glands and stroma of active endometriosis below.

Secondly in Redwine's work, he mapped the location of disease, and instead of it being primarily on the ovary, it was in fact found in 7 & 9 other areas of the pelvis more frequently than the ovary. (don't recall which ovary was 8th and which was 10th, but you get the idea). The floor of the pelvis, pelvic sidewalls, bladder, ureters, bowel, ligaments both inside and outside of the pelvis, and other occult areas are all more frequently involved than the ovaries. This means if you are looking for black disease on the ovary, you are likely to miss 75% of the disease. Many still approach it this way.

Then we should address the idea of backed up menstrual blood as the cause. When you examine endometriosis and the lining of the uterus in the same patient (endometrium, ) you find they are very different in appearance, in physiology, in construction, and endometriosis lacks hormone receptor population like the lining of the uterus. This means it cannot pick up hormones in the same way that the lining of the uterus does, which could explain why endo pain occurs thru out the month and or erractically. It is not capable of being orderly. Likewise, when you transplant a tissue from one place to another there is the concept of initial attachment. This is best explained by looking at skin grafts after a burn. The new skin is laid down, gradually attaches and becomes partially incorporated but line of initial attachment never goes away. You can alway see where they came together. That is missing in endometriosis.

Also in the 1980's. Dr Redwine working with the Oregon medical examiners office, made arrangements to obtain tissue from the pelvis of infants undergoing autopsy from deaths unrelated to endometriosis. What he found in 11% of these tissue samples, glands fitting the description of endometriosis. Later a group in Italy found the same thing in 10% of infants, which is the rate of occurence in the general population. So endo is likely laid down during our fetal development.

Now multiple studies world wide have shown strong favor for mulleriosis or endo being laid down during fetal development. What ever environmental impacts occur may in fact be impacting the host (mother) during pregnancy.

Then he looked at does endo spread and what he found was women who had endo longer did not have more areas of tissue involved suggesting that it is a static disease. This plus the low recurrence rates following skilled excision suggested that conservative excision was a good tool for the treatment of endometriosis.

Then there were the 75 patients he saw in his first years of excision who had already been castrated with complete hyst who had active endo some as long as 20 + years post hyst. Some had no estrogen replacement in that time. They underwent excision as well with dramatic relief of pain. 75% of the patients we saw had been dismissed as neurotic, and they all had biopsy proven disease.

In the 1960's a surgeon taking a woman to surgery for a c-section, a woman who had no history of endometriosis or symptoms of endo, found a dark colored cyst on the ovary. He biopsied it on removal and found it to be a blood filled cyst without any evidence of endometriosis. His conclusion? She had endometriosis and her pregnancy cured it. That along with Sampsons belief that castration also cured endometriosis became the basis for an entire industry of drug therapy. (gnrh agonists to create a chemical menopause, and birth control to simulate pregnancy) without any foundation in science to support the concepts.

So the history of endometriosis and treatment lacks science to support surgical castration, pregnancy, or pseudo pregnancy or pseudomenopause. Its all smoke and mirrors at the very dear expense of the patient. And one of the worse misogynist events in women's health ever, and it is outrageous. Couple that with the amount of psychological dismissal these patients under go, and you have as I have said before, a perfect storm for the poor outcomes these patients suffer.

Today there are less than 100 surgeons across the US and Canada doing effective endometriosis surgery out of 40,000+ gyns. Yet they all think they can do effective endometriosis surgery, but when the surgery fails, they often dismiss the patient to psychiatric considerations. Many do not understand subtle appearances and statistical location of disease play an important part in effective surgery. Some do not even operate in the lower pelvis and recently when someone without experience tried to manipulate the uterus out of the way, the organ was punctured.

The patient was told this is common, up to 95% of the cases. This is not true, it takes experience and skill to locate, identify, and remove endo. Microscopic endo likely does not exist, instead the smallest of lesions are about the size of a human hair, visible at arms length. To be effective the surgeon has to bring all of the considerations of modern concepts (Dr Redwine's work) into play.

Very few refer patients for pelvic physical therapy or pain management, yet pain is peritoneal in quality with bloating, nausea, pallor, painful sex, painful bms, pain with full bladder, exercise, pelvic exams. By peritoneal, I mean, the disease creates peritoneal signs and symptoms which are highly respected in every other disease. and treated aggessively with pain meds or pain work. In women with endo , it is somehow dismissed as its just her period. If the surgeon lacks interest or skill in removing disease, why not refer her to someone who can? It would be a compassionate consideration, to say the least?

Sadly today if a woman is to get relief in most cases she wil have to travel, to find someone with extraordinary skill to deal effectively with her endometriosis. Otherwise she is stuck in the revolving OR door with one ineffective surgery after another, only to be finally dismissed as neurotic and left to her own devices. And back lash at surgeons doing meticulous surgery, giving patients impressive relief, continues to grow, emanating from those who do less involved surgery. Why, would we disparage others who are able to give relief? 

There are good reasons to do a hysterectomy, but endo is not one of them. Endo must be completely excised if pain relief is to be achieved. Removing organs will not help if you leave endo behind. In cases of adenomyosis, when child bearing is done, some surgeons have found taking the uterus gives more complete relief of pelvic pain.

Once again, an Australian nurse, Sister Kenny's experience with polio patients comes to mind: She developed treatments that prevented frozen joints and severe pain with woolen hot packs and physical therapy. She was soundly trounced world wide for decades. Once they realized she was right polio treatment centers widely adopted her work. When asked why such simple changes in care with such dramatic outcomes was so slow to be adopted she replied: "When we speak with the voice of authority, we come to believe we are the authority." When I read that I thought despite evidence to the contrary. There is plenty of evidence that SKILLED EXCISION of endometriosis changes lives, well documented, and published, so where is the rest of the world? Why have we failed in compassionate understanding of these lives of quiet despair, and hopelessness? How is it that we cannot hear or comprehend their pain?

Reasons for pain after excision:

* in missed disease pain would return pretty quickly

*recurrent disease (seen in most often younger patients where disease was not fully developed at the time of surgery, and over repeated cycles continues to develop) usually less complex than the initial disease but still can create pain

* Adenomyosis, a condition of the uterus that excision does not help

* Pelvic floor dysfunction, a condition of the muscles of the pelvic floor that excision does not help

* Interstitial Cystitis a condition of the bladder than excision does not help

*Nerve entrapment: a condition that excision does not help.

*Uterine tumors unrelated to adeno, also not helped by excision

* and other conditions I may have missed

*adhesions which can form both because of surgery and in many cases due to the persistence of endo and the associated inflammation and bleeding.

Excision addresses the painful lesions that cause inflammation and bleeding in the abdomen and on organs. The majority of patients will be helped with excision of lesions and a small number will see a recurrence some 2+ years, Published studies will vary in terms of the percentage but I believe it is around 15-20%.

In a large part the success of excision lays at the feet of the surgeon and their understanding of what the disease looks like, where it is found, how that relates to symptoms and the skill and/or consultants to remove it all.

The majority of gynecologists do not have the key skills to successfully manage endo, but there is growing interest and many of the experts in the field are teaching others continuously. 

Failure to recognize the impact of even a few lesions in the pelvis is misogynist and careless. The trend to treat "mild" endometriosis with medication completely ignores the fact that medical therapy does not treat disease, that pain frequently breaks thru as disease continues to progress and that "minimal" disease can cause disabling pain thru the impact of peritoneal inflammatory processes and other issues. It is arrogant to assume that mild disease does not deserve skillful care and at the very least lacks compassion.